The Time Has Come

Well, I think it’s time to hang it up, folks. I’ve been up since insomnia o’clock (it’s currently 5:56 a.m. — I’ve been up for an hour), but why is that interesting? It’s not. I’m happy to say my “cancer journey” is pretty boring at this point, so I think it’s time to move forward and officially bring Kirsten Kicks Cancer to a close. Perhaps I’ll leave the door slightly ajar.

When I was first diagnosed, after a failed attempt at utilizing a website service meant for this kind of thing, I made this site to keep people posted on what was going on. It has turned into so much more. I’ve said it before, but I’ll say it again — I have the most supportive family and friends and and am lucky to literally have dozens of people I can turn into in a time of need. But this crap is still really lonely sometimes.

It’s hard to explain if you’ve never experienced it or some form of something like this. And if I feel that way, with my droves of supporters, what might others be feeling? Despite being such an open book in general, I was hesitant to be so open about this. But then I remembered who I turned to in my early days of diagnosis, before I had even told my friends. A former coworker from Wisconsin who was in treatment at the time. An acquaintance who has since become a friend who had just had a mastectomy. I decided if I could be that for even one person, it was worth putting it out there.

Sometimes this blog felt like a lifeline to the real world. A public diary focused on mainly one aspect of my life, in which I tried to be as honest and open as I could while still holding some things close to the vest for me and my inner circle. I know for a fact this site has been a comfort to many, many people. There are those of you reading this who I have texted with in the middle of the night, spoken with on the phone about what symptoms we’re each having, and conspired to get together for coffee when we’re both better. If we talked about that — reach out! Let’s actually do it! Turns out life is busier when you’re better — why did we wait, exactly?

I’ve become somewhat of an accidental cancer therapist. Probably once a month I get a text or e-mail saying, “Hey, do you mind if I give my friend _________ your number?” Just last week I made a new “cancer friend.” She caught hers early, thanks to regular checks after losing her mother to breast cancer six years ago. No chemo or radiation, but elected for a double mastectomy. When we spoke there were kids interrupting and someone coming to the door (of course while her husband was momentarily away) while she was just three days out from her surgery. This. Shit. Is. Hard. She literally sighed a sigh of relief after some of what I said. Someone out there understands. She was nervous to see under her bandages for the first time. I told her the real deal — that I waited as long as I could to avoid it — 5 days — and that I almost passed out when my sister helped me get the bandages off. I had to sit down on her bathroom floor and thought I was going to have a panic attack. But I got through it.

So, I will probably keep renewing the domain on this every year for now in case it can prove to be a comfort to others. No two people have the same experience, that’s for sure, but this is a roller coaster and I’m so glad mine’s getting really flat and boring. Keep sending people my way. I love connecting with people and am so, so happy to help.

I want to help on a broader scale, but I’m not sure what that means. I’ve been writing some and kicking around the idea of a podcast or maybe a book? I even have a documentary idea, though not cancer-related. There are only so many hours in the day and dollars in the account, though. I love fantasizing and coming up with ideas and new things to try (see: my life, hobbies and careers), and am always open to the possibilities.

A few weeks ago the dining editor of HOUR Detroit magazine reached out to me. I thought it was some kind of an ad sales pitch, but we eventually connected. I still haven’t asked how/where she found me, but she wanted to interview me for the October issue — their health/top docs issue. Apparently it started as an idea to discuss food, healthy eating, etc., When she did a deep dive she discovered I was a doula and a cancer survivor, October being breast cancer awareness month. We had a good long chat, after which she said, “I have an idea — why don’t YOU write it.” Um, what’s that now? I hesitated. She said I could take the weekend to think about it. But before she even finished her sentence, I blurted out, “F—- it, I’ll do it.” What’s that saying about how if something scares you, you should do it?

Although some might see me differently, I’ve struggled to find my voice and feel confident in that, I think throughout my life. Worry of being judged. Worry of people taking things personally. Worry of — you name it. Yes, I’m confident in many ways, but sometimes — maybe a lot of times — I’ve been faking it until I make it. I mean, who cares what little ol’ me has to say? Well, maybe they don’t. But this editor did and I’m trying to stay open to all conversations and possibilities these days. She told me what she wanted the focus to be, that I had a week or so to do it and it would be 700 words. Wait, what? I think I have text messages longer than 700 words. And she wanted it to encompass A LOT. So, I did my best. Because it is an essay a drawing accompanies it, so no photoshoot (fine with me!). The issue comes out in about 6 weeks.

I hope I have thanked everyone individually for all of the tangible and intangible gifts and love you have shown me over the years. If I haven’t, know your acts of kindness, generosity, love, good vibes and prayers are appreciated and have not gone unnoticed. I literally might not be here without them and I know that.

At the risk of sounding cliche, cancer changed my life. In so many ways. Would I choose it again if I had a choice? Most definitely not. But I kind of think, instead of “Why me?" — “Why NOT me?” I’m happy I’m still here to tell the tale. I’ve had a boatload of support and still do. And there’s no question good has come from it.

I now have a good friend, who happens to have a daughter a year older than James at the same school, who I met because her ex-husband knows Daniel and when she was diagnosed six months after me she reached out. When my “first love” (or whatever I thought it was) learned I’d had cancer, he googled and found my Fresh Chef site. He called the number. For reasons I still don’t understand, I picked up. (I was at work, my client was standing right there, I didn’t know the number). One year later, I consider him among my closest friends. Some people who stepped up surprised me. Others who didn’t surprised me. Isn’t life weird?

I don’t know that everything happens for a reason (and seriously, please don’t say that to anyone having a hard time even if you really, really believe it), but you can certainly learn from everything. And that I have done and will continue to do. And I will continue to do my best to go forward in life with an open mind and an open heart, judging less, listening more. Knowing very little people say and do is about me. Doing my best to be a better me and allowing people to be who they are. Loving the girls the best I can and working as hard as I can to provide and survive.

Of course I will still have appointments and medication changes and a few blips on the radar screen. Hopefully I’m done with surgeries and anything major. Who knows — maybe I”ll check in when I reach a milestone or two. But I think our work is done here.

Until then, no news is good news.

Over and out.

K

P.S. Remember how I said I was participating in the Brushes with Cancer organization and its annual Twist Out Cancer event, both as an “inspiration” and on the host committee, and that we were looking for sponsors? That’s happening now! I’m participating in the Midwest regional event, which will hold in-person events for inspirations and the artists we’re paired with. Everything else has gone virtual this year. I’ll be reaching out to some people personally, but here are a couple of links. You can find out about the program via the site, but a quick overview is that it pairs cancer survivors or people currently in treatment with an artist. You share your story with the artist and they create a work of art based on your story.

The works are then up for auction as part of the event itself. There’s also a raffle — everything form wine baskets to vacation home rentals. All funds raised pay for the program, which includes art therapy and other workshops, speaker and author events, meditation events and more, as well as providing artists with supplies for the program and more. It has been incredible connecting with other survivors and thrivers in such a new and unique way.

If you have a business or would like to potentially be a sponsor, there are many different sponsorship levels. We are also looking for things to include in the raffle, if you have anything that would be good to include! You can always reach out to me for more info. Sponsors, depending on the level, include tickets to the virtual event and many other things listed on the web site.

You can also purchase tickets to the virtual event, or sponsor people like me, who get to attend a private in-person reception for participants. There is an add-on for a “TwistKit,” which will include food and drinks, in lieu of being able to attend an in-person reception. The organization is encouraging groups to get together for watch parties during the virtual program on Sunday, Nov. 14. I’ll be a part of it, as well as the artwork I inspired by a Detroit artist.

Of course, reach out with any questions — maybe I’ll skip the in-person Chicago reception and we can have a watch party somewhere! :)

General event info: https://twistoutcancer.org/brushes/midwest2021/

Sponsorship link: https://one.bidpal.net/brusheswithcancermidwest2021/custom/custom1

Ticket link: https://one.bidpal.net/brusheswithcancermidwest2021/ticketing

Five Years

This time of year always is a little odd for me. My Facebook memories pop up and I remember those final days where I was awaiting my biopsy results and unaware that I had cancer. I was supposed to find out on a Wednesday. On Tuesday, June 14, a client had canceled so Daniel took the day off too and we lounged and watched a movie. I fell asleep. Was that the last good rest I ever got? Sometimes I wonder.

I left to go to the store and pick up Claire from an appointment. As I pulled out of the Trader Joe’s parking lot, I got a call and answered it. It wasn’t my doctor, but a different from the practice. Because my provider wasn’t in the office she “Just thought you would want to know your results had come in, so I thought I would call!” She sounded upbeat, if not downright chipper. I exhaled. “The biopsy did show a cancer.” A CANCER? What the hell does that mean? A CANCER?

Then she started spouting off all kinds of information and what my choices were and where I could log in to find X, Y and Z. I picked up Claire. She asked to stop and get a poster board for a school project. I said we could when we left to pick up James, who was now just over 2 years old, from daycare in a bit.

I walked the groceries in and began putting the cold stuff in the refrigerator. Daniel and Claire were play-fighting and laughing. I walked past them up to our bedroom. Pacing, pacing, pacing. Eventually texting Daniel to come upstairs. We lost it for just a brief moment in time, then began calling my doctor repeatedly until she picked up. (She was our landlord, after all, so we had her number). She said she was call us back when she figured out what was going on.

Then it was time to get James. Daniel left to get her and picked up sandwiches on the way home. I barely ate and would lose about 10 pounds in the next week. After dinner, I gave James a bath. I was in shock and on autopilot. I have this photo of her so happy and smiling from ear to ear. Her little butt sticking out of the water.

I often wonder what mom I could have been, had that day been different. I did my best during treatment, but I was tired. I still am. Would I have set better boundaries? Would I be more patient? Would everything be different if, for nearly all her life, she didn’t have to be careful around me or worry that she was going to bump one of my “boo-boos.”

For that reason, I really and truly hope I’m done with my surgeries. My incisions from my most recent procedures are still a bit tender. She’s all arms and legs and they’re always bumping and poking me right where it hurts most. I try to keep quiet, but sometimes I can’t help it.

I guess it doesn’t do any good to think about what could have been. Who I could have been. Who I might have been had things gone differently. But I’m grateful to have a clean bill of health and finally feel like I’m clearing away some of the cobwebs that have clouded my path to healing. Physically. Mentally. Emotionally.

After a yearlong relationship that proved to be a distraction from healing, the last year has been eye-opening. Who am I, what do I want and what am I doing (or not doing) that will get me there. Pandemic-imposed solitude has proved to be a good thing for me, I think. While some probably are struggling with having had more time with their thoughts, I’m (mostly) grateful for it. Aloneness, conversations with a select few, some good books and a surprise friendship with a blast from the past have all propelled this healing forward. And others are healing too. Three people reached out to me after seeing the book “How To Do the Work” by Nicole LePera on my coffee table in an Instagram post. Maybe this time has beneficial for more than just me.

While I’ve worked most of the last year, I tried to take advantage of those weeks of unemployment, spending time with James in a way I’ve never quite been able to. Since I’ve been back to work, I’ve been busier than ever but I’m finally finding some balance after a change in our parenting schedule and figuring a few things out with my cooking schedule.

I’m navigating the idea of cooking less and doing more birth work, which is imminent. Other than a friend’s recent birthday, I’m not going to do any parties or weekend work unless it’s something I just can’t say no to. Sundays are now for James. Mondays and Tuesdays an insane amount of cooking. Then on call for babies most of the rest of the week. Starting now, my partner and I are taking over the birth doula practice of my mentor, who will soon start a six-month maternity leave after the birth of her sixth baby. She normally does 4-5 births a month and we usually have 2-3 a month, so we’ll be busy. Last week two very busy doulas also decided to hang up their birth doula hats, so that might bring us more mamas too. I. Am. Ready. Bring on the babies! It’s not easy or all baby-snuggling. But I truly feel at home and that I’m making a difference when I’m supporting a family in this way. Seeing them move forward into parenthood with peace of mind and confidence changes both of our lives.

Health-wise, there is nothing new. The ovaries and tubes are out and are healed. A few weeks later I had some high-grade, pre-cancerous cervical lesions removed. Other than total panic over the course of a weekend during which I read “Did not get clear margins — ALERT” on my chart with no call back to explain I was FINE for several days, it was uneventful. Daniel took me to the procedure and Claire stepped in to pick up James from school when they called that she was in the office with some allergy symptoms. That was a nutty day including my alternator on my car going out and texting with clients until the second they wheeled me into the OR like in the movies almost. Ha. But it all worked out.

I graduated from ever having to see my oncology surgeon and radiation oncologist ever again. Still figuring out the osteopenia stuff. I will likely start Prolia ever six months soon. Fingers crossed the side effects don’t hit me hard and I move forward with no additional challenges than I already have. Then my regularly scheduled six month check-up in the fall.

By that point, Claire will be in Seattle, beginning her first year at University of Washington. James will be in second grade, hopefully in person all day — please and thank you. And I’ll keep doing what I’m doing, one day at a time. <3

I'm Perfect

Hello! I thought I would update before now, but I really did try to do nothing while I was recuperating and I guess that included an update here. It’s almost 9 a.m. on Monday, so you’ll see this in about 24 hours.

The surgery went just fine. I’m so used to major surgeries and this was so minor in comparison. My friend and I arrived at 9:15 as instructed, but they didn’t call me back until about 10:45 (I think — my pre-surgery ritual of taking a Xanax had more time to affect me during the wait and I was pretty out of it by the time they called me back!). They got me all suited up, the doc came and chatted with me and that was that.

