Fingers Crossed

Well, Thursday's the day we find out what my immediate future will look like. Everyone cross their fingers and toes that the studies and tests and science has shown that I can be done with my treatment now. If that happens, the clock of "you are considered cancer free" starts ticking. 

Thursday the doctor will tell me whether, according to one study, I can be done with my infusions or I need to continue on with Perjata alone and, according to another study and the findings from testing my tumor tissue, whether she recommends I start taking a chemo pill. It continues to be a kick in the pants that my particular cancer has the characteristics it does. 100% Estrogen Receptor positive, HER2 positive. Sometimes I feel like the Big Bad Wolf is lurking over my shoulder while I attempt to field the information, tests, studies, blogs, advice from doctors, advice from not doctors and what makes sense in my own brain to keep him at bay. Some days I put my head in the sand, some days I let it overwhelm me and some days I go into attack mode, trying to understand as much as I can, like I did in the beginning. 

I feel like my body needs a break. And my mind needs a break. I really hope everything is in place for me to just stop. Obviously there's a lot I won't stop. And I won't go into it all here. But my hope is that I hear I'm done with Perjata and my tumor was majority HER2 positive, so no chemo pill. Everyone send your positive juju to Beaumont Hospital around 10 a.m. Thursday. I suppose juju doesn't change the tests and the facts, but it can't hurt. 

Meanwhile, since I last posted things have been going well. I had an infusion just before we left for vacation. I was sure I would be locked up in the house, but it turned out I felt pretty darn good for most of it. I continue to sleep terribly many nights, mostly because of horrible hot flashes, so that was certainly an issue on vacation. Saint Daniel got up everyone morning with James so I could sleep in. They had a ritual of going out to breakfast while the rest of the house slept, Claire joining them most days. 

As far as sleep, last night was probably my worst night yet. Sweating to death one minute, then it stops and I'm cold. All. Night. Long. I almost feel like it's worse than when James was a newborn, but that can't be true, can it? The natural stuff I have been taking seems to have been working, but then I still have a few nights here and there that are just awful. I got my most recent Zoladex shot last Thursday so maybe in the days after it's worse? I should probably keep some sort of journal so I can try to figure it all out, but right now I guess I just don't have it in me. Or maybe it's just getting progressively worse now that I'm a couple of months into menopause. I don't know. 

I also just don't have it in me to make the effort to post photos from vacation, but boy was it beautiful. A week on the cost of Maine. While my friend Erin, a college roommate and incredible human whose house we stayed in, was away all but the last two days of our trip with her family, it was amazing to soak up the calming energy of her house (that's perhaps the hippiest thing I've ever said but I mean it -- stay with me) and their life in Maine. We had an amazing 48 hours with them when they returned (but stayed elsewhere so we could still take over their home). We went sailing, we explored quaint towns and I drank a ton of tea while doing puzzles during James's naps. I feel like I really know Erin's husband Alec now, and their two girls are just lovely. Their marriage is perhaps responsible for my own, but we'll save that story for another day. We also got to see one of Daniel's friends from college and her family not once, but twice. They recently moved to Maine from the Philippines and it was great to get to know them better. 

Now I'm gearing up for surgery. I'll have one last visit with my plastic surgeon today (Wednesday) to go over the details. It's hard to believe September is upon us. We've got a quick trip to Chicago next weekend, then Daniel will be away in Toronto the weekend after. I'll hunker down with James and try to prepare for surgery on the 19th. I'll be headed off to my sister's once again. She and Mom will nurse me back to health while Daniel holds down the fort at home. I anticipate a quicker recovery than my first surgery, from what I'm told (which makes sense). 

Daniel's mom and stepdad will be here this weekend for a bit so everyone is excited for that. Some of our friends are getting hitched on Sunday and we're looking forward to that too. James moves into the Pre-K room at "school" and Claire will start high school on Tuesday. I'm so torn between wanting time to stop and looking forward to watching them grow up. I hope everyone enjoys the holiday weekend! The summer has gone by way too fast. 

