Here We Go

Well, it's here. Chemo tomorrow. I've really felt pretty great for the last week or two so it's a bit of a bummer to realize I will be not continuing to improve every day, feeling better, getting stronger. I don't want to assume it's going to be terrible, by any means. I'm hopeful that it will go by quickly, I'll be able to stay ahead of the nausea, not be knocked out for too many days each time and can maintain a relatively normal life for the next two months. Our new normal anyway. I've been feeling a little gross all day, like maaaaaybe a cold is attempting to surface and I'm doing my best to keep it at bay. Fingers crossed. I've tried to keep it under wraps, but I'd be lying if I said I haven't been pretty anxious for the last few days about it all. It's a blessing and a curse to have an idea of what's to come.

Getting away last week with Daniel was amazing. We only spent a couple of days in Traverse City but we managed to decompress, relax and enjoy. The first time around everything was so busy and overwhelming and there was no time to even think about what I was getting myself into. There are pros and cons to knowing what's coming. In addition to our little getaway, I went through with having some fun with my hair this time around. Claire and the amazing Irene at Flip in Ferndale discussed the plan while I was in the restroom and I watched it unfold, unaware of what the plan was. I've never in my life bleached my hair or had light hair. I wish I had taken a photo of what I looked like with the blonde before they dyed it! All I told Claire was to be creative and kind and she totally delivered. You can certainly pick me out in a crowd now! I think the nurses tomorrow will love it. 

I'm hopeful that I'll feel well for the Shades of Pink walk next week. A couple of strangers joined my team this week even, which has raised a little more than $800. I think the team actually earns something if we hit $1,000 by tomorrow... So if you're thinking of walking with us, sign up now! Rain is in the forecast for that day at the moment but there's more than a week for that to turn around -- fingers crossed!

Other than that, not much is going on. I had another appointment with my plastic surgeon today to fill the left side -- I'll probably only need to do that one more time before they're looking pretty darn symmetrical. I also asked him a lot about finishing the reconstruction. We're looking at October for that.

One question I have, especially as a person who likes to handle things naturally whenever possible, was the effects of having implants in my body. As foreign objects, what's to stop my body from basically attacking them (which I've read about). He said one newer development in the last few years is to use skin (cow or human) during the initial surgery I had in November. It creates a barrier and basically tricks the body into thinking it doesn't need to create scar tissue because there's already some there (I think that was the gist of it). I was like, "Wait, what? There might be COW skin in me right now?" He looked in my chart and it turns out I got the human skin. Also weird, but I prefer that to cow skin. Apparently until recently they had to use cow skin because they couldn't find a way to sanitize human skin and remove its former occupants' DNA, etc., but one company figured it out. So, that's what I've got. 

Second question was the logistics of the surgery itself. He said in the past it was always preferred to go back in through the original incision but, because radiated skin has a tendency to be tight and shrink up it can cause the incision to open after the second surgery, even 6 or 8 months after radiation is over. So, lately he's been creating a new incision on the underside of each breast (including the non-radiated one for symmetry's sake) and it's been healing and working really well. He expects it to be a similar scenario as the first surgery -- needing a couple of weeks to heal at least. I may or may not need drains again, depending on how the surgery goes and how things look when he gets in there. He said radiation can cause inflammation, which can in turn create a scenario with more fluid. So, we just have to see. In the meantime he thinks he may actually be able to expand the right side a little more. Better to have a little extra room and extra skin when putting in the implants so he can get them in there and then create the exact shape he needs to. Makes sense to me. 

I actually talked to a woman today who had reconstruction recently, was not happy with it and heard such great things about Dr. Sherbert that she has now consulted with him about fixing things up. I continue to get affirmation that I really have incredible people on my team. 

Several people have asked if we're going to start up Meal Train again and I think probably not. It was so amazing (and delicious!) last time around, but since that time we have a couple of specific diets going on and my tastebuds seem to be pretty fickle during chemo as well. I just don't want anything to go to waste. If anyone would like to help, we certainly won't turn it down though! Just reach out to Daniel or I and maybe we can say what types of things were needing or are sounding good to us if you're in the mood to cook. The grocery store and restaurant gift cards always come in very handy too and enable us to get exactly what we need and want in the moment.

Thank you all for your the encouragement and support. I feel like it will be welcome and needed long after the toughest stuff is over. As big as my tribe of supporters is, going through this can feel pretty lonely sometimes and your kind words, cards and generosity are not lost on me for one second. 

Winding Down and Gearing Up

I've had a pretty great couple of weeks since I last posted. In the last week that stubborn area has healed up and I've been enjoying time with family and friends. I'm finally feeling the best I have felt since last July and it's a little disheartening to know I'll be feeling like crap in about 10 days, but I'm trying not to let that get me down too much. 

I've been having a lot of fun with the family and hanging out with friends and Daniel and I are going to have a little getaway up north later this week to relax before the next wave begins. Unfortunately it's set to be gorgeous here and not so gorgeous up there. Oh, well. 

I had my heart check last Friday and all was clear there, so that's good. My plastic surgeon started evening things out. I'll continue to go to him for 2-3 more visits and that should be sufficient. I imagine after the last we'll start to discuss plans for my (hopefully) final surgery. 

I have an appointment next Wednesday to get my hair done. I have no idea what Claire is cooking up. Last I checked she had figured out what style she wanted but hadn't settled on a color. I'll be sure and share her creation once it's done, which will probably be my next update. 

Hope everyone is enjoying this amazing spring weather today!

A Month Off!

I went in for my regular Herceptin infusion yesterday and, first of all, got some good news! My white blood cell count has been hovering around 2.7 (lower than normal still) for months and in the last two weeks went up to 3.7! For about three weeks, I've been taking a new supplement specifically for this and it must be working. Apparently, now that radiation is over, which can hurt counts a little, the supplement (Astralagus) should really help. My neutrophil count also went from 1.7 to 2.8 so that's good news too. Neutrophils are a type of white blood cell that fights infection, so those are the two they especially keep an eye on. 

We made the plan for my next stretch of chemo. She was going to have me come back in three weeks for a skin check and if it was healed enough, I would start chemo that day. I asked if I could start in four weeks instead because A) It actually will work better with a few things we have scheduled and B) I'd rather have an extra week for my skin to heal. The description of what can happen -- basically the chemo causes the radiation "burn" to return from the inside out -- doesn't sound fun. 

SO, I'll start on April 20 and have it May 4, 18 and June 1. It will seem short, in some ways, since it's over the course of 6 weeks versus 18 like last time. The two drugs I'll be getting are Adriamycin and Cytoxan. Adriamycin is referred to as "the red devil" for reasons you can imagine. My nurse said, "Oh, with what you were on before... you'll be fine." I guess we'll see. Googling has turned up some pretty wicked accounts of what this particular combo can do. Adriamycin is especially hard on your heart, so I'll have a previously-scheduled echo on April 14 and they'll continue to monitor it. 

I'm going to go to acupuncture directly before each chemotherapy appointment this time so that should hopefully help with some of the side effects too. I continue to be grateful that it's half off for cancer patients. 