It was a pretty short procedure. I’m not sure if I woke up WHILE they were extubating me or whether it was after, because I didn’t yet have my eyes open and was just waking up, but the first thing I remember is choking and gagging and coughing and my nose and eyes running because of it. I remember a nurse (or someone) saying, “I know, it’s not fun.” My nose continued to run and be stuffy all day and I had to fight sneezing. Hours later I eventually gave in to a sneeze and — wowee. Not fun. Sneezing and my level of pain has become my barometer for how I’m feeling on any given day.

Anyway, my friend got me home in the afternoon and went to pick up my prescriptions for me. Then another friend came and got me settled, created my nest on the couch, and ran to get me dinner. The next day Daniel and James came to check on me and bring me smoothies, which was all I needed/requested. Each day dinner magically appeared from near (a neighbor) and far (a friend in LA). Some of you lovely people sent me Grub Hub gift cards online which has been amazing. Even last night, after a very busy day of online meetings and trying to prep for my crazy day today, I was able to use what was left and have some Ethiopian deliciousness delivered. So, THANK YOU.

While I had hoped to, by some miracle, work last week, it became clear over that weekend that it wasn’t in the cards. And, to be honest, if I didn’t need the money I wouldn’t cook today either. I had some very generous surprise gifts come my way last week and you will be getting a personal thank you obviously. But these acts of love and generosity really touched me. Having surgery around the first of the month wasn’t the greatest, but I got through it and will move forward from here.

I spent that first week on the couch, mostly watching documentaries and burning through a couple of series. James was at the house that first Saturday and, while being less demanding than a 7-year-old usually is, it was still a lot. Getting food and drinks, having to bed over to wash hair, etc. By the time her dad picked her up the next day I was ready to recline and did so until her return last Wednesday.

Reclining is still how I’m the most comfortable. Out of my three incisions, only the biggest, almost over to my left hip, is still painful. Maybe painful isn’t the right word. Somewhere before pain and “very tender.” There was a bit of bleeding for a few days after surgery, but that has stopped.

Emotionally and mentally, I am good. It’s over now and hopefully I won’t require anymore surgeries — at least for this. James talks a lot about wanting a baby brother (it used to be a sister, now it’s a brother). I’ve been surprised at how the reality of me not having another baby has sunk in for her this last week and the amount she has talked about it. When I think back to how over the moon excited I was when my sister’s first born came along, I can only imagine what she will be like when she becomes an aunt.

I think they are testing my ovaries for all the things for funsies and I’m not expecting anything to come of that. I have my post-op appointment on Thursday.

I had my four-month check-in with my oncologist on Wednesday. They keep saying I’m graduating to six months then keep scheduling me for four months so I’m glad we got it straightened out this time! I saw Jen, the PA, who is a real character, but has taken good care of me as well. She examined me and looked at my bloodwork and everything was great. In fact, she said, “You’re perfect.” Nobody has ever accused me of that!

This was the first time I’ve seen them since I had my bone density scan in December. That scan showed that there has been further degeneration of my bones. Part of this is from chemo and the ongoing threat is the aromatase inhibitors that I take daily, which stops my body from absorbing estrogen (from outside sources, etc.). So, it’s still classified as osteopenia. The goal is to have it not progress to osteoporosis, under the assumption that I’m going to be here for a few more decades and need my bones to hang in there!

I know I’ve mentioned taking something for this in the past and having to get clearance from my dentist to do so. James and I are scheduled to go to the dentist in a couple of weeks, so at that time I’ll get a letter from the dentist (hopefully) saying my mouth is in good shape. A main risk of these drugs is the bones in your jaw breaking down. Fun! Apparently that happens when there is any type of oral issue or infection happening and they recommend not getting any major dental work while you’re on these drugs. SO, I have to get the all clear from him first.

Then I and whatever insurance covers will decide which time I get. There’s one that is a shot twice a year and another that is an IV once a year. OBVIOUSLY I’d prefer the IV but holy moly the list of potential adverse reactions is intense!

In addition to osteonecrosis of the jaw, for the shot the common side effects are: fatigue, nausea, decreased phosphorus and muscle weakness. Less common side effects are: diarrhea, shortness of breath, low calcium, cough, joint pain, headache, limb pain, back pain, eczema and rashes.

For the IV the most common side effects are bone pain, nausea, fever after infusion, fatigue, anemia, vomiting, constipation, flu-like symptoms after first treatment. The less common side effects are all the lest common side effects for the shot and about a dozen more, including muscle pain, dizziness, decreased kidney function, insomnia, weight loss, anxiety, depression, UTI, confusion, reduced sensation of touch, hair loss, yeast infection, low BP, chills, heartburn, chest pain, mouth sores, rash….. and the list goes on and on.

So, the decision seems obvious, I guess? I guess I could wait to get my first shot until my appointment in October so that the shots would line up with my existing visits. I know having to go four times a year doesn’t seem like much, but I am so. sick. of. being. in. that. building. I would love to only enter the cancer center twice a year. But, we’ll see.

I also had many questions answered, some of which are minor, but that I always forget to ask when I’m there.

Next steps: I will stay on the aromatase inhibitor (which right now is Letrozole) for either 5 or 10 years. I’m at three years now. At around 4 1/2 years, they will dust off the slides of my tumor and check its DNA. From that there will be a definitive answer of take this for five more years or there will be no benefit to taking it for five more years.

Whenever I stop taking it, I can stop taking the osteopenia meds most likely.

Then I continue to see them once a year at that point. “For the rest of my life or for a certain number of years?” She looked at me directly in the eyes and didn’t say anything. “Yes, for the rest of your life.” Of course I read into this. Is this because I am at high risk for the cancer returning? Do you expect me to not be alive very long? All those things go through my head. Is it stupid for me to save for retirement? Why can’t I just win the lotto so I can relax and enjoy my life before I die?!?!?

This is the game of cancer.

Alas, that’s not reality. There are bills to pay and summer camps to save for and a 13-year-old car and rent’s in the mail. The owner of the commercial kitchen just called and said I can get in the kitchen a little earlier today, so I’m going to hustle and try to get in there a couple of hours early. I picked up a double shift tomorrow and may add another on Friday.

No matter how long I’m in this body this time around, I ready to move ahead. Not move on, because I can’t. This is my life. I’m forever a cancer patient. I’m sorry/not sorry if me posting cancer jokes on IG makes you uncomfortable. But when it’s your life, they’re funny! Kind of. And I have a lot of “cancer friends” now.

I’m involved in a new (to me) organization called Twist Out Cancer. This has been a very long update, so Im going to post about that another time soon, but I’m thrilled to be both on this year’s Host Committee AND as one of its survivor “Inspirations” for its Brushes With Cancer annual event. My first meeting yesterday with the artist I was paired with already was therapeutic. Look out if you own a business — I might be sending your sponsorship information soon. If you feel called to sponsor — great. If not, no big deal. ;)

Losing Weight

Well, hello. Long time no talk. Nothing too incredibly noteworthy has been going on and we’ve all just been doing our best to survive the last 9-10 months since I posted, I’m guessing. Word is out to some that I’m having surgery tomorrow (today by the time you get this, I believe), so I thought I would do a little update.

The ol’ ovaries are finally coming out. Postponed by COVID like so many things. A little recap: my cancer was estrogen-fed. Ovaries = estrogen, so I’ve been getting a monthly shot for years no to shut them off. No periods! Yay! Expensive, uber painful “shot” in my abdomen every month. Boo! I had one a few months back was horrible. It’s not a liquid shot — it’s actually a hollow tube that injects a little bead that dissolves over 28 days (I’m sure I’ve explained this before… sorry for the repeat). Well, the nurse administering it hit a vein and it created a huge, painful, ugly hematoma. It took weeks to resolve. That’s when I hit my breaking point and decided it was time.

They said I had to schedule an annual exam and do another consult re: the surgery before I could schedule it. I was finally able to do that a couple of weeks ago and to my surprise they scheduled the surgery very quickly. I thought I would have a few weeks to figure out my schedule, set money aside for time off, etc. So, rent’s going to be late this month, but it really was the best time to get it over with when I looked at my schedule. So, oh, well. I’m happy to report that my doula partner for Detroit Doulas are getting quite busy! So, this way I just have to miss one meeting with a mama, which my partner will do alone on Wednesday, vs. having to make her be on call for multiple births, etc. at any point in the future. We have multiple clients every month, with the next one due on April 16.

I recently started cooking primarily out of a commercial kitchen — stacking three clients on Mondays and doing two in-home clients on Tuesdays (both have severe allergies, so I’ll do it in their homes). Those days are/will be intense, but it has enabled me to stay home with James on Wednesdays (she gets out of school at 10:30 a.m. — whacky, right?) and be available on the other days to do the work that happens behind the scenes — paper work, menu planning, scheduling appointments and responding to doula clients. And be on call for births without having to cancel chef clients. My house has never been more chaotic and cluttered as I’ve barely been home for months. My dining room is the central hub of both businesses and where everything gets dropped upon entering the house, but the rest of the house isn’t so bad. I’ve done what I can to prepare recuperate in a peaceful and clean home and will just close my eyes when I walk through the dining room.

Daniel has been picking up James after school (11:30ish until recently) all year and keeping her at his house until I’m done with work every day, so this way, he doesn’t have to do that anymore and can get his work done in peace — especially Wednesdays when she’s home most of the day. She’s still figuring out that even though I’m not on a call, etc. I am still working and a Wednesday at home isn’t the same as a Saturday. But we’ll figure it out. I continue to be grateful for the coparenting relationship Daniel and I have. He and I took the girls to an igloo at a Ferndale restaurant for James’s 7th birthday and we all had a great time.

A little update on Claire too — this incredible almost-18-year-old has college acceptance letters coming at her left and right, finished high school early and has been invaluable in watching her sister every Friday while I’m at work and pretty much every time one of us asks. She is so responsible, smart, funny and beautiful and I just couldn’t be more proud of her. James is already lamenting her leaving for college in the fall and so am I.

ANYWAY, the title of this post is a little wink at the fact that I’ll be losing my ovaries — will it reflect on the scale?!?! (Fun facts: they are almond-shaped and roughly 1.6” x .8” and weight approximately .3 oz each). Also, I think or maybe hope some of the weight that is present every month when I walk through that chemo room to get my shot lifts. This surgery is a tough one, mentally and emotionally. It should be the easiest physically. But every surgery takes me back to the beginning. Those early days of shock and a firehose of information coming at us. Sitting in my oncologist’s office for the first time, discussing whether to harvest eggs before chemo. Mourning the second child I would never birth. And not being able to breastfeed even if I were to. All of these decisions were made for me. And, yes, this one was too. Of course I could NOT get them out. Let my useless ovaries hang out in there and keep getting a $150 bill each month for the shot’s co-pay until I naturally go through menopause. But what kind of choice is that?

So, I found myself on my kitchen floor one night last week. Having an ugly cry. Feeling very alone. And that life isn’t fair. I grew up hearing “That’s life in the Marine Corps.” I never want to hear that again, to be honest. (Sorry, family.). It’s Ok for me to be sad. For me to acknowledge that life’s not fair and not have a tough upper lip as that phrase would suggest. Yes, so many things in life aren’t fair for anyone and everyone. And I know I’m supposed to be happy to be alive — AND I AM. But this — all of this — the stuff that comes AFTER chemo, after your scars heal on the outside. All of THIS has been the hardest part. And sometimes I still get angry about it. And want to have a tantrum like a child and shout that it’s not fair.

So, although I have come to terms with not having another baby and wouldn’t want to have another one right now even if I could, it still takes me back to that pain. To that overwhelming feeling of loss. And to the feeling that I have no control over my life. And my body. And how not a single person on the planet could understand how this feels even if they have gone through the same thing. So, it’s lonely. Even when you have a huge family and the most incredible friends.

And it’s nobody’s fault that it’s lonely — it just is what it is. And I think I’m a pretty strong person. “I’m fine” is generally the truth most days. Nobody probably pictures me sobbing on my kitchen floor. And I don’t know if this is “normal.” ARE people just happy to be alive? Or do they still get sad or mad or angry? I have aches and pains every day. Play “pulled muscle or bone cancer” on the reg, which can lead to an MRI which can lead to another medical bill, which can lead to taking the wind out of my sails when I thought I was finally, FINALLY getting ahead of these bills. So, no, it’s not fair.

It’s weird — especially in a pandemic — to not have a person — your person, who you know will be the one to take you to surgery, sit there all day, take you home and take care of you. To not have to think about that or worry about that would be a gift. I don’t have a person. And everyone is so busy and stressed right now and I know it. And with so few people knowing about the surgery and therefore nobody offering to help, I hated having to ask anyone to take time out of their days to help me. Who do I want to inconvenience who also won’t make me feel like I’m inconveniencing them? Because I just can’t deal with that right now. I asked the hospital if I could just Uber. Theys said no.

For once I don’t have to go at the crack of dawn. I reached out to two good friends and they are tag-teaming the day. So, I’ll head there around noon with my friend Melissa. Surgery is at 2 and should take about an hour. I suspect I’ll be home around dinner time. My friend Erin is going to come to the house to sit with me and bring me dinner. Another good friend set up a Meal Train and put it on Facebook, so I have dinner coming to me every day for a few days after surgery. I bought some fruit and veggies and other snacks and too many beverages of all kinds. I have a stack of magazines and books ready to go and we’ll see if I actually read them.