A few updates

I guess it's been a few weeks since my last update. I've had quite a few people reaching out wondering if they missed an update, so I figured I better get to it. I haven't been in the mood to share and there hasn't been anything groundbreaking going on regardless. But there are a few updates, so here we go.

The last time I wrote was just after Fourth of July. My side effects from the infusions continued to bother me for a few days but I was feeling better just in time for the surprise birthday party I threw on Saturday the 8th for Daniel. With the help of a lot of people, I was able to pull it off and he was surprised. I had something planned last year for his 40th, which he didn't know about, and canceled it after I was diagnosed. I was in bed post-chemo on his birthday last year and it was kind of a bust, as far as I was concerned. I was determined to do something special for 41. We spent the day on Belle Isle with friends from near and far, some of whom he hasn't seen in decades. The weather was perfect and we all had a great time. 

The day I last wrote, the roof of my mouth hurt a little but I didn't think much of it. Within 48 hours a large portion of the roof of my mouth was covered in painful sores. Somehow I made it through a year of cancer treatment with no mouth sores and now I have them! That and my jaw was killing me -- I suppose that's where the joint pain from my new drugs was manifesting itself? So for about a week it was pretty uncomfortable to eat or drink anything. Early the following week one of my natural practitioners gave me a supplement he swore would help. I took that and continued swishing with baking soda and sea salt and, no kidding, the sores were healing up within 48 hours. I'm still in the clear. 

We had a busy couple of weekends heading home to Ionia for the fair. James had a great time, loved the caprade (parade), was introduced to and is now obsessed with cotton candy (I'm looking at you, KK), rode many rides, sampled her first elephant ear, and got to pal around with various cousins, aunts and uncles.

In between the two fair weekends, I went back for another round of the Herceptin and Perjata. I have two more of them together, the last one being on the Aug. 31. My doctor still doesn't know if that's the end or if I will have to continue on with more Perjata. She said she is literally calling whoever did the study to try to get the rest of the data (I have no clue how that works) and now she's on vacation for a couple of weeks so I won't know until I arrive on the 31st whether that's my last one or not. If it is, my plastic surgeon said he can take out my port when he's doing my reconstruction on Sept. 19. Everyone cross your fingers and toes on that. I really want this thing out.

BUT I want to do whatever is best for me. Unfortunately, that means the end of the tunnel may not be here quite yet. At my appointment on the 20th, Dr. B told me about yet another study that was just released. I'm positive these studies are helping to save my life but.... UGH. Anyway, in the weeks until I see her next she's going to have my tumor samples tested to see how much of it was HER2 negative and how much of my tumor/cancer tissue was HER2 positive (I thought it was all or nothing, so what do I know). If the majority of what was left was HER2 negative, she wants me to do more chemo. MORE CHEMO. A chemo pill. She explained why but honestly, I should record these conversations when I'm alone because my mind either goes blank or races -- I'm not sure which -- and I just don't retain it all. I'm not sure if it's the chemo brain or the shock of another freaking fork in the road. There was discussion of it reducing mortality rates (good) and decreasing chance of reoccurrence (also good) and how it took them a while to figured out the dosage in the US because it was working like gangbusters in Asia but was sending Americans to the hospital (confused and feel overwhelmed by information? Me too). I'll either literally have to record her on the 31st or take Daniel to be my personal recording device.