Once I'm done with the AC infusions, I'll resume my Herceptin infusions. I have four left. And the doc informed me yesterday that, according to a new study, a year of Perjata (one of my original four chemo drugs, which targets the HER2 aspect of my cancer) is showing positive results for reducing reoccurrence. While Perjata was pretty brutal the first time around, apparently when it's on its own most people have little to no symptoms, much like the Herceptin. She's getting the full low-down at a national conference in July, but says if the initial findings were true it's the best course of action. Of course, I hate that the finish line keeps getting pushed further and further away. I'm ready to get this port out of my chest and really feel like I'm moving forward. Now that looks like it will be in 2018 at best. BUT I want to do whatever I have to do to not have cancer again so if that means deal with it now, of course I will do that. 

That's the latest! My armpit turned around quickly over the weekend, just like the doctor said it would. My biggest issue right now is that, the day after I finished radiation, I removed a sticker they had on my chest to center to the machine. What a dummy. Of course it took with it several layers of my tissue-paper skin and I'm having one heck of a time getting it to heal. I've literally spent whole days this week sitting still, allowing it to have fresh air and heal only to have it then suddenly stick to my shirt and come off again. I can't think of anything else to do to keep it dry and get it to heal, so I'll just keep it up I guess. 

James had a great birthday and has decided she really likes them. She's pretty pumped to be three and we're pretty pumped to have a 3-year-old. Of course, she serenaded the family at her birthday party with some showtunes. You know it was a good party when, after everyone left, she said she was ready to take a nap!

I shouldn't have much to report for the next few weeks. I'll have a skin check at the radiologist next week and hopefully will get this wound healed. Headed to the plastic surgeon next week as well, to start to even things out. Going to try to take advantage of feeling pretty good and having a few weeks off from any type of treatment. I'm thinking of letting the girls decide what I should do with my hair before it falls out again. If James has any say, pink and/or purple may be in the mix, but hopefully Claire will do most of the designing. :) The possibilities are endless!

Ringing the Bell

Well, today (Thursday) is finally my last radiation. As I've seen people do online on their last day of chemo, I learned there's a bell I'll get to ring when it's over. (There doesn't seem to be one where I do chemo). It's a little bittersweet. If I didn't have to do chemo again it would feel like it is more of an accomplishment and a more exciting thing to ring the bell as the end of radiation would have been the end of treatment. And I wish it was. BUT, I'll ring it and enjoy it because NO MORE RADIATION. 

About a week and a half ago, things started to get awfully uncomfortable. Turns out that was nothing. There's a bright red square covering the right side of my chest where I've been receiving radiation and by last week my skin was thin, like tissue paper. I went to pick what I thought was a drop of a face mask Claire and I had done and when I pushed at it, my skin just pushed away. I was momentarily horrified. In the week and a half since, I've amassed several knicks and scabs across my chest -- it seems every time James touches me, my skin breaks. Kind of like when you have a blister and it pops. Those don't really hurt though -- they itch more than anything. And the radiation seems to keep them from healing. 

By late last week the skin under my arm had gotten brown and leathery and started to peel. The skin underneath is soft and pink. The whole area is tight and dry. I can only compare it to the feeling when you have a scab on your knee or elbow and have to bend and stretch it or when your lips are painfully chapped and your lips crack when you smile. But they said my skin was doing great for this stage, better than many. A couple of weeks ago they gave me some ointment and also said I could use this Boiron Calendula Cream. A friend who is a year out from radiation dropped some off to me. Once they said I could use that, I also started putting this natural, also calendula-based bath oil on the area gifted to me by a friend who co-owns the company, Clary Collection, every time I shower. I had been using it, especially on my scars, since I healed from surgery, until I started radiation and they asked me not to put anything on it. While it specifically wasn't approved by the doctor, once they said I could use the cream I took it upon myself to decide it was okay, being all natural (and handmade in small batches by a small, women-owned business -- plug, plug!).  I think this was a big part of my skin staying in good shape for so long. 

Just to insert a bit of humor into this post, here is a picture of James on New Year's Day, who asked to see my "special lotion" -- Clary's balm. Daniel and I were in the middle of eating dinner so I stupidly handed it to her and off she went. I found her like this a few minutes later. I think her skin is still nice and soft from it. She asks for it almost daily. 

ANYWAY, last Friday the nurse gave me some packets of powder to make a soaking solution for my skin once it breaks. She said it as if it was inevitable, but part of me still thought, much like when I reached two weeks after I started chemo and hadn't yet lost my hair, that I would be this magical freak of nature whose skin remained intact. Just as my hair started coming out in clumps on day 15, the very next day a quarter-sized area of red, wet skin appeared in my armpit. We had been at my sister's house for a few days because our power was out (totally saved our lives) and, as we unpacked the car Saturday evening back at home, my armpit area was definitely hurting more than usual. Kind of burning. Stupidly, I was surprised to find the broken patch of skin when I changed my clothes. 

So, I started the soaks. You mix the packets with water, soak some gauze, hold it to the area for 15 minutes, then let it dry thoroughly. I've been wearing a lot of tank tops to make this easier and sitting by the fire so I stay warm. Each day I wake up and the open area is a little bigger. They examined it Tuesday and said they didn't think the area would get too much bigger but that it would get worse for the next week before it starts to heal (seems a little contradictory, but what do I know).

Tuesday night I took Claire and a friend to a really fun circus play in Detroit (super fun, good for all ages and headed to you next, Chicago friends) and, as I was walking during intermission, I could feel the moisture and thought, "That doesn't seem good." When I got home the area had doubled in size. Today, Thursday morning, it's several inches long and a couple of inches wide -- it looks like what you imagine when you picture a burn victim. (And, as more than one person has pointed out, I know this isn't a "burn" even though I keep calling it that -- it's just the best way to describe it). It's really uncomfortable and I seriously can't imagine what it's like to have a real burn over a large portion of your body. 

It makes me feel like a bit of a wimp, but I'm taking some meds to ease the pain a bit and I'm just trying to focus on next week -- when I hopefully will turn the corner and begin to heal. Part of me wants to lay in bed and sleep until that day arrives, but I can't do that. Or at least I won't. While I'm hopeful chemo won't be as brutal this time around, I know I've got lots of days in bed on the horizon so I'm going to be as mobile as I can while still being smart and careful. 

I realize all of this detail is perhaps unnecessary, but I've got my ladies in mind who are embarking on radiation in the coming weeks. I won't horrify you all with a picture of what's happening, but will happily share it with them, should they want to see it. I saw pictures too and, though it doesn't really prepare you for what's to come (and who says any two people will have the same experience anyway), there's less of an element of surprise when it happens. Someone yesterday said they heard radiation is worse than chemo. I don't know that I would say that, but this couple of weeks is definitely proving to be a little tougher than I thought it would be. 

I'm trying my best to keep my arm elevated and away from my body, as friction has a lot to do with why this area gets hit the hardest, but you can imagine how easy that is while trying to do ANYTHING, especially when you're right handed. If that means I need to do less and ask for help more for a week until I turn the corner, fine. Daniel is on board and doing a great job of taking care of his ladies.

I really am sick of going to the hospital every day, as lovely as the gang who has been taking care of me is. Since Friday they've only been targeting my scar area, which is called getting a boost to that area, so the appointment is fast. The radiation itself is about 30 seconds, which is great considering it feels like my armpit is on fire when I raise my arms above my head. It's also been nice to know the worst has been done to the broader area. Either my breathing has evened out or I've gotten used to it and I haven't had any issues swallowing, etc., which I guess sometimes happens during radiation. I go back in two weeks so they can see how I'm healing and I guess that's it. 