Physically, I think this could be the easiest surgery I’ve ever had. It’s laparoscopic and outpatient. Three incisions. Two tiny ones and one ovary-sized where they will actually come out. I guess they usually use your belly button but years ago I had an umbilical hernia and there’s mesh there, so she said it will be somewhere else. I’m supposed to lay low for 7-14 days. I haven’t canceled my cook day in the kitchen for Monday, April 6 and I’m hoping after six days I’ll feel well enough to do it. But we’ll see. I’m not going to risk anything either, despite my need to work. The hernia surgery — my only other laparoscopic procedure ever — was a real doozy, but I think this one will be much easier than that. After 24 hours or so I’m hoping I won’t be in too, too much pain.

So, I’ll rest up for the week. This is my first surgery that doesn’t involve my chest, so I’m hoping I might even be able to do some knitting. I borrowed some things from Melissa a couple of months ago to teach myself how to crochet so maybe I’ll finally have the time. Or maybe I’ll get my taxes together. Or maybe I’ll watch movies and sleep and play Scrabble on my phone.

It will be hard to lay around and not take care of the piles in the dining room. Or the tower of recycling on the porch. Please don’t judge, those of you dropping off food. Or do. Then grab some recycling on your way out!

Happy Spring everyone,
Kirsten

P.S. Just as we did with Valentine’s Day, James and I picked up everything we needed to make Easter cards about a month ago. We managed to make three and who knows if they will go out before Easter. A package for Gigi is sitting here on my dining room table that I believe contains her valentine. Thank yous for birthdays and Christmas have yet to go out. We love you, we thank you, we’re doing our best over here. <3

A Little Check-In

With everything going on in he world I’m not sure anything going on in my world is very important, but after six months I figured I would check in. I’m actually cooking for someone later today, but they asked me to come after Grandma feeds the 2 older kids while caring for the baby. We’re all trying to figure out how to navigate this new normal. I have plenty of work waiting for me, but how to figure out childcare, etc. is the current struggle. Daniel and I are working well together to figure it all out, as his work is ramping up as well.

Quarantine has been… a roller coaster. My doula parter and I (oh — she and I launched Detroit Doulas earlier this year — check it out!) had a client due mid-May but her birthing hospital (U of M) was the only one not allowing doulas still. The pandemic completely changed the doula relationship. Her anxiety about it all caused her to not even speak to us for about 6 weeks. It was bizarre but we did the best we could. Another client and friend ended up not using me/us as they quarantined in another part of the state. BUT now they are back at home and I’ve been doing some postpartum doula shifts with them. I tell you what, there is nothing like snuggling a newborn. I swear it’s better than therapy (no offense to my awesome therapist). It calms me, makes me feel centered and grounded and helps me put certain things in perspective. Perhaps I should be able to do that in other ways, but in the quiet of 3 a.m. with a little babe, it becomes more clear.

ANYHOO, Alex and I are certainly hoping to get more births on the docket for 2020. Many hours into labor, our doula client texted us at 3 a.m. saying she was devastated at how her birth was going and that she was now getting prepped for a C-section. It broke our hearts. Obviously if a c-section is necessary it’s necessary — it’s not just about that. But regardless, we never want a client to feel devastated and we just wish we could have been there to support them in person. That is part of why I am so committed to making the doula thing take off. It can make a big difference in a birth how a family’s journey as parents begins — mentally, physically, emotionally. It’s a weird time to launch something like this — a healthcare-related field, also in a time when many people are short on funds. It has my wheels spinning about becoming a non-profit so mothers who can’t afford it can have support too. Particularly mothers of color who have a much higher mortality rate in birth. Welcome to any big ideas (or donations — ha!) anyone might have.

Healthwise, I’m doing pretty well. I don’t remember the details of my last updates, but I switched my estrogen-blocker a few months ago in the hopes my side effects would be milder. And I would say they are. With the arimidex I had super intense carpal tunnel (making it hard to work) and intense pain in my hips most days. I felt like I was walking around like an old lady. Now I’m on letrozole (I think?) and feel a bit better. It’s mostly my feet, ankles and wrists that hurt. The feet are usually the worst, exacerbated by being on my feet all day when I cook, I’m sure. Basically, when I first stand up after sitting, etc., I have intense joint pain in my feet. So you may see me walk funny sometimes. It usually subsides in a minute or two or is at least tolerable.

Other than that, just the general tiredness, insomnia (as I weaned myself off my sleeping pills), hair loss. I think that’s about it. I’m still getting my monthly shots in my belly. My belly that is ever-expanding thanks to my meds and medically-induced menopause. My oncologist says there’s nothing I can do about that really. It’s just a side effect for most of us. I’ve gained quite a bit of weight. It’s not the number so much as the feeling, appearance and the fact that I don’t have very many clothes that fit anymore. I’m going to try to turn it around a little — just the fact that I can’t afford a new wardrobe! Just another way I’m not in control of my health still, which is frustrating. But I’m trying to embrace the change and accept it. I did buy some new scrubs that I can wear both for cooking and doula work off of Amazon and they are super comfortable.

I’m all set to get my ovaries out and thought I would have by now. Too bad I couldn’t get elective surgeries during COVID when I was out of work anyway. I need to take about 2 weeks off when I do it so I’ll have to wait a bit until I can catch up on some bills. As with many people during the pandemic, finances have been tough. I’m getting unemployment, which has saved me. It’s covered my rent and my insurance and the rest has gone to the wayside. My oncologist referred me to some organizations through the hospital that can help, but they are for people in “active” treatment and I’m not it. And that’s OK. I know a lot of people have it much worse than me. But there has to be a better way. When I’m working I make a good living, but I still have $12,000 in medical bills right now. Not to mention the root canal in my chemo-ravaged teeth that I’ve been putting off because of money. So, instead I’m in pain and also can’t begin the treatment to prevent my osteopenia from turning into osteoporosis, as it can destroy your jaw, etc. if you have any kind of infection in your mouth. (I think I explained this in a past post).

I say all this not to throw a pity party, but if this is my reality — with a good job, healthy enough to work, etc., what is happening for people who are not in my position? Because I somehow manage to pay my $700 a month insurance, my bills are “only” $12,000. And I can’t feel too sorry for myself because I know I’m a lucky one. But also, I can’t fathom scheduling another surgery when I already owe thousands of dollars for the last one, even though in the long run it would probably save money for not needing the $3,000-shots, etc. (of which I only pay a fraction because of my good insurance).

Just know that when you listen to politicians who want to improve our healthcare system, they aren’t just talking about helping people on unemployment or anyone some might see as needing a “handout.” They’re talking about me. They’re talking about people who are in a far worse position than me. OK, I’m starting to go down a rabbit hole and didn’t intend to get into politics here, but man this stuff can be frustrating for me, so I can’t imagine what it’s like for people who weren’t born into the type of privileged situation I was and continue to live in.

Alas, I will put my head down, take my tired bones to work on the days I have James covered and will work as hard as I can to provide for her, pay these bills and get us in a better position than we are now. I’m thankful to have a wonderful coparenting relationship with Daniel. We are truly working together with James at the forefront of our minds. A lot of people don’t have that either.

I didn’t mean for any of this to be a bummer! But there’s some real bummer stuff going on in the world. If it doesn’t effect you, it effects someone you love.

The good news is, I appear to have a clean bill of health. I had my check-up yesterday with the oncologist as well as getting my shot. Everything looks good. They are doing a COVID antibody test and I should get the results soon (unless no news is good news? Not sure). If I’m positive for the antibodies, I will have to go in for a COVID test to make sure I’m not an asymptomatic carrier. Just their new protocol. Granted we don’t know whether having the antibodies means you can’t get it again. But at least it means you either — got it and beat it or came in contact with it and managed to have no symptoms/beat it before it got bad, according to what they told me yesterday.

I hope everyone is well and healthy. I know so many of us have faced so, so many challenges during this time. I know mine aren’t the biggest. I’m grateful to have a healthy family, and supportive friends, family and coparent. I have plenty of food in the cupboard and work waiting for me. I still have no evidence of disease (NED — what people say instead of “in remission” these days.). And a bright light of a soon-to-be FIRST GRADER who rolls with the punches like nobody else I know.

Sunday will be four years since I got that fateful call. June 14 will never be the same for me. But in the days after I wondered if I would ever see my then 2-year-old ever go to school. So I guess I don’t have a lot to complain about after all. Stay safe everybody. Enjoy the sunshine. Stop and smell the flowers. All of that. And remember you have no idea what someone might be going through. Be kind and lead with love.

On the mend

Hello! Sorry to not write sooner. I avoided my laptop because of the work e-mails waiting for me, truth be told. Surgery went as expected — easy and brief. Because I was first up, I was out of recovery and in my room when it was still mid-morning. Groggy and on painkillers, I slept most of the day. My mom came to visit before going to get James from school, but even that is a little blurry. Durand didn’t leave my side — somehow not complaining about the pullout chair he slept on — complete with another chair he had to pull up to it for his feet because he is so tall.

I had a roommate for the first time since one day where I had to share a room back in 2016 before I was transferred to the cardiac ICU. Sweet as she was, the woman was a SNORER. Even with my pain pills I was up much of the night, as was Durand. We had to laugh in the morning when her husband arrived and she told him she slept great. I bet! The joke he told was perhaps worth it though. Through the curtain we heard, “These stitches are driving me crazy. There are so many of them.” He responded with “I guess you shouldn’t have been doing all that snitchin’ then.” Haha. (For anyone who needs it, a reminder about “Snitches get stitches” from childhood…)

The doctor came by to check me out about 6:30 a.m. and was happy with his work. There is again an incision under the left breast and one in the center, which goes from about the middle over to almost my armpit. I was released around noon and set up my cocoon of pillows and blankets on the couch at Durand’s house. He and the kids took great care of me while I invaded the hub of their home. I had a post-op appointment on Wednesday and Dr. Sherbert said everything looked great and he would see me in a week, with the reminder not to let anyone hug me very hard on Thanksgiving.

We headed to Ionia on Thanksgiving and had a nice time with the Balice crew. Looking forward to when Cousin John and I take down Cousin Tim and his girlfriend Emily on Christmas Eve with our Euchre tie breaker. It is weird to not have James with me on a holiday, but I truly got to rest and not overdo it like I probably did last year at Thanksgiving post-surgery. We had a quiet Friday at mom’s then headed back to Detroit on Saturday morning.

I went back to my place when we got home, which of course Tone left in tip top shape. Daniel dropped James off for a few hours at my request and I foolishly thought she would just be able to chill and watch movies with me. Hahaha. If you know James, you know she is a force and is more like having three kids. Within minutes fish food was spilled all over the floor. I convinced her to play magnatiles on the couch (not the easiest) and in no time I was squeezed completely off the couch when I got up to go to the bathroom, came back and there was no room for me to sit back down. There was no question true rest and recuperation isn’t possible with her around.

Hopefully I get the green light from my surgeon this Wednesday at my next post-op to resume all activities over the weekend and expected. I’ll be picking up James from school Friday and will have our normal parenting schedule from there. I’m set to go back to work Monday. Say a little prayer that I get the go ahead as predicted because I’m barely getting through this week and need to start bringing in the bacon! Tough to pass up all those great Cyber Monday deals today! And I always look so forward to the annual Detroit Urban Craft Fair but might have to skip it this year. (YOU SHOULD NOT THOUGH! It’s great — you can find something for everyone and support an indie artist or maker). For most of them — or at least many of them — this is their full-time job and they make amazing, quality stuff.

I am happy to have this last breast surgery behind me. One more to go — the ovaries. I wish I could have done it all at the same time. I’m tired of stopping my life, being away from James, being stretched thin with money, inconveniencing my clients and those around me. My OB said it should really only sideline me for about a week when I get them out. They called me to schedule it, but I told them to call back in a couple of months. Im thinking March maybe? I guess there’s no real rush, but I’m just ready. Ready to be done. Ready to stop getting this shot, get through menopause, and possibly be down to only one pill at home. Ultimately, it would save some money each month for the shot and pill co-pay I guess too. A couple of days before my surgery, I got a call offering me $100 off if I paid that day. So weird! But I guess it’s a business and they want their money.

So, I’m certainly sore — tender might be a better description — and trying my best to do next to nothing. I lay here on the couch and see so many projects around me — that’s the tough part of being home. I’m dying to stretch and go to the chiropractor, but it will be some time before I can do that. Dr. Sherbert gave me the OK to kind of lay on my right side, so that has helped me be a little more comfortable. Then I try to hug a pillow on the left to give my incision some space and to remember to be resting that arm/side.

I think part of the reason I’m ready to to get these surgeries over with is because part of me backtracks emotionally every time my life is halted. Revisiting feelings I had during treatment. Maybe it’s good and helps me count my blessings and be grateful for being alive and what and who I have in my life. <3

Surgery Next Week

It’s been a few months since I’ve checked in and I’m having surgery next week, so I thought I would post an update. I keep thinking I’ll have the time and energy some night, but my to-do list never gets completed and I just haven’t gotten around to it. I couldn’t get all my stuff around today before taking James to school, so I figured I would crank one out real quick while I’m getting ready for work.

I’m having another revision surgery on my chest next Friday. It should be the easiest of my surgeries to date. Only on the left side and isolated to my chest. I have to be off my feet and do nothing for 2 weeks, which will be difficult if it really isn’t very bad. My mom is going to come to watch James for the first few days. My boyfriend, Durand, will take me to surgery (and is insisting on spending the night there despite the fact that he lives about 4 minutes from the hospital!) and I will spend the first few days at his house recovering. Staying there as I don’t think I will get much sleep with James around, though I think she and my mom will visit me hopefully. I may just stay there until Thanksgiving. After my post-op appointment he and I will head to Ionia Wednesday afternoon and James will be with her dad for Thanksgiving and several days after. Still working on someone to help me out the second part of the second week on my days so he doesn’t have to take her the whole time and can actually get some work done.