At least I'm assuming she'll have all the info by then anyway. She's not saying that I need to do it for sure -- she honestly has no idea because they didn't test the tumor for this when it was removed. She just said it's a possibility and wanted to let me know she would be testing the tissue, etc. If I do, she said this pill (I forget the name) doesn't have all of the side effects of the other chemo -- no hair loss, no major nausea, etc. Just one side effect that I just can't seem to shake. I'll be chained to the bathroom, which will be nothing new, but boy am I sick of that too. Because my system is so delicate right now, I'm afraid to eat or drink if I have to leave the house or transport James anywhere (have you ever tried to get a 3-year-old to move quickly into a gas station bathroom?). These are things I never thought I would share with people on the Internet. But why be bashful now? This is cancer.  This particular side effect has been really exhausting and frustrating in recent weeks. The idea of prolonging this even further... I don't know. On one hand, sure, it could be worse. On the other hand, I'm feeling more and more like a shut-in and it's not fun. I guess I'll find out on the 31st and go from there. I suppose I could always not do it, even if it's recommended. I guess we'll have to cross that bridge at the end of the month.

Anyway, there are a lot of questions right now and hopefully answers coming in the next few weeks. I had my second Zoladex shot last week, which for some reason was not quite as bad as the first. I also had a bone density scan that day. Honestly, I can't remember exactly why I'm doing that. I'm not being a very good cancer secretary right now. I think it's to get a baseline because the shot and my new daily pill can have an effect on your bones and they can compare future scans to it. The results were posted online and said there was improvement in certain areas -- but I don't remember there being any areas that were problematic to begin with. Something to ask my doctor about at the end of the month I guess. Either way, there was nothing negative listed, so that's good. 

I also visited my plastic surgeon who explained in detail what he will do during surgery and what the desired result will be from the outside. So, that's all set. I'll see him one last time a couple of weeks before surgery to make sure we're all on the same page. 

We have a couple of getaways planned in the several weeks between now and surgery so there is a lot to look forward to. Next up, we all head to Maine to stay at the home of my good friend Erin from college. She and her family will be away on their boat for most of the time we are there, returning for the last couple of days of our trip. It will be the four of us, plus a friend of Claire's and I'm just hoping I feel well for the majority of the time I'm there. I have an infusion the day before we leave, so fingers crossed.

James and I headed back to Ionia last weekend while Daniel was at his Grandma Johnson's 100th birthday party in Scottsdale. While we were to attend a friend's wedding celebration over the weekend, we headed back a little early after my uncle Paul passed away suddenly last Tuesday. I am happy he, my Aunt Maggie, Cousin Tim, his girlfriend Emily and their daughter Edie all had spent the weekend before that together for the fair and it was well-documented by Maggie, the paparazzo. This was the first time in our family in many, many decades that anyone has died unexpectedly. Perhaps we are lucky in that regard, but it was quite a shock. One benefit to the majority of the family being in Ionia is that the troops immediately rallied. As we gathered for his celebration of life, we all felt like he should have been there. Perhaps we need to flip the script and start celebrating people a little more while they are still alive.

I'm continuing to contemplate and navigate what my new normal when this is "done" is supposed to look like. It can feel overwhelming and confusing. Throw in some menopause hormones and holy cow, life is a roller coaster sometimes. How do we truly make the best out of the short time we've been given on this planet? What does it look like? I haven't figured that out for myself just yet, but Paul was certainly an example. He enjoyed the world around him, pursued his interests with passion, loved and was loved in return.  He will be missed. 

A Little Update

Hi, there. I hope everyone had a good weekend and Fourth of July. We didn't do much, which was great. Friday was our fifth anniversary, so Daniel and I spent the day in Ann Arbor. We started by sharing a bottle of Prosecco while walking around the farm where we got married, Misty Farm. It is such a beautiful place and just felt good to be there. We were lucky to stumble upon it just as they were starting so we got a great deal on it and lots of improvements had been made by the time we got married more than a year later. They have a second property just down the road now too. If a pile of money falls from the sky, just roll with it if we invite you to our 7th or 8th anniversary there (they are now booked years in advance), because I would love to do it all again. 

We then went to have lunch at Eat Ann Arbor, which catered our wedding and now has a carry-out location with a little deck where you can eat. They were just building it out when we went there for our tasting. It was delicious. When people contact me to do their wedding, I always send them Eat's way. 