Next week I'll have my regular Herceptin infusion on Thursday and I imagine I'll then find out when I start chemo. I'm guessing April 13, as they said four weeks, but I'm not positive. I'll also head back to the plastic surgeon in two weeks to start refilling my left side so I can even things out a bit. I'm thankful it is winter, a time of bulky sweatshirts and coats to hide my uneven lumpiness. I imagine I should feel and look a little more "normal" in plenty of time for T-shirt season. 

In the meantime, James turns THREE on Saturday. I feel like she just turned one. It's insane. We have invited aunts, uncles and grandparents over Saturday for a little lunch gathering. I'll have some snacks and will order some pizza to make it easy on myself. James has requested pink and purple cupcakes so I'm going to try to make her dreams come true, using a recipe from one of my favorite baking sites, Sally's Baking Addiction. Claire's cousin will spend the night Friday so I think I should be able to enlist them to help make it happen. 

Thank you for the continued calls, cards, notes and gifts. It's hard to believe it's almost been a year since I first felt something was "off." Thank you to everyone for hanging in there with us. 

21 Down, 9 to Go

Well, I'm rounding the corner to being done with radiation. At least that's what I'm telling myself. No radiation today, Friday, as the machine is down for maintenance, so that leaves March 16 as my end date. I'm definitely tired of going there every day, sometimes for hours if I have other appointments, but most days it's quick. I'm starting to be quite dark red and brown and, as of this week, it's pretty itchy and painful. Today especially it's been bothering me since the minute I woke up, but if I keep busy I don't notice it as much. I have a feeling it's just the tip of the iceberg so I'm just going to keep my head down and go forward, trying not to complain too much along the way. 

I've been having a little trouble breathing -- nothing major, but I've been feeling like I'm not getting a full breath, which then causes me to take a really deep breath, which is a little painful. I mentioned this to the doc on Monday and, long story short, spent the next seven hours in the ER. I had an Echo, EKG, CT Scan and bloodwork. Nothing major is going on -- and there was nothing visible whatsoever going on with my lungs -- so we're not worried. He said if it gets too bothersome or worse maybe we'll try steroids for a week to calm down whatever internal inflammation might be going on. For now I'm going to hold out and see how it goes. 

Unfortunately, Daniel was on a plane back from his cousin's wedding when I was sent to the ER, so I texted him when he landed that he would have to use the car service Lyft to get home, then go pick up James at the sitter's. BUT the airline had lost one of his bags and by the time he got out of there it was almost her bedtime. So James had a surprise sleepover and Daniel was able to come hang with me when he got home and got his car. It was my first trip to the ER that resulted in me coming HOME and the first when I didn't feel so bad. In fact, I was starving -- I eventually got to enjoy such hospital delicacies as pretzels, a PB&J, some apple bread and an apple. Bunch better than any other time I've been at the ER. Bright side, I guess. 

Good to know nothing major is going on and the breathing thing isn't bothering me too much. From the bloodwork I learned that my white blood cells are still below normal -- and just as low as they were 6 weeks ago when I last had bloodwork. So, my naturopath advised me on a new supplement to take to help bump them up. I'd like to see them in the normal range before chemo starts, but that will be here in about six short weeks. The good thing there, too, as that they didn't get crazy low until my sixth chemo and this time I'm only doing four so maybe they won't have time to get super low. 

Not much else to report. I had my regular Herceptin infusion Thursday. I think when I go back for the next one in three weeks, we'll make our chemo plan of action. Looking at the calendar, I think I may not start until the 20th, so that should have me feeling pretty good by that Shades of Pink walk at the zoo on the 29th! That just might work out well. On the website I see that my oncology surgeon is in third place overall for what she has raised -- $635 -- so my team has almost caught up to her with $585! :) 

Sometimes people come into your life through the crappiest of circumstances and this situation is no different. I have a handful of women who have come into my life or become closer to me only because we all have cancer or have recently had it. It really sucks that those are the circumstances, but I'm grateful for them. One of those women and I have been communicating via text for months but had never actually met until Monday, when we met for coffee in Ferndale. We had a great talk, which led to us going to see Hedwig and the Angry Inch last night at the Fisher Theatre. I told her I'm am down to go to a play when ever she wants! Especially at that gorgeous theater. I don't think I'd been there since Claire and I saw Annie a couple of years ago. Hedwig was an amazing show and a lot of fun. As if one lady wearing a mask wasn't enough to get people gawking, there were two of us! When the guy a couple of rows up starting sneezing, turning his head into the aisle (toward us), I was glad we made the choice to wear them despite the fact that our section of the theater wasn't very full. 

I'm taking Claire and a friend back to the Fisher in a couple of weeks for Circus 1903 and we've got some other fun outings coming down the pike. James turns the big 3 on the 18th, so that's the main topic of convo with her around the house these days. It's great to have some things to focus on and look forward to. Here's hoping those spring temps return and stay soon so we can get back outside too. Have a great weekend, everyone! 

Almost Half-Way There!

I'm writing this Friday afternoon after my 12th radiation. Twelve down, 18 to go. I'm seriously sick of going to the hospital every day, sometimes twice a day (though I try to schedule my appointments together, which has mostly worked out). In the last 2-3 days my skin has definitely started to get really pink, bordering on red in some spots, and is starting to get painful, especially on the side and under the armpit area. My doctor, who checks the progress every Tuesday, doesn't want me to put anything on it for now so I'm following orders. Below is the machine  I use each time, though the staff is inconsistent from day to day since I'm there at shift-change. They call it a "couch" which is the silliest name for it ever. I think the worst part while I'm actually there is my tailbone digging into the table -- not very couch-like. Everyone on staff is fantastic, though, and there are at least a couple of people who are there more days than not. 

In addition to the redness and pain, I'm exhausted. He told me "fatigue" would be a side effect of the radiation, particularly at the dose I'm getting, but I've been kind of shockingly tired. James has been an early riser lately too, so that coupled with not sleeping the greatest has been a challenge. Fortunately, most days, I can take a nap. Sometimes it's not the kind of tired that can be helped with a nap though. Just dragging my body around is tiring. Walking up stairs. My whole body feels bruised too, especially the back of my right arm/shoulder. It's felt that way since surgery, but was starting to feel better until radiation started up. Still a million times better than chemo though. Just different. 

My appetite comes and goes depending on the day. I'm happy to have a taste for fruits and vegetables again and my body is tolerating it well. I've put on almost 10 of the 20+ pounds I lost, so that's good. I truly like eating salads, etc. though and I'd rather eat healthy and feel well than eat garbage just to put some pounds back on. I tend to eat a little more well-rounded diet when I eat out so maybe that's the key! A friend gifted us the vegan meal service Purple Carrot and I've kept it going for the last few weeks, as I think it's helping me eat more well-rounded meals with more protein, etc. than when I just throw a salad together for myself. The meals have been really good and I'm getting some recipes I can use for work down the road, so it's a win-win. Hmmm.... is it a business expense??? :) 

Other than that, not much is new. We're trying a couple of new things to hopefully help with my sleep. My iron should be creeping up following the iron infusions and, therefore, my white blood count should hopefully start climbing too. Of course, that can take a hit with radiation a bit. I'm still getting my Herceptin infusions every three weeks. Acupuncture every week or two.