If things aren’t symmetrical or looking great after this surgery, I don’t care. I’m done. It’s OK. The surgeon said he would like to do more fat transfer in a year or two after healthy blood supply has had a change to establish itself, so we’ll see about that.

I’ve also decided to get my ovaries out. I’m getting a $1,600 shot each month to shut them down, putting me into menopause. To me, getting them out seemed so final and unnatural. I wasn’t ready. I always wanted to have a second child. In fact, when I first had the pain in my breast that ultimately turned out to be cancer, the first thing I did was take a pregnancy test. Not sure if I ever told anyone that. To have a child now wouldn’t be safe or would require more money and effort than I can fathom. I’ve spent a lot of time mourning my baby that never was. I always thought I would have two. I loved being pregnant. And I was damn good at birthing that baby. I think that’s part of the reason why I wanted to become a doula. To be a part of the process and help parents bring their babies into the world in a calm (relatively!) and healthy manner without fear is so fulfilling. Anyway, more on that later, I guess. I won’t be having anymore children of my own and that’s OK. I still cry or at least get choked up every time I get my six-month heart check-up. The only time you hear that noise usually is when you’re pregnant and they listen to the heartbeat. And I still can’t go into a yoga studio because the last time I did (other than the 2 times I tried during treatment) was when I was pregnant. SO, clearly, I’m not over it yet. But I’m getting there.

As the recovery also is 1-2 weeks, I tried to see if I could piggy back it with this surgery, but I can’t. They have to inflate my abdomen and do it laparoscopically, so it messes up the chest field. I met with my OBGYN and will probably do it in a few months, when I can afford to take more time off . She said 7-10 days usually is plenty.

I had my six-month check in with my oncologist last month. Everything looks good and on Nov. 28 I’ll officially be cancer free three years, as it’s the anniversary of my mastectomy. Getting ever closer to that five-year milestone that is supposed to mean so much. Lately, I’m longing to have a day where I have no reminders. No aches and pains. No appointments and surgeries looming. Energy to keep up with James. Fewer pills and vitamins to take. I think I thought by now I’d feel more “normal,” whatever that is, but I’m starting to come to terms with the fact that this is my new normal. I guess sometimes I forget.

I try not to feel sorry for myself. And I try not to complain. But I have been straight up struggling lately and I can’t help but have moments of sadness or anger. But they are just that — moments — and they pass pretty quickly . The side effects of one of my medications I’m on — which stops my body from absorbing estrogen (more or less) — are finally affecting me. I thought I was the one person unaffected. Ha. Turns out, it’s cumulative and after 2 1/2 years of taking it, it’s hitting me hard. Among the side effects I’m experiencing: insomnia, bone and joint pain, neuropathy (also from chemo), carpal tunnel, fatigue, hair loss. In the last six months it’s all become unbearable most days. Or at least some days. And I don’t say that lightly. Again, I try not to complain, but I’m struggling.

The insomnia isn’t horrendous. I had my first doula client — a 40-hour labor that resulted in a beautiful baby girl on Sept. 26. While on call for that I reevaluated the need for my mild sleeping pill. I started taking it at a time of high stress, anxiety and, quite honestly, depression. I’m in a much better place emotionally and mentally now. If James wakes up I’m fine. I don’t take enough to even be unable to drive. But I would prefer to not be on it. So, with my doctor’s consent, I’ve weaned myself off of it. It’s been a few weeks and most days I do OK. I’m going to stick with not taking it for now. Get through my surgery recovery and see where I’m at.

I was diagnosed with carpal tunnel a few months ago. I have some pretty sweet braces I wear to sleep. I’m supposed to wear them when I’m “sitting around” too, but I really don’t do much of that. Being on my feet for 8+ hours a day and chopping, etc. isn’t helping. My right hand, wrist etc. is horrible. Some days it hurts to hold a pen, but I’m powering through. Sometimes, the pain is so intense I can’t sleep, even with a sleeping pill. The neuropathy isn’t as bad. I just have a numb fingertip or two from time to time throughout the day.

The bone and joint pain is getting worse. Mostly after sitting or being in one position for more than a few minutes. I’ve had multiple people ask why I’m walking “that way.” I often can’t sit cross-legged for more than a few seconds before I have to straighten them because the pain in my knees is so intense. I’m trying to keep up with working out, but it’s getting increasingly harder. That plus menopause in general is adding to my waistline, but I don’t know that there’s much I can do about it at the moment.

When I told my doctor at my appointment that I feel like “an old lady” (no offense to the old ladies reading this! Ha.) she said that’s exactly what everyone says. It’s expected and normal. She switched me to a different medication that does the same thing with he hopes that I’ll have fewer or less severe side effects. She said you never know when one will effect someone less than another. Bodies all respond differently to the slight variations. I think my hair is falling out less (I have about half the hair I had six months ago — it was coming out in clumps daily), but the pain, etc seems to be the same.

There’s one more pill they can try to see if that’s better, but I’m not getting my hopes up. I’ll have another appointment in two months so we’ll see how I am. I still haven’t started taking my drugs for my osteopenia because my teeth issues aren’t yet resolved. That is supposed to cause even more bone and joint pain, but I don’t want it to progress to osteoporosis at 41 so I’ll do what I need to do.

That being said, I am trying to figure out how to be on my feet less. After an extremely slow first half of the year at work, I’m busier than ever and beginning to catch up on bills and loans. I think six months from now I’ll be in decent shape. But I’m overwhelmed, staying up too late trying to get it all done and I’m tired. I’m so grateful to be working so much and busy again, but I think I’ll have to scale back for my sanity after the new year.

I’m trying to do things that support by body the best it can. I quit drinking almost three months ago, I’m eating well. I try to sleep more/get to bed earlier than I ever have. Some days my body decides for me — I’ve literally fallen asleep typing on my computer. I guess in some ways it’s nice that I can blame the medication, blame the cancer and know that it’s not just that I’m weak or out of shape.

So, I’m trying to pivot in my career to something that’s less taxing on my body. In a perfect world I would cook 2 days a week and take 2-3 births a month as a doula, so I’m going to try to make that happen. I have to find — well, first I have to find clients! Then I will procure back-up for my two cooking days and need to figure out what I will do if/when a birth happens on a day James is at my house. Taken only 2 or three births a month means more quality time with her, and a less harried, more patient mom, so I’m hoping any time away from her at a birth would be worth it. During the one birth I did in September, she asked Durand, “Why is my mom helping another family instead of being here with her own family?” (paraphrase). OUCH. I can’t cook full-time and doula, so I am trying to put myself in a position that is best for both me and James, while still making enough. Adulting is hard, huh?

In the last few months, I’ve watched “cancer friends” I have made get horrible diagnoses and one even passed away. She left behind a teenager who is struggling and a little one who will probably never remember her. Another went in to get a hysterectomy — she was going to get her ovaries out but she was having a lot of unexplained bleeding so they decided to do a hysterectomy. She woke up from surgery to learn they had found her abdomen was full of tumors. She has two elementary age children and is recently divorced.

I know it seems like I’ve complained a lot in this post, but really, I’m just explaining what’s the latest with me. The reason why I don’t walk around complaining or even feel upset by all of this most days is because I know I’m lucky. I’m happy. I’m healthy. And I’m alive. I have a lot to be thankful for and that’s not lost on me for a second.

I hope everyone has a nice Thanksgiving. Count your blessings on that day and every day. I know I will be. <3

7-Month Check-In

Today I parked in the back parking lot of the Rose Cancer Center and raced up the back stairs to get to my appointment for my monthly Zoladex shot. I wasn’t winded. Like, at all. I was eager to get the appointment over with. You know, because I have THINGS to do. Cancer’s not my job anymore.

I know the drill and they know me (even though every single person there still calls me Kerr-stin). Get my weight, take my temperature and blood pressure and send me off to the nurses in back. Where I used to sit for hours on end getting chemo. Now I’m one of those people I used to watch, with jealousy and curiosity, as they popped in and popped out. They had graduated out of the hell I was living in. Today I was one of those people. Who pops in, gets a quick shot in the private room then pops out, smile on my face and pep in my step, with a “See you next month!”

On my way out I passed a woman sitting in the hallway. She was extremely skinny. Wearing jeans and a long-sleeved shirt despite temperatures over 80 degrees outside. Her head wrapped in a colorful scarf. She looked up at me and smiled with the bluest eyes set against her pale skin.

I used to get depressed going back there. It brought up a mix of feelings every time I would go for an appointment. I recently graduated to seeing my oncologist herself once every six months. It started as one, then two, then three then four. I got to skip right over five and I’m on six! I don’t have to see her until OCTOBER. It’s not lost on my how far I’ve come, in many ways. I used to worry when I would be back there — not if — despite what I might have said to any of you. I don’t feel that way anymore. I earned that f’ing pep in my step. I have crawled by back from the brink. Sometimes feeling the support of my tribe of friends and family and sometimes believing I was completely alone.

I’m one of the lucky ones. Who has people around her who will stop what they are doing to help — all I have to do is ask. And lately, I do. And I try to do as much for people in return as I can. But people in treatment don’t like to ask. So keep that in mind with others in your life. “:Let me know if I can do anything…” will likely go unanswered. Show up. With food. With a card. With a text. It’s true what Sheryl Sandberg said. Sit in the hospital lobby and say, “I’m downstairs if you want me to bring you up some tea or just want to know that someone is nearby. I’ll be here for 45 minutes.” (Paraphrasing). Or do the same outside of someone’s house. At least in my case, I felt like a giant inconvenience to everyone. To have a close friend say, “I’m bringing lunch today.” and then just show up with it — was phenomenal.

Once I was in the hospital going on day three or four. I hadn’t had a visitor or a decent meal in days. A “mom friend” of mine, on a Saturday night, texted and asked if she could bring me some good food. I couldn’t help but say yes. She had plans and couldn’t stay long. I know it’s a pain in the butt to park and navigate the hospital. She brought me the most delicious food from one of my favorite restaurants. I ate as much of it as I could and will never forget her standing there at the end of my bed. Or the time I was tethered to my bed in the Cardiac ICU at 8 a.m., bleary eyed after having an extremely chatty nurse sit down next to my bed after taking my blood at 5 a.m., when in walked the father of a college roommate who now lives nearly 1,000 miles away. He had a bouquet of flowers and a cheesy magazine at her request. Those are just three examples of the tiny things you can do when you feel like you’re powerless to help someone.

And to those of you who didn’t or couldn’t, I get it. Or at least I try to. Not everyone could stay so close to the fire. I’ve read countless blogs about how some people can’t handle it and how some people disappear when times are tough. I’ve had a bit of that too. A young mom being diagnosed with aggressive cancer is hard and stressful and uncomfortable forces people to realize that it can happen to anyone at anytime. When I think about that, I’m glad it was me. Because apparently I could handle it. And I’m hopeful and confident that I’ll never have to “handle it” again.

I started typing to just give a little update. But I suppose I’ll leave all of that. It’s been 15 months since I’ve had any type of infusion. In November it will be three years cancer free in my team’s eyes (the day the cancer was removed via my mastectomy). Every year that passes is another year of hope. Another year toward the 5-year milestone. Another year of research and new discoveries than can help should my situation change.

Every headache and pain is a concern. Every show and billboard and license plate with a little pink ribbon reminds you or brings you back to it in some way. Will I ever see a pink ribbon or watch a show that has a character with cancer and it doesn’t phase me? I’m not sure. I’m just taking one day at a time. Trying to be the healthiest and happiest I can.

In December I was diagnosed with Osteopenia. Chemo and the current pill regimen can cause it, the precursor to osteoporosis. It’s worse in certain areas than others and does increase my bone breakage risk. They say you can’t reverse it, but a new shot I will be getting apparently can keep it from not getting any worse. I have talked to a couple of people who say they have it and it’s no big deal. Yes, but they are decades older than me. I have to keep this stuff in check hopefully for about 40-50 more years.

This particular drug can cause major problems and quickly if you have any sores/infections in your mouth. Like the infection can multiply quickly and you can lose parts of your face kind of problems. Because a couple of my fillings were a little loose, we decided to replace them before I started getting the Boniva. I had all of my fillings replaced and, unfortunately, one didn’t replace well and I had to get a root canal. The tooth next to it is also now messed up, but I’m going to wait to address it until my cleaning in August and am holding off on the shot until then. I wish I would have left well enough alone — it’s turned out to be a stressful, lengthy, time-consuming and expensive process. But I can’t get the shot until I have everything fixed and healthy and apparently that’s quite an undertaking.

Other than that, all has been mostly fine. I’ve been having a lot of hip pain since last fall. Long story short — it’s not cancer, it’s not joint pain from my pills (I have that in other areas) and it’s not any kind of ligament or tendon problem. It seems I have a bit of bursitis, but the doc doesn’t think that’s causing the pain either. It seems to be a muscular problem. It’s very painful, every day and frustrating that I’ve seen no improvement with the methods and ideas they’ve given me. One massage therapist at my chiropractor is going into sports massage and has had some techniques that are definitely working on it (hurts so much but I know it has to help!). Unfortunately, I can’t always get in with him, but I try. He works at a spa in Birmingham too but insurance doesn’t cover that, unfortunately!