Then we just walked around Downtown Ann Arbor for a while, got some coffee, popped into a few shops, then headed home just as the storm hit. It was all Daniel's idea and I'm so glad he thought of it -- it was a great day. 

Saturday we were home and Sunday we went to the Tigers game with some friends who had front row seats in right field. It was crazy hot, so we ducked into the shade for most of the game. The heat + my hot flashes, I kind of wimped out. But we had a great time (the Tigers, however, did not. They were crushed by Cleveland.).

The rest of the long weekend we stayed pretty close to home. The effects of Thursdays infusions started to hit me Monday, were the worst on the Fourth of July and are still around this morning (Wednesday). People keep asking what kind of side effects they give me, so I'll just say I need to stay near a bathroom. Daniel took James to different parks twice yesterday for a long time so it gave me a quiet morning and the time to do some house upkeep in the afternoon. Sometimes things go a little quicker when my "helper" isn't helping. :) 

So, yes, I had my infusions of Herceptin and Perjata on Thursday and will have them every three weeks through August. Pretty exciting that I could be done with infusions by Labor Day. Unfortunately, one of them is just before we leave to use a friend's empty house in Maine for a week, but hopefully the side effects won't be as bad as this time. They gave me bigger "loading doses" for this first one, so this is probably the worst it will be (and it hasn't been TOO bad). 

Last Thursday I also got my first shot of Zolodex. Obviously shots aren't fun, but holy cow, this one hurt! The nurse warned me, but I was not prepared. It hurt for two days after too. Fortunately it mostly subsided by day three. Turns out it's a little bead they inject into your belly -- not liquid -- so, as you can imagine, ouch. It then slowly disperses/dissolves over the course of the month, shutting your ovaries down for the month. Then I go back for more when the month is up. I have to do this every month until natural menopause or until I have my ovaries removed. 

They also gave me a prescription for Arimidex, a daily pill, which essentially stops your body/cancer cells that may exist from absorbing or feeding on estrogen. I haven't picked that up yet -- maybe by this afternoon I'll be okay to venture out a bit. 

To be honest, on Saturday I felt like I was on an emotional roller coaster. I don't know if it was the Zolodex or a lack of sleep and a cranky 3-year-old. I'm not looking forward to adding Arimidex to the mix. My hot flashes are all day long, but so far, no real joint pain, which they warned me about. My hips hurt a little this morning, but not too bad.

I think in the next couple of days I'll start feeling better and should be in good shape by the weekend. I'm a total weakling, so I'm going to try to start taking advantage of my "good" days by at least walking and trying to be a little more active, eventually getting back in the gym. I get winded very easily, have no stamina and feel like I have no muscle left. I'm not going to rush it, but I can't keep doing nothing and expect to just show up at work one day able to be on my feet shopping and cooking for several hours. So, hopefully I can build up a little before surgery in September sidelines me for a few weeks. 

I've got a few teeny tiny baby hairs that are starting to come in. Last time, my hair all grew back at once, starting to grow the last week I had chemo. This time it's a few little hairs here and there. It makes me feel like it's going to take FOREVER to grow back. This morning, out of nowhere, James asked why my medicine made my hair fall out. Quickly followed by, "Can you take some other medicine to make it come back?" It was pretty sweet. I showed her my little hairs and she got very excited that it's starting to grow. I'm figuring, if it grows at all at the rate it did last time, by Christmas I should have about the same length I had before shaving it this last time. In the meantime, I finally found a couple of hats that fit my tiny head and aren't giant sun hats. It's pretty nice to wear them and go cancer incognito -- I can go to the store and people don't stare or even look at me. Ha.  

That's all I've got! I hope everyone had a great holiday. 

Keeping Busy

Lots of appointments this week. I have to think those are going to slow down a LITTLE bit. 