Looking forward to getting James outside in the sun this weekend, which will be good for me too. It's hard to make myself do much these days due to physical, mental and emotional exhaustion. I've seriously lacked motivation, even with minor tasks around the house, unfortunately. It's hard to go through this and have to parent, but I also think the girls are a big part of the reason I'm up and at 'em, running errands, picking up and dropping off, packing lunches, making meals. I'm afraid if it were just Daniel and I, he might be fending for himself and I'd be in bed. I'm not sure how people who have treatments that last much longer than mine hang in there because, well, I'm tired of cancer. But good things happen every day. I try to remind myself that I'm winning the war, as silly as it sounds, and things could be much worse. This part won't last forever and the finish line is in sight. 

The cards and notes and blankets (yes, multiple!) and gift cards continue to keep our spirits up and come in very handy, so thank you very much. Have a great weekend, everyone!

1 Down, 29 to Go

My first dose of radiation is done. I glow in the dark! Cheap joke, I know... It was pretty simple. I checked in, changed into a gown and they came to get me a couple of minutes later. Today's took a little longer than it normally will -- by a few minutes I guess. They checked and rechecked their measurements, taped some kind of measuring strips to my chest and put a wet towel over the area that they are radiating. I can't remember exactly why they did that -- something about tricking the machine into fully exposing the raised area of my surgery scar. The towel won't be there every time though. 

Anyway, I laid there while the machine swirled around me and after a few terrible songs on the radio it was over. Back again tomorrow, after my second iron infusion. I already feel like the cancer center is my home away from home. Now that I will be there every day I think I will straight up get sick of being there. But, six weeks. March 15 is my last one. It will be here before I know it, right? 

I shouldn't feel much by way of side effects for the next couple of weeks, from what I understand. I really hate that exposing myself to radiation is the best course of action here, but I'm also grateful for the technology. Trying to keep my mind on the positive aspects of this scenario. That's what I'm up to for now -- not much else to report. Have a great weekend!

And Away We Go

Finally got the call today (Tuesday). I'll go in tomorrow for radiation verification, then begin on radiation Thursday afternoon. I'll go in every afternoon, Monday through Friday, for the next six weeks. If my calculations are correct, that means my last one will be March 15 or 16. Every day, when I arrive at the office, I scan my ID card (which they gave to me the day of the simulation), change into a hospital gown and wait in the women's dressing/waiting room. They'll get me, I get in position and lay on the table for about 12 minutes. Then I get dressed and go. They said I should be in and out within 30 minutes each day. 

SO, that should put me starting chemo again around April 13. Since I'm doing that every 2 weeks for 4 courses, it looks like my last one will be June 8. I can't help it, I'm all about those end dates (yeah, yeah, yeah, while recognizing they can change at any moment). After that I'll be looking at my reconstruction surgery in September. So far, that's all I know. :)

I'll be continuing my acupuncture and my Herceptin infusions all the while. My oncologist called last week to say she wanted me to come in for iron infusions. Apparently my iron is crazy low and she thinks that is why my white blood cell count isn't bouncing back like she would like (It's still below the normal range three months post-chemo). So, I had an infusion last Friday and I'll do a second one this Friday. The two infusions give me the equivalent of three months worth of oral iron, so it should bounce right up. Then I'm going to start taking something called Floradix Iron & Herbs, which I started taking when I was pregnant and have taken on and off since. Especially eating a diet that is not ideal for several months due to my intestinal issues, it can't hurt. 

Today I saw my oncology surgeon and she said I look good and she'll see me in a year. A YEAR. One doctor down, a couple more to go. As I was leaving she said she hoped she would see me at their Shades of Pink fundraiser walk at the zoo in April, so I looked into it. It's a local organization that was founded about 10 years ago to help women going through treatment who are having financial hardship. I have been the recipient of so much generosity since I was diagnosed. Although I'm still not back to work and we certainly have needs of our own, I'm ready to start giving back and this is one small way I can do that. The walk falls just a couple of days after what I think will be my second chemo, but fingers crossed I can do it. Dr. B said you walk if you can, or you can shop, eat or just hang out. I should at LEAST be able to do that. :) 

Here's my page on shadesofpinkfoundation.org. If you would like to donate, you can do so there by clicking Give Now. If you're local or you feel like taking a road trip and walking with me that day, you can click Join My Team and register ($35 for adults, less for kids). It starts at 8 and the whole thing is wrapped up by 11:30 it looks like. Of course you're welcome to hang out in the zoo after that too. 

No pressure to donate! I figure even if I just raise a little bit it can make a big difference to someone in need.  As I sit here by the fire, watching the snow fall outside, I have high hopes for good weather that day, when I will be so much closer to the finish line. 

Waiting for the Call

Not much is new -- at this point I'm still just waiting to come in for my radiation simulation verification. I imagine by the end of the week I should get a call.

I had my post op appointment on Wednesday. He said everything was looking fine. We'll wait two weeks after radiation is finished then start refilling the left side again. Other than, shouldn't be much more for my plastic surgeon to do from here on out. I have a follow-up appointment with my oncology surgeon next week -- I don't expect much to happen there either. 

James went to my mom's for the weekend and I would like you to guess how many things on my To Do list I accomplished in her absence: precisely zero. And it was glorious. After I dropped her off with my mom Friday at my sister's, I started with a nap, then met a friend at the DIA (the art museum) and dinner at nearby Chartreuse. Saturday was a lazy day with Daniel that involved sleeping in, a movie, a then walk through downtown Royal Oak with a stop for my new favorite hot cider, then back home to watch Fences. (Daniel is a member of the Screen Actors Guild and gets screeners so he can vote before the awards next Sunday. It's a really delightful perk.) Sunday, more sleeping in followed by an amazing brunch at Greenspace Cafe in Ferndale with friends, another rainy walk and dinner in Royal Oak with Daniel and the kids and back home for a movie once we got a very tired James (too much partying at Gigi's) in bed early. We're trying to show Claire some classic 90s hits now that she's old enough. Between our house and her mom's house she's seen everything released in the last couple of years that she might like, so she doesn't have much of a  choice than to amuse us with our nostalgia though they aren't her favorite. 

No school for Claire today for "records day" so I'm getting a few things done around the house and we're going to see yet another movie -- what else to do in this weather? I was hoping to take her to an exhibit at the Henry Ford Museum we've had our eye on too, but they're closed today for a special event. Maybe next weekend. 

It's really nice to have nothing much to report. I suspect I'll be starting radiation by this time next week! One more step toward the end. 

Good News!

I woke up to an e-mail this morning notifying me that my online chart had been updated. I didn't breathe for a minute while I scanned through my PET scan report, but all that mattered was this at the end: Essentially negative PET study without evidence of FDG (I have no idea what that means) avid malignancy or metastasis. Compared to the prior PET/CT scan of June 24, 2016, this indicates a favorable response to therapy..."

Yay! While this was certainly the outcome I was expecting and hoping for post-chemo and post-surgery, if I've learned one thing it's that you can't count on anything and cancer throws you curveballs when you least expect it. SO, we know that there is no macroscopic evidence of cancer anywhere in my body at this moment. It is a wonderful feeling. Or will be when I hear those words come out of my doctor's mouth, hopefully at my Herceptin appointment next week.

Despite pain meds and utter exhaustion I didn't sleep well last night. James was up a few times so maybe that's why (it certainly had Daniel up as he is tending to her and letting me sleep). She seemed fine today and went to daycare, but had a bit of a cough and a fever at bedtime tonight. So, hopefully she will sleep soundly (for everyone's sake) and come out of it tomorrow. I'm still not supposed to be doing much and Daniel's got a lot of work to do, so hopefully she'll be content to snuggle and play and watch some movies Saturday. 