I may be looking at another surgery this fall. My plastic surgeon wants one more crack at getting my chest looking better (and so do I). The way everything settled isn’t great and doesn’t look that much different than before September’s reconstruction revision. It looked so amazing right after surgery! After the dust settled, there’s too much fat that was transferred and a lot of asymmetry in size and location. I know lots of women have uneven breasts, but it’s relatively extreme now. Not to mention over the course of the decades as the skin my left side ages and loosens. We’re meeting to go over it at my appointment in August and we’ll see. I’d like to get it done, just not sure it’s a smart move financially. Maybe I’ll just have to wait a bit.

Business was incredibly slow for a few months. Like I’ve never experienced in my years of being a personal chef. And being a single mom with an ever-growing stack of medical bills is no joke! So, I did what I needed to do, put on my big girl pants and got myself a waitressing job. I just started and the Fourth of July is screwing that up a bit (they close for a week). Then, just like that, business is back! I literally have 2 open days in July I think. I’m booking parties left and right and get several e-mails a week. I’ve experienced generosity from some of those around me in various forms and I’m so, so grateful for it. It will take me a few weeks to truly get back on my feet, but I’ll get there.

I also just joined a long-standing, respected group of doulas. I can’t say much about it now — it’s not public information yet — but I’ve just taken on my first client who is due in late September . I’m SO happy to be utilizing my training and helping moms and babies with an incredible group of women! We are still planning our attack — who we are hoping to serve and how. It’s very exciting, inspires me and I can’t wait to share more.

I’ve also been in talks with my oncologist and some folks at Gilda’s Club with an idea of being a “cancer doula” — for lack of a better name at the moment. People who don’t have someone to accompany them to appointments. Or who don’t want to go to a support group but could really use someone to talk too who knows (or has a better idea) of what to say and what not to say. (Some real doozies come my way — still!) Someone to run to the pharmacy, or make them some homemade food. I haven’t figured out all of the details yet, but it’s rattling around in my head and being discussed.

I was a part of Gilda’s annual fundraiser, “Gilda’s Big Night Out.” They had asked me to be a part of a short film they produced and it played during the program, before the big auction. A comedian originally from Michigan, who now writes for The Daily Show, performed and was hilarious. I’ve been approached about “modeling” in their Bras for a Cause fundraiser in October and said I would do it. As I would rather have people I know seeing me walking down a runway in a bra than strangers, maybe I’ll make you all attend. :)

I guess when you don’t do an update in 7 months it’s a real doozy. Ha.

I suppose in a couple of months I’ll have more info on the surgery situation. Until then, I’m just going to keep moving forward — working, taking care of my wild woman and looking forward to a bright future. Saying yes to all the opportunities and seeing what sticks. Thanks for all the love. <3

Long time no talk...

Well, no news is good news! At least in this case. I can’t believe it’s been since June that I’ve written. To be honest, there has not been much excitement in Kirsten’s medical life since I last wrote and that is a good thing.

I had a couple of concerning things going on that got checked and were nothing. I had a full body workup a few weeks ago and there remains no evidence of disease which is (obviously) great! My numbers all look good, etc.

I had my surgery, as planned, on Nov. 9. I’m currently holed up in my sister’s spare room, which is far more comfortable than my bed, truth be told. The surgery went according to plan. He fixed up the wonky side and then did extensive liposuction throughout my abdomen (and love handles!). I had gained 15 pounds to supply enough fat for the surgery and it worked. He said he had just enough and used every last drop(?). Without the weight gain, he said he wouldn’t have had enough. So, wearing pants that are far too tight and having a floppy belly for two months was worth it, I suppose. :)

Now my stomach is the flattest it’s ever been and hopefully someday soon won’t feel like a giant bruise. Lipo is no joke — I’m far more sore from that than where I have my incision (though that doesn’t necessarily feel like kisses either). My incision isn’t healing quite right — much like one of my incisions from my mastectomy didn’t. But this one won’t have to be surgically repaired like that. I’m putting a special cream on it and hopefully it heals right up in the next week or so. Because up to 50% of the fat dissolves, he put extra on the side he was repairing, so they remain asymmetrical for the time being. But Dr. Sherbert said that should work itself out in the next couple of months.

He is letting me drive James to Ionia and back for Thanksgiving, but other than that I’m to remain on the couch/in bed. We’ll stay in Ionia for a few days so I can get some help with James — welcome one and all who might want to entertain her! Then we’ll return home and I’ll stay in bed the following week.

I see him again on Dec. 1 and hope all will be healed up enough to get the green light to go back to work. As it is I’m taking one more week off than I thought I would have to, so hopefully I can get back to it on Dec. 3.

This is the first time I have had surgery when my body was actually well and strong. Before it was par for the course for me to be laying around and feeling yucky. While I’m quite sore, it’s admittedly a little more difficult (and guilt-inducing) to be laying around doing nothing. Other than the lipo, there was no actual surgery on the right side, so it’s been nice to have one arm I can kind of reach with, pick things up with, etc. Huge difference, in terms of sitting up, getting dressed, bathing, etc.

That’s about it! Sarah, Loren and the boys are taking good care of me and I get my own private concerts when the boys practice their Christmas songs on the piano down the hall. My tea gets delivered to me within minutes of waking up, not to mention meals and water refills. They better be careful or I might not ever leave.

This should be the last time I have to go under the knife or have an extended period in bed for a long time, unless/until I decide to have my ovaries out, etc. My doctor is giving me some time to breath if I want. I think I’ll give myself a little bit of a break for now. ;)

I’m looking forward to being around family and eating too much of my mom’s pumpkin pie this week. Have a nice Thanksgiving, everyone!

Kirsten

Two years.

It's hard to believe it's been two years today (Thursday, 6/14) since a single phone call changed everything. I remember the details of that day as if it were yesterday. It's been a long two years. It feels like it's been much longer than that. 

Though I continue to have little complaints here and there, overall I'm doing well. The neuropathy in my hands and fingers is better but still present. My nails are still splitting and breaking and useless. I can't even take the stickers off of my fruits and vegetables at work most days because there's just nothing there. It's not as painful as it used to be though, so I guess that's good. I'm continuing to take a few medications (and a million supplements) and am really sick of swallowing pills.  Better than taking in chemo, I suppose, so I guess I should just pipe down.

I'm also still getting my monthly Zoladex shot, which shuts down my ovaries, putting me in menopause. I still get frequent hot flashes, but they are milder than they used to be, thanks to one of my medications. They feel especially punishing while I'm working, though, when I'm already hot. I'm going to keep doing it for now and not remove my ovaries yet. I already have one more surgery on deck and don't want two right now. 

I'm going to have surgery in the fall to do some reconstruction repairs. Things have settled and are quite asymmetrical at the moment. The right side is tight and smooth due to radiation. The left side is looser, lower and lumpy/rippled. I have some choices to make regarding how involved I want it to be, but the recommendation from Dr. Sherbert is to go in via my existing incision from reconstruction on the left side, push things up and sew things into place, then do liposuction on my belly and use the fat to fill in the lumpiness. I would like to follow that recommendation, though there is a slightly longer recovery if I do the liposuction, which I understand is pretty brutal. Let's just assume I'm going to live to the average life expectancy -- I want to look and feel as good as I can and not feel self-conscious for the next 45 years (85? I have no idea what the average life expectancy is these days). While he mentioned September, I may push it off a bit to have more time to prepare to take two weeks off of work, etc., but I want to do it in 2018 because of insurance deductibles and out of pocket maximums and whatnot. Then hopefully that will be my last major procedure for a long, long time. 

I'm working a lot and really enjoying it, more than I was pre-cancer, actually. I adore all of my clients. Every single one of them has some type of dietary restriction that complicates mealtime for them and I'm happy to make life easier. They all regularly express their appreciation and I think that helps me feel the job is worthwhile also. From dairy-free to gluten-free and all kinds of allergies, they keep me on my toes. One client is allergic to nuts, soy, gluten, dairy, eggs, beans, peas, oats, mustard, avocado... I think that's it. When I started my business, those restrictions would have overwhelmed me, but it's really not so bad! The one who's allergic to garlic just breaks my heart though. ;)

Starting my doula business has kind of been put on the back burner at the moment, but I am moving forward. A friend is finishing up my logo and I've registered my business and have a domain secured. Hopefully soon I'll get around to creating my actual website. I couldn't make it to my final training in May, but there's one available in October, so I switched the date. Maybe after that I'll be more ready to really move forward. I hate to say it, but unfortunately, I can make more money as a chef, so that takes the priority right now. I'm grateful to have a successful business, clients I love and a waiting list of people hoping for my services. I just spoke to my first "real" doula client today, though, which was great. 

OH! I almost forgot. I had a brain MRI several weeks ago. Just standard protocol a few months after the one they ordered at Christmastime. It showed no changes. Excellent. Of course, I wouldn't have minded if it had showed some improvement in the brain damage from chemo, but oh, well. My routine heart check showed everything is working well, so that's good. I don't have to go back to my actual cardiologist for a year. 

I had my first 3-month check-in in April and everything looked good. No sign of anything concerning. My blood pressure has been quite high for the last few months and last week, when I got my shot, it was in a normal range, fortunately. The last thing I need is another medication! 

My hair is getting longer and is curly as ever. I'm going to have to post a picture soon. It's pretty out of control! One year of hair growth, with curls, is not all that long. But at least it's sort of, almost, starting to look like something resembling a hairstyle a person might actually choose. ;)

Ooh! Almost midnight. Going to cross my fingers and post this so it will hopefully go out! :)

That's All Folks

I'm officially done with infusions! I had my last infusion on Jan. 31 and it went fine. Again, no bell-ringing, no parade, no party. Weird. :) 

I had not been feeling well the weekend before -- like in bed for three days which I NEVER do -- so they swabbed me for the flu even though I had been feeling better for a few days. Come to find out the other day -- IT WAS POSITIVE. The rapid test was negative, so they never contacted me. Then the longer test (10 days I think?) came back positive for Influenza A, but, at that point, it had been 2 1/2 weeks since I initially felt sick, so I never knew until my appointment a few days ago. I guess I'm glad to have a little validation for really how horrible I felt that weekend and I'm breathing a HUGE sigh of relief that nobody I spent the following weekend with caught the flu from me while we were holed up in a big log cabin up north. 

Daniel and I met with my oncologist last week to check in and discuss what's next (which is when she told me about the whole flu test debacle). She told us about a new pill approved by the FDA that is supposed to target HER2 cells. As a reminder, 1/5 of breast cancer folks are HER2 positive. The discovery of this designation and drugs targeting it are relatively new. Because HER2 patients are more likely to have a recurrence and have a higher mortality rate, new drugs (like the Herceptin and Perjata infusions I just had 17 of each) are a good thing!

BUT this pill is brand new. Its approval is based on (as far as I can tell from Googling) exactly ONE study. That study seems to say that chance of recurrence went down 10 to 15 percent for patients who took it for one year. My doctor said 60 percent of doctors aren't even telling their patients about it. She was not doing the hard sell and said she would be fine with me waiting until there is more data. If she was 100 percent positive it would have an impact, I would trust her. But she really wasn't sold on it, so neither am I.

OH, not to mention the main side effect is horrendous diarrhea for the first 56 days. So horrible that they would have to check me for CDIFF as often as the hospital allows (every other week) to make sure it's just from the medicine and not CDIFF. Yeah, no. That particular side effect has been the bane of my existence for the last year and a half and I finally am doing better. I need a break. (Add this to the things I never thought I would talk about publicly). 

I've since read up about it and it says it was used on women who had early-stage cancer. I had stage 3b -- not early stage. So, the study doesn't even include women like me. The number of recurrences out of the less than 3,000 women studied two years out are almost identical. And the other possible side effects are the following, according to breastcancer.org: 

"...vomiting, nausea, abdominal pain, fatigue, rash, and mouth sores.

In rare cases, Nerlynx may cause serious liver problems. Tell your doctor right away if you have any of the following signs of liver problems:

• yellowing of the skin or the whites of the eyes
• dark or brown urine
• feeling very tired
• loss of appetite
• pain on the upper right side of the abdomen
• bleeding or bruising more easily than normal"

Nope. Not today. She said we'll revisit when we meet again in two months, but I'm thinking more like 6 or 12 months. We'll see though. 

In more exciting news, I GOT MY PORT OUT YESTERDAY. My sweet friend Stephanie drove me there and stayed with me until I went back for surgery and Daniel picked me up. Going in it was pretty brutal during the surgery. Though I assumed it would be easier coming back out, the nurse noticed they had to give me additional sedation in the middle of surgery last time, so they just gave me extra to begin with this time. Unfortunately, I felt that first cut! I was definitely groggy, but said, "Was I supposed to feel that? It stings." Clearly, I wasn't feeling exactly what was going on, but they gave me another bump of sedation and I was barely awake for the rest of surgery.

I slept most of the day after and have been pretty sore and groggy today. It also itches a lot, but I think that's the steri-strips -- all hospital tape type things seem to make me itch. 

Not much else is going on. I finished up my few weeks of physical therapy and am armed with lots of exercises I need to be doing so that my strength and range of motion with my right arm increases and the pain with it decreases. I've talked to people who are still really uncomfortable a couple of years later, so I better put int he work and help myself out. 

After surviving all of my treatments without it, neuropathy has arrived to rain on my parade. It started several weeks ago, coincidentally when I started physical therapy and went back to work... My fingertips on my right hand are always tingly and numb and some days are better than others. There was one day a couple of weeks ago that I went to the chiropractor AND had a massage in the same day and that's literally the only I haven't felt it. Again, it mostly sticks to my fingertips and fingers on the right hand, but there have been a few days that it hurts to grab things and particularly hurts to bend my index finger. I shake my hand, as if that's going to help. So far it's not quite as bad as it was when I was 8 months pregnant and had to quick working because I couldn't get a good grip on my knife. 