I met with my radiation oncologist Wednesday. He said my skin is healing great and to keep moisturizing and stretching (I haven't been super disciplined about that) so my arm keeps a good range of motion. It hurts to stretch my arm above my head still (since surgery, really) and perhaps more stretching can help with this. He said the skin should lighten over time -- it's still super dark on that side. (I'm not really worried about that too much, to be honest). 

I also met with my plastic surgeon. We're going to meet a couple more times to make sure everything is exactly like he wants it before surgery -- he actually fills the expanders past what he actually need to give himself extra room/skin to work with in surgery. Surgery is slated for Tuesday, September 19. They said it will not be quite as bad as the first surgery -- which makes sense. Much less going on. And there will be no drains this time! Yay. My sister has offered for me to stay at her house again. She has a trip planned that weekend with her family, so hopefully we can work everything out and I can find a sitter for myself. :)  I'll need a good 1-2 weeks of absolute resting and another 2-4 weeks before I do any significant lifting. He's recommending I wait until after surgery to go back to work so my body has time to rest and get strong. Physically I'm not really ready to go back to work anyway, but that seems pretty far away. We'll see. Maybe I can do a few things here and there in the meantime. 

Today I had my heart checked. She had a tough time seeing certain parts of my heart because of my darn expanders being in the way, but from what she could see, she said everything looks normal. I had no fluid and my function was fine. She said there's a chance they will order a Mugga (? Something like that) scan so they can see everything, but because what she could see looks good, hopefully not. 

That's about it. Not as many appointments next week, which will be nice, so there will not be much to report. I'll have my infusions of Herceptin and Perjata on Thursday, as well as my first Zoladex shot. And I suppose get my prescription for Arimidex. 

I have a hard time feeling like, because I no longer feel the worst, that I should get back in action, back to work, not rest as much. I still don't feel great, am quite tired, get lightheaded, etc. Part of that is probably just my body being darn tired after a year of beating it up in various ways. Some of it might be my low hemoglobin too. Hopefully that's climbing though. I had two days of all day appointments -- being gone from 8:30 a.m. to 5 or 6 -- then yesterday afternoon could not keep my eyes open. So, I'm trying to remember to take it easy on myself, but it's difficult.

That's about it. I really hope it doesn't rain ALL weekend because boy do we get a little stir-crazy (and it's tough for Daniel to work) when James is in the house all weekend. She loved her first gymnastics class, so she's looking forward to going back tomorrow. As soon as it was over, she wanted to go across to the other class of "big kids" in progress across the lobby. It's really freaking adorable to watch a bunch of 3-year-olds jumping and balancing and attempting to do somersaults.

The Next Step(s)

I went to my appointment Thursday and my numbers were great -- well, my white blood count anyway. Over 4. My hemoglobin is still only 9.6 (again, it's supposed to be 12), but it's slowly climbing (up from 9.4 on Monday) so she's just going to leave me be and is confident it will come up sufficiently on its own. It probably seems crazy, but that number being over 4 does make a huge difference while on germ watch. I'm significantly less afraid of my kid's runny nose or touching a shopping cart or door handle, while still careful. And you would be surprised how many people cough RIGHT AT YOU when you are out in the world. I never paid much attention until the last year. 

So, what's next? A few things. For starters -- remember how I was saying I needed 4 more Herceptin infusions and probably 10 more Perjata infusions, all 3 weeks apart lasting months and months? Well, it turns out they released the initial findings of the study my oncologist was waiting on and you not only CAN take them together, you're SUPPOSED to take them together. Had she known that, I would have been taking the two of them together all those months I was just taking the Herceptin. So, for now, I'll be taking the two of them four more times, starting June 29. She's waiting on the rest of the study's findings but there's a good chance that will be it. (If not, I will need 6 more Perjatas after that.). So, there's a very real chance that I can be done with infusions in about 12 weeks. BY THE END OF AUGUST. Not getting my hopes up, but... getting my hopes up.  