I am a bit more sore from surgery today than I was yesterday (I'll include a snap Daniel took yesterday before they took me away -- before any anesthesia, believe it or not), but doing fine. Probably not relaxing quite as much as I should but that's nothing new. The incisions are covered by a flesh-colored surgical tape at the moment, so I can't see anything, but it is nice to not be tending to that awful scab and whatnot anymore. Too bad I just bought a ton of peroxide and bandages the day before they told me I was having it removed. 

I did the radiation simulation today. I watched a video about how it works and what expected side effects are. In addition to all of the side effects I listed before, apparently radiation can/does make your white blood cell count go down. Nothing like chemo, apparently, but still a concern. They really drove the point home that I will be tired and within a few weeks of starting I'll burn and probably start peeling. Hopefully that's the worst of it. 

For the simulation/staging, I laid down on what looked like a garbage bag sitting on top of a CT scan machine. It was filled with some kind of warm, chemical compound that expanded then hardened around my upper body, creating a shell or, as they call it, a cradle. This will be used every time I come to radiation so my body is in the exact same position every day. I went through the machine, once breathing normally and once holding my breath and using a snorkel type of breathing tube and clipping my nose shut. They may use this to have me hold my breath, 20 seconds at a time, so they can target certain areas of my chest wall but hopefully avoid my lungs. Just days after learning of a woman's lung issues post-radiation at a Gilda's Club meeting, I'm all for avoiding my lungs. I got two new tattoos! On each side of my abdomen so they can line up the machine perfectly. An extremely surreal experience, laying (topless, which no longer phases me) on a machine as 10 people swirl around me, taping wires to me, measuring with rulers, tattooing me, marking me with markers, adjusting my position, giving me instructions, and discussing things amongst themselves I could only hope to understand. 

Next they'll call me in about two weeks to come in for verification of the simulation -- make sure they planned and did all of their measurements correctly and that we're all set. Then I start after that. I feel like MAYBE there's one more appointment in there, but I had a lot of information thrown at me today (and, remember, painkillers) so I didn't quite retain all of it. I'll come in every day, Monday through Friday, for six weeks. Apparently there's a possibility of a few more appointments after that target specific areas, but I think that's more for people who had lumpectomies vs. a double mastectomy. I'll be in and out in about a half hour each time, roughly half of that on the table. I'll have the same machine and the same technicians each time, which will be nice. 

That's about it! Next week I hope to still be taking it easy during the first half of the week and just have my post-op appointment, my regular Herceptin infusion and an acupuncture appointment toward the end of the week. James might go to my mom's for the weekend (I understand all of Ionia is apparently missing her horribly) and if so perhaps I'll try to see some of my gals around town for brunch or something (you're on standby, girls).  

Daniel has kept the fire going for me the last two days -- time to sit by it and relax a bit before bed. Have a good weekend everyone!

Piece of Cake

It was an early alarm clock, but we made it to the surgical center on time. I can't remember the last time I was out driving in the morning before the sun was up. The surgery was at Beaumont's outpatient center in West Bloomfield and it was nice and calm compared to the hustle of the big  hospital. 

Anyway, it was quick and went fine. The procedure started about 9 and I was awake and talking (albeit groggy) by 10:15 or so. We were home by 12:30. It's obviously not comparable to my last surgery in terms of pain, but some meds are taking care of most of the discomfort I'm feeling. In order to be able to close the incision the surgeon had to remove what he had expanded me to and a bit more. He mostly deflated the left side to give the machine better access to the right side during radiation and will refill it later. I'll be pretty lopsided for the next few months. 

I haven't slept much since we got home so hopefully I should sleep (once again sitting up) well tonight. I'm not supposed to push, pull, reach, drive, or lift anything above 5 pounds for five days, then I think I'm back to 10. I'll have a post-op appointment with my surgeon next week to make sure everything's as it should be. Tomorrow I go in for my radiation simulation and that will be the height of my activity for the next several days.

Thanks to everyone who checked in today! All is well.  

Surgery Tomorrow

Hi, there. Not much to report, but it's been a few days and I'll be out of commission at least tomorrow, so here I am. This week has been busy with appointments. I had my PET scan on Monday. I'm not sure when the results of that will be back. I'm notified when my online chart gets updated so I'm not sure if I'll see it there first or if it's the kind of thing the doctor discusses with you first (which would be my guess...). 

My weekly acupuncture appointments are doing wonders as well. I haven't had a hot flash in well over a week. They were really awful, all night and day when I started going again so that's been a huge and welcome improvement. When I start chemo back up I'm going to go to acupuncture directly before going next door to chemo. He said that should help with controlling some of the side effects of the chemo. 

I had my heart scan today. There was still a little fluid around my heart, but less than last time (2 months ago) so they think it's resolving itself. I have to keep getting my heart checked every three months while doing chemo/Herceptin so my oncologists will still keeping an eye on it regardless, but it looks like it shouldn't be a problem. My original heart doctor from the hospital, Dr. Trivax, did a double take when he saw me there. I don't think he recognized me at first -- vertical, with hair and wearing something other than a hospital gown. No offense, but I hope I don't have to see him every again -- or at least until next January when they want me to check back in. 

Speaking of Herceptin, there was a little confusion this week -- a phone call saying I had to start coming in weekly for it, then a return call a few hours later saying to keep coming in every three weeks still... I'm really hoping this week of weird misinformation and miscommunication will be the last of it. So, I'll go in next Thursday for my regular infusion, then back again three weeks after that. 

Surgery is tomorrow. James is spending the night elsewhere tonight, Claire's at her mom's and we'll be up and out the door by about 6:30. I think the procedure itself should be over by about 10 and they said I'll be there "most of the day." I can't imagine it will be anything like waking up from my last surgery so hopefully we'll be able to head home by mid-afternoon. 

I'm scheduled to go in Friday for my staging or radiation simulation. They were going to call my surgeon to make sure I'll be allowed to put my arms up for that and I haven't heard back so I'm planning on it. 

On that note, I should get going as I'm going to try to do a few things around the house this evening and make some soup that should feed me for several meals while I'm laying low. Thank you for the continued good wishes and generous gifts and donations. We got some Whole Foods gift cards today that definitely be put to good use! 

WAIT! Another Change of Plans.

As I said yesterday, I'm learning there's no such thing as a plan set in stone. I didn't expect another reminder quite so soon. I went to my appointment with the radiation oncologist today, Dr. Dilworth, as my medical oncologist told me to. Long story short: somewhere in the game of telephone the information got miscommunicated and I'm doing radiation first. He was at tumor board, that was always the plan and that's what's next. I still have to do chemo again, unfortunately, but first, radiation. 

When his resident, who came in to question me first, reported back to him that I was starting chemo next week, Dr. D got both my surgeon and oncologist on the phone before talking to me. He assured me that everyone's on the same page, apologized profusely on behalf of "the team" for any miscommunication and explained why this is the best plan. It was a more confusing couple of hours than frustrating. And, the more I thought about it, I realized there were many positives to doing it this way. More on that later. 