I'm not sure what to do about it and forgot to ask my doctor (dumb, I know). I have to go in for my shot next week and maybe I can pull someone aside really quick if she's not too busy. I know some people who have gone to acupuncture and I'll be seeing my natural doctor when we get back from vacation, so I'll see what he can help me with. He's a magician, so I'm sure he'll figure something out. 

Speaking of vacation... last summer a coworker of mine from almost 20 years ago at the Lansing State Journal nominated me to receive a trip through the organization Waves of Grace and they picked us to receive one! We had our choice of properties and picked one with four separate cabanas so I could invite my family, who has done so much to support us in various ways during the last 20 months. My brother, Joe, and his family and my sister, Sarah and one of her 3 boys with be joining us. We'll have our own private, heated pool, and the organization pays for me, Daniel and the girls -- including a family photo session on the beach. I feel really lucky to have been given this opportunity to enjoy some time with my immediate family and my siblings, to relax, have fun and celebrate all the good things we have going in our lives. 

If you have a vacation property, you can donate a week to someone just like me! I don't know how it works, but check out the Waves of Grace website. 

OK, it's almost midnight. Better wrap this up so it goes out tonight!* 

* That means I don't have time to proofread, so if there are typos... deal with it. :)

Long Time No Talk

Where to begin? Life was crazy through the holidays, then it kept being crazy, then it was too much to report, then... well, here we are 6 or 7 weeks since my last post. So, I guess I'll go in chronological order. 

I had an infusion on Dec. 21. While I was there, I mentioned how bad my chemo brain was and that I was getting dizzy a fair amount. I have heard chemo brain described as a combo of dementia and ADHD and I would say that's pretty accurate, from what little I know about those two things. I'm constantly forgetting what I was about to do, why I walked into a room or what I was going to get out of a closet or the refrigerator. I scan the shelves, hoping something jumps out at me. Daniel SWEARS I have seen Love Actually four or five times and I really, really think he's wrong. I don't know anything about it. Except that Laura Linney dances in a stairwell about something. I really don't think I've seen it. But maybe chemo brain? I can't tell you how many times a day I say, "Oh, I forgot." I'm sure it's as annoying to everyone around me as it is to me. 

WELL, she didn't like that very much. I mean, she didn't say that, but she said I had to go ASAP get a brain MRI, bone scan and chest and pelvis CT scan to check for mets -- i.e. whether the cancer has metastasized and there are tumors somewhere. Merry Christmas, am I right???

I had my brain MRI the next day. In various ways, it was a tough day, but our annual (except for last year) holiday party was that night and I was looking forward to it. I wasn't feeling well physically that day either, but I told Daniel I didn't want to cancel the party. I told my doctor I couldn't fathom waiting until after Christmas to find out the results and asked her if she could find out that day, right after. I texted her as instructed when I finished the test, then I texted her again just before the party started. Nothing. 

So, come 6 p.m. I had no choice but to change my clothes, throw some cheese and crackers out on the table and plaster a smile on my face. The smile was mostly genuine (unless I was left alone for too long with my thoughts) and I really enjoyed spending time with our friends. I stayed up for as long as my body would let me, but couldn't help but think, "Is this the last time that I'll naively get to have fun with my friends before finding out I have terminal cancer?"

The party was great, and the next day, Dec. 23, we set off for Ionia. Then around 4 p.m., just before heading down to our Balice family celebration, I got a text that said, "Congratulations -- the test showed no major brain abnormalities." A huge sigh of relief and instant tears. 

Then, wait -- no MAJOR abnormalities? What does THAT mean?!?! Turns out that means there are areas that show some brain "changes" (she won't say damage) due to chemo (resulting in 'chemo brain'), but no mets. 

I had the other tests the following Wednesday and got the official all-clear on Thursday, the 28th after a very stressful wait in the room where I was reading into everything everyone was saying and was pretty sure it was bad news. BUT, it wasn't. What a week! 

Then HAPPY NEW YEAR! We had a quiet New Year's Eve. Daniel wasn't feeling well, so James and I went to hang out with friends and their kids and were home by 9 or 9:30. Claire is officially too cool to hang out with her parents on New Year's. I guess I'll have to hold onto last year's hang, when we wondered what the heck was going on as Mariah Carey flubbed her own song in Times Square and we stayed up too late after the ball dropped. 

In the first couple of weeks of the month, I had a check-in with my radiation oncologist, who said I was looking surprisingly well and said he wanted me to do some physical therapy. I started that last Tuesday. It goes by quickly and my therapist Michelle is lovely. She's teaching me some great stretches that can help with the pain and limited mobility I have, especially in my right arm and armpit. I'm pretty sore for 2-3 days after, but I'm trying to keep up with my stretches and "homework." I go twice a week. 

Apparently I have something called "cording" which isn't muscle and isn't tendon, etc. -- it's been studied and they aren't exactly sure what it is. They think it's fascia (a thin sheath of fibrous tissue enclosing a muscle or other organ), like that thin clear layer you might find on your raw chicken breast, that somehow forms into a cord-type of a thing. It has been causing pain between my shoulder and elbow when I outstretch my right arm. I was instructed "if you hear a pop and feel a burn, that's a good thing," so I won't worry should that happen. 

My plastic surgeon gave me the go ahead to go back to work. I'll check back in with him in April and, depending on how things look, I might have a MINOR procedure/surgery done to make things a little more symmetrical. But maybe not. We'll see. I check in with my oncology surgeon for the first time in a year in 2 weeks and I expect that to be uneventful. 

I had an uneventful 16th perjata infusion and my LAST ONE is next week. Does anyone know where my parade will be after? I think after that I can get my port out (ya-hoo!) and I go to my blood tests every three months. 

James and I had spent the weekend in Pittsburgh visiting my brother Joe, sister-in-law Tatiana and their son, Clayton. We had an awesome, relaxing weekend. I'm so glad I finally got to visit them! They moved 2 months before I was diagnosed, so I never got a chance to visit before I was in a position where I didn't feel up for the drive (or had too many appointments) to get over there even after chemo. James was great in the car and it was an easy trip both ways. I can't wait to go back.

Although physically and mentally I don't quite feel ready to be back at work, I went for it. Monday was my first day back. My Monday clients are people I cooked for before I had James. In the few months I was on maternity leave, they bought a new house and gutted it, so they had no kitchen. Last year they contacted me and, a year later, they still hadn't found another solution (like all of my most recent clients did in the last year and a half). Their kitchen is amazing now and was great to cook in.

The day did not go as planned in many ways. James woke up with a fever and, since it was my first day back at work, Daniel was the one who had to put work on hold to care for her. I got to Whole Foods (about 30 minutes from my house, but near my clients'), and I had forgotten my clipboard with my shopping list, recipes, labels, etc. Because my phone recently was rebooted, I couldn't get into my software on it. Eventually I texted Daniel to text me pictures of everything because I was already running behind and couldn't spend an hour round-trip going home to get it, but he offered to bring it to me. I went off the shopping list picture he texted me and ran out to get the rest from him (in the pouring rain) when he arrived. 

Little did I know that his car was sounding a surprisingly loud alarm over and over again because it mistakenly thought a door was ajar. The brakes/muffler place next door to our house checked it out, but couldn't figure it out so he needed to get it in ASAP, which required me to get him and sick James back home from the dealer. I kept pushing my "I'll be done by" time until eventually it was nearly closing time. Long story short -- It took me 2-3 hours longer than I anticipated and than it used to take me to make my four entrees and side dishes (with a nosey dog and a cute baby distracting me as well). BUT I DID IT. I spent nearly 8 hours on my feet but I did it. I drank a lot of water, ate probably not enough food and felt pretty well most of the day. Not too many hot flashes and I'm on a little sore today. The second the adrenaline subsided and my butt was in that car seat I could have passed out though. 

I arrived home to streamers and balloons and a marching band congratulating me on my efforts. Ha! This is real life and we are parents of a sick kid and another one who was at practice. Instead we raced around to get Daniel's car to the dealer (who of course charged us a fortune, but that sound had. to. go.), got the three of us to the chiropractor, got James back home and in the bath, ran out to get Claire from practice, unpacked all my work stuff, ate half a bag of roasted peanuts (They were organic -- does that help?) for dinner, absolutely stopped putting away the dishes when James asked me to stop and snuggle her on the couch, put her to bed after she passed out, melted into the couch alone for a bit then, on cue, James woke up as Daniel and I were about to go to sleep. She and I spent a not very restful night in the guest room so Dan and Claire could get a good night's sleep -- she had her first ever high school exams today and he had even more work to cram into today (Tuesday) since Monday was a wash. Thank goodness I didn't have to work today. 

Why am I sharing all of these details? I'm sure all of you -- whether or not you have kids -- have had days like this. They are normal. Holy crap. I had a day that was normal. With work and sick kids and studying kids and groceries and appointments and baths and a fidgety, fevery little kicker next to me in bed who ultimately decided 5:40 was an acceptable wake-up time.

Over the weekend I was telling my brother about this song James LOVED when she was about 1 1/2. It had been a reference track for a spot Daniel was working on and she would ask him to replay it by pointing to his computer screen. We have video of her standing on his lap so excited it is on, shaking her fists and trying to clap along. As I was pulling up the road to my clients' house, about an hour after I hoped to be and feeling nervous, frazzled and tired before I even started, I switched on the radio and it was on. "Dog Days Are Over" by Florence and the Machine.

I don't know why she wrote that song or what it's even supposed to be about. But it seemed to be just about perfect yesterday. Two years ago, a day like yesterday seemed like one of those dog days. The stress and the worry and just an all-around tough day. But now I have seen tough days and yesterday wasn't it. Exhausting? Yes. Busy? Yes. A little harried? Absolutely. But that's life. And I'm living it. 

Ticker's Still Tickin'

I went in today for my quarterly heart ultrasound. The tech said everything is looking good. She had a tough time seeing my left ventricle -- just like last time -- because of the implant. Just as the other woman did last time, she's going to recommend I have a Definity scan. They inject you with this "milky substance," according to her, and it essentially makes the heart glow on the screen -- even through the implant. Last time my doctor saw enough of a healthy heart that she didn't have me do that. We'll see what happens this time. 

The woman doing my scan asked me a couple of questions, then repeatedly kept telling me to get nipples. Yes, they can make you nipples, which I keep telling my plastic surgeon I'm not interested in. And no, I don't want them tattooed either. (BTW, James seems to have been chatting with a few different people lately about how I don't have them and where they went. So be prepared if you run into her. Ha.) No judgments on anyone who gets them, but I don't need them and I just don't want them. Or another surgery for that matter.

Anyway, she asked how old I was, then kept saying, "Get your nipples girl." So I kind of felt the need to say why I don't want them and she would just interrupt me and say, "Get your nipples." I'm not sure if it's better or worse than the woman who has done the last few scans, who said such classics as, "I wish I didn't have to wear a bra," and "Ugh. Mine are so bad. I wish I could just get rid of them." Daniel's response to that idea was "How about someone who doesn't say anything about your body." Yes, that is a better option. 

At this point, my body doesn't feel like my body in many ways anymore. And it does feel like public property. So many people have seen me in various states of undress at this point. I mean, here I am talking about a very specific, generally private part of a woman's body on a public website. It's honestly barely weird anymore. But everyone does have an opinion or comment or is uneasy and doesn't know what to say. I get that. I'm sure I've been there and will be again. 

Make no mistake, this wasn't a "boob job" and having implants isn't the same as having the real thing. What my mastectomy was, was an amputation. I had two body parts amputated. That's why I can be so open, I think. I mean, they don't serve the same import purpose that a leg or arm does -- I get that. Sure, it's nice to be experimenting with new clothes and it has its benefits I suppose. Obviously I'm open to chatting with people. I just wish some people would think before they speak. I'm trying to do more of that myself. 

I feel like I sound angry or annoyed and I'm not. I mostly just shake my head and laugh these days. I know a lot of people read the article I posted on FB recently about how hard life is "after" cancer and reached out to see what they can do. I'm honestly in a really good place right now. I'm seeing a lot of things from a new perspective -- a better perspective and healthier place than before all of this. I think I'm just trying to help. People say dumb stuff to me all. the. time. And that's OK. We're all just doing our best. But know that just because you know someone who had breast cancer, doesn't mean you have to talk to me about her -- especially if the punchline after "she beat it and did great..." is "now it's back. In her brain." (True story). That's just not helpful. Those conversations are awkward for me too. I get it. And being in them is teaching me a lot.  

You would think nearly three months after surgery it wouldn't hurt very much, but I'm still really sore. In places you would expect -- like my incision sites -- but also the center of my chest, parts of my back, etc. I try  not to complain about it, but it's a little annoying. Makes sense that it takes time to heal and I'm PROBABLY not resting as much as I should be. I'm trying. It's a busy time of year and I'm trying to work when I can and mom and run errands and clean up some of the stuff that I let pile up around us for the last year and a half that I didn't have the physical, mental or emotional strength to deal with. It feels good to be organizing and decluttering a bit -- something I've never been very good at, at home.

Here are a few weird things that are happening to my body at this moment:

• My hair is curly -- super curly. With six months of growth it finally looks like a hairstyle one might actually choose. I think I'm blending in with the crowd once again and that's pretty nice. I should probably get it cleaned up, but so far, I'm just letting it grow. Sometimes post-chemo hair stays curly, sometimes it returns to how it was before. I guess we'll wait and see. 