He said, especially considering how extensive the cancer was when they got in there, it makes sense to attack the area directly with radiation first since that's where we know there was cancer and therefore a likelihood of stray cancer cells if any, especially because the cancer remained so near the skin even if I had clear margins during surgery. The cancer was all the way to the skin at one point and was visible and red this summer. It's great that the chemo was effective enough to get it away from the skin, but there could have been stray cells left behind (is essentially what I took away from his more scientific explanation). Then later we'll do the additional chemo which can perhaps catch any cells that may be lurking in other parts of my body. Daniel's question when I returned home was, "But if we did the chemo first wouldn't it also attack the cells in the breast area if there are any there?" Good question and I wish I would have thought to ask it. It doesn't sound like that would have changed the course of action anyway, but is worth asking. My guess is, smaller target and lots of scientific study about radiation and its effectiveness were behind the decision. 

Although it kind of felt like "Who is steering this ship?!?!" at first today, by the end the new plan made sense to me and I'll saddle up. SO, all that time we had for my incision to heal? We don't have it. He got my plastic surgeon on the phone (who was in the middle of surgery so I pictured him on speaker phone or with some resident holding the phone up to his ear like in the movies) so we could figure it all out while I was sitting there. They chatted in the hall and he said I have to have that surgery to remove this scab and fix the incision. Some people just get a little bit of radiation. I'm not one of those people. He said I'm getting the whole arsenal so I need it to be healed so my skin is in the best possible condition before we start -- and we need to start ASAP. 

As soon as Dr. Sherbert was out of surgery, his office called and we set it up. So, I'm having surgery next Thursday at an outpatient facility in West Bloomfield. The procedure is relatively quick (about an hour), but they said I can expect to be there all day and can expect to be on my butt for another week after. JUST as I was returning to life and becoming physically able to do most everyday tasks short of lifting...back in bed.

This also means no more expanding. I am what I am. In fact, in order to get the skin to close after they cut out the scab (sorry to the squeamish folks), he may have to deflate me a little (not sure what word to use there...) to get the skin to close. Using this cream for the last couple of weeks helped since the area has definitely shrunk and I'll keep using it up until surgery I guess, so the scab is as small as possible. Is this too much information? I can't tell anymore. 

Anyhow, within a couple of days of surgery, I'll go in for "staging" for radiation, where I will lay there and they will measure or take pictures and do math and science (I don't know) so they can plan exactly where to target their science beams for radiation (I really should learn some of this terminology). My body can't change after that at all because it would screw up the staging, thus, no more expanding. And after this intense of radiation the scar tissue will be so tight under the surface that my skin won't stretch, so that's why they can't do it after. 

SO, surgery Thursday, two weeks to recuperate, then daily radiation for six weeks. Depending on when we are able to do the staging I'll start by the end of the month and be done by early March. He said it's going to be intense, my skin will "change color" (he wouldn't/didn't use the word burn), peel and be painful. I'll likely be tired. 

So when do I start chemo after that? He said there's no set protocol as it's not necessarily common to do more chemo after radiation. He's sure my oncologist will want to get started ASAP but he's going to recommend waiting at least two weeks. That will allow my skin to start to turn the corner before chemo, as it gets worse after radiation is done before it gets better. Then, the chemo will make my skin worse again. He said my job through it all is to keep the area clean and dry, no perfume, lotions, oils, etc. unless they give them to me. 

If everything goes according to the new plan (plan, ha) then it sounds like I'll start chemo late March and hopefully be finished late May or so. Kind of a bummer that my hair will be even longer only to (likely) lose it again. Oh, well. I suppose that's the least of my worries. 

I'm still doing the PET scan Monday so as long as that is clear as we think/hope, there should be no more changes to the plan at this point. 

The bad parts: still have to do chemo, what a doozy of a day mentally and not happy about having to have surgery, total plan change with expansion, etc. 

The good parts, and there are many: I'm feeling better all the time, but I don't feel strong. What a crazy seven months it's been. I get this 8-9 weeks to get my stomach feeling better again, maybe gain a little weight back, get in fighting shape for chemo. And when I DO have chemo it will no longer be "cold and flu season." Obviously I have to be careful whenever, but that does ease my mind a bit. Also, my implant surgery has to be 6 months after radiation is finished. It doesn't matter that chemo will be in that six months, so we're looking at late 2017 for that again! Again, no plans, blah blah blah. But hopes. And there are other things that will likely trickle into 2018, but hopefully most of the big stuff can be done this year. Why does that matter? It doesn't really. It just makes me feel better. 

Thanks for everyone who reached out. It was a busy day of appointments and phone calls and whatnot so I haven't had a chance to reply, but thank you! Tomorrow I have no appointments. I'll try to finish putting away Christmas and will be getting a pedicure that my girlfriends bought me months ago. Then we're shipping James off to spend Saturday night with Aunt Sarah and Gigi so we can go on a date. Not a bad end of the week. 

A Change of Plans

I'm going to cut to the chase. I found out three days before Christmas that I have to do chemo again. It really took the wind out of our sails. That's basically all we knew until today. So, we waited to say anything until we knew more and, thankfully, had some holiday distractions. For some reason it got me almost worse than when I was first diagnosed. It's been a rough couple of weeks emotionally but with some fun family time peppered in. A lot of things I think I had been trying to shove down and away behind my tough-ish exterior came to the surface. Anger, frustration, sadness, fear. BUT, two weeks later, there's a plan in place, I've got my big girl pants on and I'm ready (well, as ready as I can be) to do what I need to do. Or let be done what needs to be done. 

In short, I have to do four rounds of chemo, every other week starting next Thursday. Everything else is on hold until that's done. So, here's what's going on and why. 

The day after my last post I met with my oncology surgeon, Dr. Benitez, (who in my previous post-surgery blog said she wanted to make sure radiation was the next step, etc.). She took my "case" before the Tumor Board on Friday, Dec. 16 -- a group of 25 oncologists of all kinds (radiation, surgical, medical) who review cases that may not be black and white. This board decided that I needed more chemo and she let me know when I saw her on Dec. 22, although it's up to my medical oncologist Dr. Balaraman (who I saw today) to explain it and administer it all. 

Basically, the assumption is always that microscopic cancer cells have gotten out into the body despite not showing up on scans and tests on the macroscopic level. The fact that there were even a few isolated cancer cells in one lymph node also leads them to believe there were more at some point and that chemo killed some of them (but perhaps some got away). Also, because my cancer is/was (not sure how to phrase it anymore post-surgery) inflammatory, it was to the skin. While the pathology showed the margins were clear -- it was no longer all the way to the skin -- it was still at the layer of the lymphatic system just under the skin, which runs alongside the bloodlines and works in a similar way and very close to it. (I think I'm reiterating this correctly. It was a lot of information).

For this reason they are both concerned that A) my previous regimen of four drugs (2 chemo and 2 anti-HER2 antibody drugs), which is believed to be the best four drugs for my scenario, was not as effective as they would have liked; and B) if any of the cancer cells did get out, with it not being super effective it may not have killed them. 

SO, I now have to have 2 other chemo drugs I haven't had. I'll take them by themselves without the HER2 drugs (including the one I've still been taking every 3 weeks, Herceptin -- that's on hold). Because I'm taking 2 drugs and not the 4 like last time, she's hoping I will therefore have fewer side effects, but that's not a guarantee. I will lose my hair again (my precious one-inch!) and can expect the fatigue, nausea, low white blood count, etc. that I had before but hopefully not as intensely. Especially considering it's every other week instead of every three weeks. 