• Thanks to said oil-attracting hair, I have zits at various places on my scalp and all along my hairline. 

• I have a fuzzy face. I've seen people with full-on beards practically at chemo, so I'm not complaining. I've got light, super blond sideburns essentially and down my jawline a bit. I'll have fun watching you all trying to see it now. Just wait for me to walk into the sun. You'll see it. 

• My nails split and break past the skin and it's really painful. At least I haven't totally lost any finger or toenails yet, like many people do post-chemo. I lost about 1/3 of my index nail in Florida (but didn't say anything) and it's growing back. I keep them as short as possible so they don't catch on anything, but the slightest thing breaks and splits them. I hope this phase passes soon!

 * My hair hurts. I know. Weird, right? It did this right before it came out in April and it's been this way since it started growing back in July. If you touch my hair it hurts -- kind of like when you've had a tight ponytail in all day and take it out and where the hair that was in the hair tie hurts. (I know SOME of you must know what that's like). It's like that, but worse. Actually wearing a winter hat is painful. I have to get it on and shift it to where it's not pushing the hair in the opposite direction than it wants to go (I feel like that's what's happening anyway). And because my hair is so curly and soft, people can't help but touch it or run their hands through it. If you have done this -- no worries. It doesn't hurt all the time. Just 80 percent of the time. And a quick run-through is no big deal. Now when James wants to play "Haircutter" that is a different story. I try to grin and bear it because I'm just so happy I have hair for her to pretend cut.  

• I'm still not gaining any weight back. I thought I would. I lost 20 pounds during all of this and assumed it would all come right back the second "real" chemo was over and menopause began. But so far, no. I'm regularly nauseous and usually don't have much of an appetite. When I do -- I really go for it and eat as much as I can stomach. At least food is sounding good to me again. Since I spent so much of the last year and a half wearing sweatpants it didn't matter that my regular clothes didn't fit me. But now I look forward to being able to get some clothes in my new size, even if it's temporary. I am feeling so much better and I want to look the part. I now finally understand why my Grandma June took a cushion to every sporting event she attended. She was bones sitting on a hard surface. I'm still not as skinny as she was, but I feel the same way! The last time we went to one of the football games to watch Claire cheer Daniel and I discussed getting cushions. I think I need to make it happen. 

• My chemo brain is at an all-time high. It's unreal. I hope at some point it gets better. I regularly forget words and have to describe them. I'm constantly using the wrong word when I type or use the wrong version of a word, (I just caught a where/wear and a there/their a minute ago), something I've always been annoyingly particular about. I can't even imagine what it's like to have Alzheimer's or dementia. I guess at least I can describe what I'm talking about until you come up with the word. Maybe they can't? Dozens of times a day I stand there trying to remember what I was about to do. I open the fridge and have to scan the shelves, hoping whatever I was going in there for jumps out at me. Post-It notes and a smartphone are saving me. I have to write most things down or they just won't happen. If you tell me something to add to the grocery list on my way out the door and I don't write it down -- good lucky, buddy. Some days it's frustrating. Some days -- most days -- it's a little funny. But I do worry how it will effect me professionally. I guess we'll see. 

That's about it! I was wrong about how many infusions I had left in the last post. I have one on Dec. 21 THEN I have two in January. I'll get my shot that day too. If I'll be on medication for the next several years or even the rest of my life, I think that means I'm still a patient. Cancer won't be "behind me" as I'll still be taking medicine for it. But holy smokes, it will be nice to go to those every three months appointments (I mean, other than the terror and anxiety). 

Tonight Claire's cheer team went to the hospital as part of a new program they started this year and James and I went along. I have a really cute picture of Claire and James and the site won't let me post it. You'll just have to trust me. Every night in December (from what I understand), a firetruck sounds its alarm at 8 p.m. and the kids in the hospital shine flashlights out of their windows to feel connected to people. Anyone standing down below shines their flashlight up to them. Then the kids go to bed. There were a lot of people there (and Santa! James wouldn't talk to him or give him a high-five, but then talked about him like he was her best friend) and it was really heart-warming (thankfully, as it was freezing outside). I wonder though, will it ever just be "the hospital" to me. Instead I see it and think, "That's where I go for my PET scans. That's where I went when I had to be admitted for X. That's where I park when I go in for my heart scans." Maybe after all this it will be time to move to a new area, to a hospital I've never been to. Or maybe it's good that I have received good care there and feel safe whenever I enter any of its doors. 

One last totally unrelated note! I know I mentioned how I'm working for my friend Stephanie and she makes these great planners that you should totally buy. I'm looking forward to using mine more consistently next year since I'll have more things to juggle and some new adventures I'll be embarking on (more on that later!). I'll spare you the whole explanation, but Stephanie gave me a discount code for my friends and family and you all certain are. You just have to go to her website, iamnaturallyempowered.com, where you can watch a video about the planner OR go right to 2018 planner and buy one. The code is Kirst18. (Full disclosure: I MAY get a cut. Just sayin'.) 

We also are collaborating with my friend Adriel's company Clary Collection. She co-owns it with her friend Jen and, with their slogan of "Naturally Empowering Women" how could we not collaborate? Any day now we'll be offering a box of one small Clary balm, one small Clary oil and the planner. This collection of goodies would retail for $68 and there will be a significant discount. So if you would like to support TWO women-owned small businesses this year, that is another option. The Clary stuff is all I use to moisturize my face and body anymore. And the balm goes on everything from my lips and elbows to James's chapped hands and scrapes.

Whether it's just the planner or the Clary bundle, they will arrive before Christmas if you are buying as a gift! 

Hopefully not much to report until the New Year. Have the happiest of holidays, everyone!

O.N.E. Y.E.A.R.

I haven't posted an update in a while, nearly two months, because....well, I haven't felt like it. :) And really there wasn't much to write home about. I'll bring you all up-to-date, but let's start out with the real headline. By the time most of you are reading this it will be Tuesday, Nov. 28. And I will be ONE YEAR CANCER-FREE. 

I thought the clock didn't start ticking until you were totally done with treatment. Turns out it starts when you have surgery -- at least for my situation. My mastectomy was one year ago. Seems crazy that it's already been a year, but pretty exciting. 

Why? For starters, with my cancer's set of characteristics, I have a 30 to 40 percent chance of reoccurrence in the first two years. Yeah. That number is high, right? That means I'm halfway there. One down, one to go. AND those statistics don't take into account the one year of Perjata infusions I'm currently doing every three weeks -- a new practice for which there is no long term data. So, we can only assume and hope that doing a year's worth of both the Herceptin and Perjata for people who are HER2 positive will decrease the chance of reoccurrence.

I have three more infusions of the Perjata -- Thursday, then two in January, THEN I AM DONE. After that I can remove my port if I want. Yahoo. This thing makes it sooooo much easier when I need it, but I can't wait to not need it. I'm not a big fan. Of course, I say all this knowing that by the end of January there could be some new study to consider that includes more treatment. 

After my final infusion, I'll start coming back every three months for blood tests, which can detect if the cancer has reappeared in my blood, bones or liver. Unfortunately, I would only know if it had returned in my brain or lungs, two of the most common sites for reoccurrence, if I start having symptoms. Can't they scan for that? Yes, but doing several scans a year can give me cancer. So, you just wait, take care of yourself and hope for the best. And have a panic attack every three months.

In the two months since I last posted, I've continued to heal from my reconstruction. My surgeon said everything is looking good and I'm healing nicely. At my last appointment a couple of weeks ago there was still a little fluid on the right side, which he said is not a surprise considering I use my right side more, being right-handed, and it's the side where I had radiation. It will just take a little longer to heal. I'm still restricted in how I pick things up and how heavy they can be, but he expects to give me the green light to do whatever I want, however I want, when I see him in January. I cannot wait to stretch. It sounds silly, but I feel like I've been hunched over for the last year and especially the last two months. I can't wait to really stretch my arms and back out. And go to the chiropractor. And maybe get a massage. And pick up my kid. And I guess have no more excuses for not exercising. 

I've been battling a chest cold of some kind basically since my last post. At one point it was so bad I went to the ER on a weekend, but they told me it's just a bad virus that's been going around that lingers and was hitting me particularly hard because my bod is beat down. (Well, they didn't exactly say it like that, but you get the idea). And linger it has. I'm still coughing almost two months later. Somewhere in the middle of there it was really bad for a few days again -- I don't know if it was the same thing or a new virus. Honestly, if James didn't have it and if my oncologist hadn't ordered a chest CT, I'd be concerned it was more than just a virus. Anyway, while it's not the worst anymore, I hope it leaves the building soon entirely. 

I also ended up in the ER a different day after side effects from my infusion had me concerned I had cdiff again. My doctor didn't want me to mess around, so in I went. Fortunately, while it was an unpleasant weekend, it was just a Perjata side effect. 

Other than that, not much is new with me medically. I've continued getting my monthly shots and taking my daily pill. My hair is really coming in now and it's really curly. Crazy curly! It will be interesting to see if it stays. Maybe it will and I can finally match my mother and daughter. 

I went on a trip to Florida a few weeks ago that was incredible. A reunion of college friends for a few days that was good for my mind and body and jumpstarted a bit of a change in perspective for me. Though I haven't talked about it a lot, I've had some pretty dark days in the last few months. Maybe that goes without saying, but in some ways the "how do I deal with life 'after' cancer" has been harder than going through chemo. Because now what does life look like? What does it mean? Not will the cancer come back but WHEN will it come back? Will I see James graduate kindergarten let alone high school? You know, light stuff like that. Someone can tell you not to think that way, but you can't help it. And you can't just decide not to think that way. 

Maybe it literally is, but it's a bit like PTSD in a way, I think. You can't really process it while you're going through it (which I still am I guess), then life begins to shift back to like it was before. But it will never be like it was before. Everyone around you moves on with their lives, as they should, and though your hair might be growing back and your skin is no longer gray, you are just begin to deal with the questions and emotions and fears and anger and you name it. At least that's my experience and the experiences I've read of some other people.

Though I sat here with a filled prescription I didn't take for weeks, I eventually started taking anti-depressants a couple of months ago. Even better -- anti-depressants that have a side effect of helping with hot flashes. I guess I didn't want to talk about it because I saw it as a sign of weakness (and sometimes question whether I'm sharing too much). And part of me thought "SHOULDN'T I be feeling all these things?" but after a particularly difficult morning, during which I thought I might literally explode, I decided to take them. 

I don't want to give pills all the credit, but I do think it's helping, and has helped put me in a place mentally and emotionally to do the other things I need to do to help me. Turns out watching TV, eating whatever you don't have to actually cook and being grouchy does not help you heal. Well, maybe it helps some people heal, or at least feel better for a day or two, but it is not a long-term solution for me. And I'm realizing, maybe it's OK that life won't be like it was before. Maybe, in most ways, it can be better than it was before. I'm still figuring that part out.

So, it's been 17 months since I was diagnosed and one year since they got that crap out of my body. I'm by no means done -- physically or mentally -- but it's insane to look back. So much has changed in the last 17 months and even the last 12. I've said it a lot but I can't imagine having survived all of this without so many of you who have rallied to help in one way or another. So many friends and relatives. Most of all Daniel, who did not sign up for this shit. Of course, neither did I. 

Fingers crossed I have very little to report in the coming months and soon there will be no need for this blog at all. I hope everyone had a nice Thanksgiving. I'm so glad I'm seeing how much I have to be thankful for. 

 

Heading Home

After two weeks at the St. Baidas Recovery Center (my sister and brother-in-law's house) I'm heading home! I'm so lucky to have such a comfortable place to recover and family who take such good care of me. I'm sure they will be glad to go back to having three people to take care of instead of four. :) 

I've got my second post-op appointment tomorrow (today by the time most of you are reading this). I THINK if things are on the up and up he'll tell me I can start driving. I obviously want to do what's best, but I'm getting a little antsy and I'm ready to be out in the world a bit. It will be some time before I can carry much of anything. I plan to follow doctor's orders precisely so I don't mess anything up and can heal and get back to life. 

I am having a little pain in unexpected places throughout my chest -- not necessarily unexpected because the whole area has been through surgery, but just some areas away from my incisions. Mostly on my right side, probably because I'm right handed and have probably been a LITTLE more active with it in recent days since I'm feeling a bit better than last week. 

Hopefully I'll continue to heal well and can get back to work relatively soon. I think it will be a good 2 months before he'll tell me I can lift my work stuff, then I imagine it will take me some time before I can build up my stamina to be cooking on my feet for 6-8 hours at a time. Baby steps. 

In the meantime, I'll keep working with my friend Steph, who I plan to continue working with as I baby step back into work. And I'm happy to share that the big project we've been working on launches TODAY. Her 2018 Naturally Empowered Planner is ready for purchase. There are some early bird perks and prices. I won't go into too much detail, as the page explains it beautifully, but the planner is so much more than just a calendar. Yes, it will help you keep track of all of your appointments and obligations, but it also helps you set and meet goals, stay organized, form healthy habits, has all kinds of wellness tips, inspiration and more. 

They will ship late November/early December so they make great Christmas gifts. AND you can help a small business/self-employed mama. :) I look forward to using mine to help me stay on track and not get overwhelmed by being more active next year. Navigating whatever it is my "new normal" will be and helping me stay in a positive headspace. 

Check them out HERE.