Once I get through that, I'll either go back to the Herceptin or will be switching to another one she's trying to get me approved for (it's usually only for people who are Stage 4) since the assumption also is that the Herceptin was not particularly effective. 

We discussed many more things re: the future plan post chemo, but that's what's happening now. Monday morning I'll get a PET scan to (hopefully) confirm that there is still no macroscopic evidence of cancer anywhere in my body. I'll also meet with my radiation oncologist, Dr. Dilworth, tomorrow (Thursday), to discuss this new info/regimen and get his take on if radiation is still the next plan, but I can't see why that would have changed. I think she is just wanting to make sure everyone's in the loop and that includes a convo with him. I'm in touch with my naturopath so I can get back on things that support me best during chemo as well. 

My wish to have all this tied up in 2017 is likely not going to happen. I probably won't start radiation until late March and therefore won't be able to have surgery until the end of the year at best. Obviously, this has taught me, yet again, there's no such thing as a true plan. It can change at any moment.

It scares me to have such a weakened immune system during this time of the year with everyone sick, but I'll just have to be really diligent and, maybe, a bit of a hermit. I've remained careful these last several weeks as it is, but now I'm really going to have to be on guard again. At least it's the perfect time of year to be a hermit. 

My appetite is finally back a bit this week in that vegetables, etc. are finally sounding good and I'm tolerating most foods that I haven't been able to eat since the Cdiff struck. My appetite isn't where it was pre-chemo, but I'm going to eat as much as possible in the next week before it starts again. I haven't gained much of my weight back so we'll see what I can accomplish in a week. I have to believe eight weeks of chemo will be a lot easier to get through than the 19 weeks before. Fingers crossed without so many of the side effects, hospitalizations, etc. My regular heart check was already scheduled for next week, so that's good timing. I suppose maybe we should restart MealTrain again, but we haven't talked about that yet. We've been keeping it pretty simple around here for dinner and are still utilizing gift cards we've received so thanks again for all of those. In fact, Daniel's got a bad cold and was working tonight, so I picked the girls up and we had a great dinner at Inn Season Cafe, thanks to gift cards. 

I hope everyone had the happiest of holidays. Here's to more daylight each day and spring being here before we know it. 

Moving Forward

Hi! I'm sitting by the fire catching up on a few things and am slowly starting to feel like a normal human again. Maybe it's because I wore non-pajama clothing and actually left the house today.

We met with my plastic surgeon this morning. He said, in general, I seem to be healing well in that there is no infection, no fluid collection etc. There is one area of concern. On the far right of the right incision (nearest my armpit), there's been a large, flat, blue area since surgery -- thanks to the blue dye they injected me with to find the lymph nodes they removed. Sometimes it doesn't quite heal the way it should over there because of the dye and that may be what's happening with me.

It's basically a large/tall scab instead of a straight line. He's only working for a few hours on Wednesday next week and he wants me to come in. If it's not doing better, he said I'll have to go in for a quick, outpatient procedure to cut around and surgically remove the scab and resew the area. (Not sure exactly when that would happen). This does not sound like fun to me, despite the fact that he said it's really no big deal. Of course, it's pretty ugly so if it's going to heal up quicker and prettier, I guess that's good. He said they will not proceed with radiation until I'm 100% healed so we can't wait indefinitely to see how it's going to heal. We've only got a matter of weeks to deal with before they need to get going with radiation. 

On that note, he started filling my right side today which I thought wasn't going to happen for two more weeks. I forgot that he will only fill the right side until radiation is over -- the machine can get a better angle if the left side is flatter. SO, I'll be quite lopsided for the next three or four months. Then, when radiation is over, he'll fill the left to match over the course of several weeks. This process is supposed to be quite painful, from what I've heard, but this first one isn't so bad. At least not yet. It's definitely more uncomfortable than the left, but not too bad as long as I don't stand up super straight. (I think I'm going to be a hunchback by the end of this). 

Now that I'm three weeks out from surgery, he said I can use Advil/Motrin which should help my discomfort more than Tylenol. We'll see. I meet with my oncology surgeon tomorrow, I think to go over my pathology report in detail and perhaps she'll have more details on when radiation needs to get started. Past conversations lead me to believe radiation (every day for six weeks) will probably begin mid-February.

Today the doctor said we can't complete the reconstruction until six months after radiation ends. Post-surgical complications, infections, etc. go way down if you wait at least six months. So, if radiation is done early April, that puts my surgery to remove the expanders and put in implants in October. I really thought all of this would be over before then (not to mention these stiff expanders are no picnic), but as long as it's all done right the first time I can handle it. 

I'm still really sore and not sleeping great, unfortunately, but most things are getting better every day. I have had a couple of tough days, mentally. It's tough to wake up in pain every day for this long, even if it's not major pain, and to feel helpless at home. I'm trying to not be too hard on myself and just let myself be frustrated and sad if that's what I'm feeling. My guess is not sleeping great contributes to this. Most days I'm doing just fine. I'm grateful to have the cancer out of me and to see and feel improvements every day. I'm good more than not and the holidays will be a lovely distraction. James is really pumped about all the presents she's being told are coming her way. :) 

I still can't lift more than 10 pounds and need to restrict my movements (reaching, pushing, pulling) as much as possible. The more restricted the better and faster I'll heal. So, I'll do my best -- following orders and hoping for things to move along quickly.

Next week I'm finally returning to acupuncture -- my hot flashes are still driving me crazy, so I'm eager to get back into it. Perhaps it can help with my sleep too. I've got my regular Herceptin infusion next week also.

We're going to lay low over the holidays. It will be strange not to see either of our families on Christmas Eve or Day, but I think we need some down time at home together. If I was a little further out from surgery I might be more up for travel, but this year we just need to hang at home. Hopefully after the New Year I'll really be feeling better and can be out in the world more (and a lot more helpful at home too).

Happy Holidays, everyone! And thanks for the continued support. I love getting everyone's holiday cards and seeing all of the family photos. :)

Pathology Back

My surgeon called to let me know the pathology on everything they removed during surgery. The bad news is that things were worse than they thought. The good news is, that means the mastectomy was 100% the right thing to do. 

The MRI underestimated the amount of cancer left. Apparently they examine the tissue in quadrants so all four quadrants of the breast still contained cancer and there WAS some of the original tumor left (which didn't show up on the MRI at all so we thought it was totally gone). But the margins were clear -- meaning it was all contained and there are no cancer cells on the outside edges of the tissue that was removed. 

They also dissected and examined the lymph nodes they removed and found isolated cancer cells in one of them. She said they are still considered "negative" as any node with less than 200 isolated cancer cells (individual cells that they actually count) is considered negative. I asked if this meant there could be isolated cancer cells in other nodes (still in my body) and she said no. They were only present in one node. If cancer cells had been throughout the five nodes they removed it might be a different story. So, they don't need to go back in or anything. This is a huge sigh of relief -- my armpit hurts enough with just the five taken out. So, while my heart stopped while she was talking to me, everything's okay. It just confirms as well that we got this in the knick of time, since the cancer was certainly heading out to the rest of my body. 

It was five weeks between when I first contacted my doctor to when I was diagnosed and within a week or two of being diagnosed my body was making it clear that something was wrong. If I hadn't been a little proactive before anything major was happening -- If I had waited until things were really obvious in late June -- we would be telling a different story today. I had pain for 2-3 weeks before I saw something seemed off on May 8, Mother's Day. I was diagnosed June 14 and started chemo July 7. I don't want the masses (or even James, who no doubt will have the potential for breast cancer hanging over her head her whole life, unfortunately) to be paranoid, but I can't stress enough -- if you think anything seems off, just go get it checked out. I was worried about seeming "paranoid" so I waited until something appeared off before I said anything to Daniel, let alone contacted my doctor. Better to be paranoid than the alternative. I will still be worried for the rest of my life that cancer is going to show up somewhere sometime. But it sure seems we caught this in the knick of time. Know your body. Be proactive. Use me as an excuse if you need to. Whatever. 

The surgeon's office is supposed to call me today (Monday) to set up an appointment for later in the week, I think just to go over the full path report in person. She said she is going to talk to my oncologist to confirm that radiation is the next step. At that I panicked, and asked if more chemo was a possibility. She said sometimes that can be the case, but no, I should be all good to move on to radiation once I'm done with the expanders. She still needs to pow wow with my oncologist about it first though. I love that everyone on the team is always communicating with the others, as has been the case throughout the last six months. 

That's about it. It was great having James here for the weekend. We had some good snuggle time on the couch watching cartoons. She, of course, loved the time with the rest of the gang here while Daniel had a little much-needed downtime to himself. My mom headed home today. I'll probably head home in a few days and will just have to try my best to do nothing despite wanting to jump in here and there. On that note, I've probably been typing far too long! Hopefully it should be pretty quiet around here for the next few weeks. Hope everyone is enjoying the snow -- at least it's pretty! 

Not Much to Report

Not a whole lot to report, but I'll update that I did, in fact, get the drains out yesterday. When we got to the doctor, he looked at my record of the drains' output, examined me and just said, "Wow." My sister and I looked at each other and I asked, "What does that mean?" Wow can mean so many things in this situation, but this time it meant that he was impressed with how well I was doing!

Apparently the drains were ACTUALLY supposed to stay in for 2-3 weeks but because I was doing so well they could come out. Whew. He said he could tell I was truly doing nothing but resting and that's why they are healing so well. He told me to keep doing that for 2 more weeks. When I come back in two weeks, if all is healing according to plan, I then come back in two more weeks to begin filling the expanders. If what he told me last month is true, I'll come in weekly for 6-7 weeks to expand before starting radiation. 

I am much more comfortable with the drains out but, unfortunately, one area bothering me is not feeling better with them out. So, I'm still pretty uncomfortable, but what did I expect 10 days after major surgery? I'm getting tired of being sore, but it is getting better every day, so that's good. I just have to remember that just because I CAN do something doesn't mean I should -- I really have to stay on my butt doing nothing. He said that's even more important now that the drains are out. At my appointment today I read a magazine and by the end of it my right (page flippin') side was really bothering me -- so, maybe I'm not ready for magazines yet...

That being said, my sister offered for me to stay at her house a little longer as there's no question I will likely do more at my house. Daniel agreed that it was a good idea so I'm going to take her up on it and will not be going home this weekend as I'd planned. Whatever I need to do to get through this quickly and according to plan with no hiccups or infections.  

James will spend the weekend here, so it will be nice to see her more even though I still can't play with her much or let her sit on my lap, etc. And Daniel will get a little time to himself for work and a friend's wedding over the weekend.

Today I went in for my regular Herceptin infusion, which was quick and painless. So strange (and wonderful) to be in and out in about an hour. My pathology isn't back from the surgery yet, so I didn't meet with the doctor, but I have to believe it's coming soon. That's about it! This week I have forced my mom to watch a bunch of comedies she somehow never saw, so I'll continue that this weekend before she heads home. Next up -- Elf! 

Hello From the Other Side

Hello! I made it to the other side and am finally logging on to a computer for a few minutes. I'm feeling much better every day. The trick is to still lay low and take it easy for a few weeks although I'm starting to feel better. 

Everyone's still taking good care of me and keeping me comfortable. It's gone from more of an overall blinding pain to being uncomfortable and more specific pain in certain areas on and off. Progress. Every day gets a little better. 

Daniel and the kids visited on Saturday, which was lovely. James was so excited to be at Aunt Sarah's with Gigi, so I was chopped liver. Which was fine with me. It was great to see them. I had some other visitors that day too. My little basement cocoon was pretty lively there for a little while!

I'm sleeping OK, despite sitting up, but still feel awfully tired. I suppose my body is working pretty hard to heal right now and I should work in a few more naps.

I guess I don't have much to report as I'm not up to much! I feel very lucky to have such good caretakers and a safe, comfortable place to recover where we don't have to stress about a toddler trying to climb on me. I go to the plastic surgeon on Wednesday and I think I'll get these drains out. If they are any indication, I'm healing well and hopefully they'll come out as planned.

Thursday I go in for my regular Herceptin infusion. If the pathology on my tissue is back by then I might go into my surgeon's office that day too for my follow up, as it's on the same floor. If not, I'll wait until next week for that. I don't know what to expect at that appointment I guess, but they will have tested what they removed and will be letting me know their findings. 

Mentally I'm doing fine. Way better than before surgery. Maybe the physical challenges have overpowered anything mental, but for now, I'm fine. It's over and, therefore, the anxiety and anticipation regarding it is over too. So that's a good thing. There are still some variables and a lot of things yet to accomplish, but physically I think this will have been the worst and now it's over. I got a little overwhelmed and lightheaded when I finally showered and we were changing my bandages for the first time. I think that was more about having gone up two flights of stairs and standing for longer than I had in several days than anything else. I'm eager for the drains to come out as visibly that looks strange and does kind of weird me out (for lack of a better way to describe it). 

That's about it! More later when there's more to report. Until then, I'll just be resting and relaxing. Thanks for all of the cards, flowers, gifts and well wishes. They have all put a smile on my face!

Out of the Hospital and onto the Couch

We sprung Kirsten from the hospital this morning with the help of a few sticks of dynamite and a mule. She's now camped out on a plush sectional sofa at her sister Sarah's house where she will be recovering from surgery for the next few weeks with the extra help of her mother. 

Kirsten has a high pain tolerance so last night when the nurse asked her to rate her pain on a scale of 1 to 10 and she chose "10" I knew it was bad. After I mentioned that a 10 should be reserved for being flayed alive she agreed to downgrade her rating to a 9. But still. 

Currently she's getting down food and I think her pain meds are working well. She also couldn't be in better hands than she is at the moment with two Type A personality caregivers working diligently to meet her every need. 

Thank you again to everyone who reached out to check on her progress. I'm sure she'll be able to post an update of her own soon enough.

Daniel

Surgery Went Well

Hi Everybody,

This is Daniel. I'm just writing a quick note in between feeding James and chasing her to the bath. Kirsten's surgery went well today according to both of her surgeons. The biggest worry for us going in was that they would find cancer in her lymph nodes but we're happy to say they tested negative. So we're breathing a huge sigh of relief. 

Naturally Kirsten is groggy and in a lot of pain from the surgery. But I did a quick test to make sure she was still herself. Background: she is really uncomfortable with impromptu or acapella singing or poetry, especially if any eye contact is involved. So the first thing I asked as she lay there post-op, unable to move her arms or open her eyes all the way, was if she would like me to perform some slam poetry for her. She mumbled: only if they knock me back out first. 

Kirsten was touched by the outpouring of messages and thoughts today from everyone. She won't be able to use her phone for a bit so if you don't hear back from her that's why.

Daniel