I wish I could be at the Think Pink fundraiser in Ionia this weekend, which benefitted me last year. There's a lot of information on Facebook if you are in or near there and want to help another woman dealing with breast cancer. They will have a giant TV with the MSU game on, so don't worry about missing that. There will be food, drinks, a silent auction and more. I look forward to contributing in some way next year!

A Week Out

Well, hello there! I'm now just more than a week out from surgery and doing pretty well. I had my first post-op appointment yesterday and the doctor said everything is looking good. While we were expecting no drains or maybe one drain on the right, I woke up with two, which was kind of a bummer. So, for the last week I've had to drain and measure the output twice a day. When we went to the appointment yesterday I was nervous he wasn't going to take them out, but he ultimately decided to. This time it was much more painful coming out (I hadn't taken any pain pills that day so perhaps that was the problem), but I'm much more comfortable with them out. The spots where they were are really itchy and a bit painful at the moment, but hopefully that will subside in the next few days. 

Speaking of pain pills, I'm barely taking them and am not in too rough of shape. Yesterday I was gone all day -- first to my Perjata infusion and then to my post op and my incision cites definitely were bothering me more than when I'm just laying around. 

Dr. Sherbert said I need to do nothing for one more week at least so everything can heal and settle. I'll see him again next Wednesday and we'll see where I'm at. Apparently the left side had a lot of scar tissue that he had to cut through -- thus why it took longer and why I ultimately had a drain on the side. So, that side's a little bumpy, but he said it would smooth out within the next four months

I'm still at my sister's for now, and she's taking great care of me, of course. I stopped at my house quickly between appointments yesterday and it was strange to be home! I'll head home for good in a few days and ease back into 'normal' life. 

That's about it. Watching lots of home improvement shows and reading a little. It's been nice to spend time with my sister's family. The boys like to watch cooking shows with me at night, which is fun. 

Thanks for everyone who sent encouraging texts, cards, gifts, etc. A couple of friends shared the ol' Go Fund Me account last week and those donations will certainly be put to good use. I never anticipated being out of work for this long so to say it's much appreciated is an understatement. 

I missed the hottest of the weather, so hopefully the milder warm temps will stick around long enough for me to enjoy! Have a good weekend, everyone. :) 

Recovering

Hey everybody. Daniel here.

Kirsten is thoroughly drugged up and recovering at Beaumont right now. I just dropped the girls off at their respective centers of care and learning and will head to the hospital soon after getting this update out. She'll be discharged today and move back to her sister's for a few weeks where she'll be cared for by her mom, just like she did after her mastectomy. 

Yesterday was a long day. There's something about hospital appointments that begin before dawn that always make me feel like I'm going before a firing squad. Kirsten was more anxious about this surgery than the first. I think because the pain and length of recovery that time were shocking. 

The operation went a bit longer than expected but her doctor told me afterward that he was happy with the outcome. They brought me in to see her after she had woken up enough to make conversation. She told me it was good to see my face and was able to tell me places on her body that she needed me to itch for her. This was a marked difference from last year's surgery, after which she couldn't make eye contact and had the kind of traumatized facial expression of someone who had just been mauled by a bear.

By the afternoon I was forcing her to eat a graham cracker (per nurse's order) and her mouth was so dry she complained that it was like eating a bag of sand. It was funny because she was croaking everything she said and I had a vision of an alternate-reality Kirsten who had never given up smoking a decade ago. I told her she sounded like Marge Simpson and she said "at least I don't sound like Patty and Selma." After thinking about it for a second I said, "Actually, no, you sound more like Patty and Selma." She made a disappointed face. 

By the evening we were watching game shows on the hospital TV and she was sky high on pain meds. But not so high that she couldn't blurt out answers to Jeopardy. One of the questions she got right was some geometry riddle about 180 degrees and triangles or something. I told her it was the hottest thing she'd ever said. I've always found her math nerd side sexy.

So that's about it. She's okay. There were no complications, thankfully. One last dreaded piece to this puzzle is behind us and now she can focus on healing from this procedure and trying to get more of her strength and normalcy back. 

But we're not popping champagne yet. For one thing, as everybody knows, there's no finish line to cross with cancer. It's beaten until it isn't again. And this treatment plan is not even over. She still has more infusions to go (and, when those are done, another procedure to remove her port) plus the nagging side effects of forced menopause – one of which is the inability to ever sleep through the night. Not to whine on her behalf but think about this: since beginning treatment over a year ago, Kirsten has felt some degree of sickness and/or pain every single day. She's never had a day where she felt good or even normal in all that time. She's just fluctuated between feeling bad and feeling terrible. That's her spectrum. Every single day with no days off. Can you imagine that? I get, like, existentially depressed if I've had the flu for more than three days.

So please keep supporting her. She needs it even when she can't bring herself to ask for it. 

It's Back!

Nabbed the domain, so kirstenkickscancer.com is back. By the time you're reading this, unless you're checking your e-mail after midnight tonight, I'll be at the hospital. Still waiting for the hospital to call to confirm, but I'm told I should arrive at 6:30. Surgery at 8:30. 

I dropped James at the sitter's with her overnight bag and her favorite penguin to spend the night with her. She wouldn't give me a hug and kiss before I left. Stinker. There will be a lot of moving parts tomorrow and I'm so grateful to have so many people in our lives to lean on. Her sitter will drop her at school. A friend will bring James home (and order her school pictures for me -- tomorrow is picture day, of course!), another sitter will be waiting to feed her dinner and put her in bed, then Claire will take over after she gets home from cheer practice. Whew. 

I'm feeling as ready as I can. I'm anxious and I guess just want it to be over with. I'm not looking forward to the pain, to feeling like I'm starting over physically, and to being away from home for so long. But hopefully this is the last of the toughest stuff. 

Thanks for all the kind words and support -- especially those of you who thought my surgery was today! ;)

xo

One Last Update Before Surgery

Hi, there! Busy going to appointments every day and preparing to be away from home and for my family to have ME away from home. It's been a busy week, but perhaps that's a good thing. Not too much time to think. They are changing up my medication and that has proven to be a little tough on me mentally/emotionally in addition to the menopause this week. I start a new drug today that will hopefully help with a few things, including hot flashes. I'm trying not to be too hard on myself and remember that these things are, in fact, having an impact on me in many ways -- my energy, patience, and even brain function. (I swear I can barely remember my own name some days). My body and mind are different than a "normal" 39-year-old right now, so it makes sense some days I feel like I'm hanging on by a thread. 

Daniel and I went to Chicago over the weekend and it was lovely. We saw his favorite band Thursday night then we had TWO FULL DAYS of no real schedule for the first time in a long time. While my friends were disappointed to not have James there, it was the first time we've returned to Chicago without her in the 3 1/2 years since she was born. I'm not going to lie, it was glorious. Ha. We had a lot of alone time walking around Chicago together and had a bbq with friends on Saturday, many of whom I haven't seen since our last trip to Chicago in March of 2016. I stayed up way too late and came home completely exhausted. It was worth it. I can't see us getting back there before maybe next spring so I tried to live it up. I've also not been able to get giardiniera pizza out of my head. (You read that right. So good).

Working has been good for me. I'm mostly on a computer, sitting down. Who would have thought I would enjoy that again. ;) It's good to feel like I'm accomplishing something, using my skills outside the house AND I get free baby snuggles and a little girlfriend time while I'm at it. Although, I will say, we are on task 99% of the time. Steph is a self-employed mother of a 4-month-old -- we both know that we only have so much time to fit it all in! I remember when I nannied for my sister's family, she would say I took forever to grocery shop. Not a complaint so much as a question of what the heck took so long. Now I get it. Time is of the essence more than ever when you're a mom. Get in and get out. What the heck was taking me so long? There's more work to be done! Anyway, unfortunate timing that my surgery is next week, RIGHT when our main project is essentially set to launch, but I got as much done as I could with her this week. I can't wait to share it with you all. Hopefully it will only be a couple of weeks before I'm at least able to do some computer work from home for her. Aside from my hot flash reminders every hour or so, when I'm working I kind of escape all the cancer crap and just feel like a human and that's nice. 

Regarding the website here, I'm still trying to get my domain back. It's between the time when it expired but I could have renewed it and when it's released back to the world so I can snatch it up again. I tweaked a few things and this post will be a test as to whether it will go out via my subscription service tonight at midnight. If not, you'll know you just have to go straight to kirstenkickscancer.squarespace.com directly from time to time to check for updates until I figure something else out. I'll have Daniel post here after the surgery Tuesday for anyone who's interested. Though I'm quite confident (let's hope!) that it will say, "She's awake, it went fine," and perhaps include some other crack about a joke he told me while I was still half in the anesthesia bag. I should be done around noon. 

I know it's not supposed to be "as bad" as the last one -- which makes sense -- but I'm obviously not exactly looking forward to it. It's still surgery and it's still scary. Fingers crossed all goes well. I've got my painkillers already and I'm going to start packing up. Though I try not to complain about it too much, I'm in constant pain. I've gotten used to it mostly, as it's rarely excruciating, but I think and hope a lot of it will improve after these expanders are out of my chest and the much softer implants are in place. You would be surprised how painful it is trying to put on a tupperware lid, close a window or -- lord help me -- wind a hose back up (full disclosure: mine's been uncoiled laying across my backyard for a couple of weeks now...). 

My sister will be away for a few days just after my surgery so my mom will be flying solo watching the boys and me at her house in Milford. Maybe it's time those boys took care of me to make up for all those years I was changing their diapers though, am I right? And of course I'll hopefully get a visit from Daniel and the girls at some point over that first weekend too.

Thanks to everyone who continues to reach out, send cards and notes and gifts, and who has offered to help Daniel or come by with food, etc. after my surgery. I think we'll largely be in the same boat as last surgery in terms of my limited abilities and recovery so it's much appreciated!

Last night I heard a statistic my oncologist told a fellow patient and now friend of mine regarding our estimated life expectancy post this type of breast cancer (while explaining to her why she should now take that darn chemo pill I narrowly escaped). I won't share the number here because it's messing with my mind, but know it's not nearly big enough and involves me never seeing James be anywhere close to my current age. It's the first thing I thought of this morning and I can't shake it. I guess it's a big wake up call for me to right the ship. Focus on what I want my life to be, what choices I need to make in my daily life and how to stay motivated to be the healthiest version of myself I can be. I also need to remember that it's an average, not the rule. Of course, I've never been one for rules much anyway. 

One Out of Two -- I'll Take It!

First order of business -- NO CHEMO PILL. She said she had them test every single slide from my surgery (apparently more than than 200, but she made them do it anyway) and the majority of my tumor WAS HER2 positive. This means the treatment we've been doing, and the extended Herceptin and Perjata infusions that specially target that, have been exactly what we needed so there's no need to take a chemo pill (which would have targeted cells that were not HER2 positive). 

That being said...I am going to continue with the Perjata infusions. Since the recommendation from the most recent study on it is 17 each of Herceptin and Perjata, that means I have 7 more. Originally they just recommended the Herceptin, which is why I've been taking it this whole time and had my last one yesterday. Since the study suggesting the Perjata didn't come out until a couple of months ago, I've only had 10 of those total. So that means seven more, every three weeks. My next one will be delayed one week because it should fall the day after my surgery. This will make my last fall on or about Feb. 2. Hopefully the side effects from the infusions will continue to be mild as they have been for the last few weeks. This also means, no port removal and the cancer-free clock doesn't begin just yet.

Because my body has taken quite a beating for the last 15 months I'm really weak and get winded and tired really easily. I try not to complain about it too much and I think it's probably hard to believe that I'm really THAT tired. Daniel and I went on a relatively brisk walk the other day and I made it about a block and a half before I had to kind of catch my breath and walk a little slower. On vacation we were walking around the bay with our friends and we fell pretty far behind -- I just couldn't keep up. I know I need to start doing more of this stuff to build up my stamina. My doctor also wants me to go to a physical therapist a few times so I can target where I'm weakest and come up with some ways to rebuild those areas specifically. Of course, taking into account the areas in which I'm in pain and my limited range of motion from surgery and radiation, etc.

I've been reading in a cancer group I'm in online about how severe the bone pain is for some who are on the Arimidex and fortunately that has not been a major problem for me. I get a little achy here and there, but it hasn't been to bad since that first week on the pills. We're going to try some new things to address the hot flashes and the lack of sleep, so fingers crossed that will work. 

I've started working part-time for my good friend Stephanie and I'm loving it. Both because I love her and what she is doing, but because it has made me feel so good in the last week mentally to accomplish specific tasks for someone else. Her website HERE explains beautifully everything she does. My first task is to help her complete and distribute her 2018 day planner, which will be published in time for Christmas. I'll be sure to share the information here when it's available so you can order one if you're interested. Then we'll move on to other projects she's got coming down the line. It's just a few hours a week and I can work from home if I'm having a rough day. We've always talked about working together and now we get to. 

That's about it! Looking forward to relaxing a bit over the course of the next week then will be gathering everything I need to do to prepare for surgery and being away from home for some time. The surgery will be at 8:30 a.m. so we'll need to get to the hospital at 6:30. It should last about three hours, give or take -- much shorter than last time. I'll spend the night again and be released on the 20th. It was so wonderful Wednesday when my plastic surgeon was saying to makes sure I do the laundry, etc. before surgery to say, "My husband does laundry!" It's so wonderful to be married to someone who is so involved in the house and the children that anytime I have to be in the hospital, etc., he can take over without skipping a beat. 

Hopefully I'll have figured out my domain thing by then so he can easily post an update after my surgery for anyone who's interested. Have a great holiday weekend everyone!

P.S. I'm zipping this update off quickly -- sorry for any typos! :)