On Friday I'll have my heart checked. Both because the chemo I was just on is particularly hard on your heart, so they want to check it and compare it to my where it was before. Also because Herceptin is also tough on the heart so they'll have a new baseline to check against after I'm done with my infusions. 

One big question I had was, "So when can I get this port out?" The port has been sooooo helpful and convenient during the last year. Very few IVs or blood draws out of my arm. Just one quick poke into the port that I barely feel and they can administer any IVs and draw blood whenever they want without me feeling a thing. My blood transfusion even went through my port. I'm not sure how or why anyone goes through chemo, etc. without one to be honest. However, I can't wait to get it out. It hurts when you bump it (seems like that wouldn't happen too often but throw a monkey toddler into the mix...) and is really annoying when it rubs against the seatbelt. Even when you're getting dressed or in the shower you bump it and, while not excruciating, it's annoying. I have an ugly, fuzzy seatbelt cover that helps in the seatbelt department, but it still puts pressure on it and bothers me. I'll always have a scar on my chest from it, of course, but I've always felt like once the port is out I will feel like treatment is over. I know people who have kept it in indefinitely. One person for ongoing bloodwork. Another because the chance of her cancer coming back is relatively high. But I don't care. If it comes back, I'll put another one in. I want this sucker out. It's exciting to think that could be in a few months. 

Other than that it's time to contend with controlling the estrogen in my body, since my cancer is fed by it. The thought being, if there are any pesky cancer cells in my body that somehow survived two different regimens of chemo and radiation, estrogen causes it to grow. So, on the 29th, I'll start two things. I'll start getting monthly shots of Zoladex, which essentially shuts down my ovaries. This will continue indefinitely or until I have my ovaries removed. Since pregnancy involves loads of estrogen, they've told me not to have anymore kids, which I've had a tough time coming to terms with throughout the last year. It's getting easier. Maybe, in addition to just not wanting to have an additional surgery right now, that's why I'm hesitant to immediately go the route of having my ovaries removed. I suppose I'll get there eventually, just not right now. 

I'll also start taking the drug Arimidex. A similar drug you may have heard of (and I have mentioned before) is Tamoxifen. It's similar to Tamoxifen, but better for cancers with my set of characteristics. It is a daily pill I will take for years (10 I think?). She explained to me exactly what it does and it made perfect sense, but I'm not sure I can relay it properly. Essentially it doesn't allow the cancer cells to receive the estrogen and then grow (I think). And you have to do the two together for the Arimidex to work. 

So these two things will put me into a chemically-induced menopause. I've talked to several women who are in the midst of it and, quite frankly, it sounds awful. I mean, natural menopause doesn't sound like a picnic either. :) Chemo put me into menopause also -- I've been having horrible hot flashes on and off for a year. But from what I understand, this is worse. I'm not sure whether Googling the side effects was a good idea or not. 

And what do we do going forward? After I'm all done with my Herceptin and Perjata infusions I start returning to life as (new) normal. I go to my oncologist every three months for blood work, with the hope being nothing abnormal is present. She said when breast cancer spreads it shows up in one four places: liver, bones, lungs and brain. If it appears in my liver or bones, the blood work will indicate that. If it's in my lungs or brain, we wouldn't know until I have symptoms. In theory, you could get CT scans all the time to makes sure it's not in those places, but then you could get cancer from all the scans. So, they don't do that. (This also makes me cringe thinking about all the CT scans I've had in the last year...)

She said I do those three-month checks for the first two years. After that, maybe less often? I'm not sure. So, that's where we're at. This week I have a check-up with my radiation oncologist -- I think just to see if I've continued to heal well. I'll also meet with my plastic surgeon to set a firm date for reconstruction -- which I think is actually going to be closer to mid-September. It just has to be six months after radiation ended, which was March 16. 

It's Sunday morning and we're waiting for Daniel to wake up so we can do whatever he wants today, followed by our annual sushi dinner. James has allowed me to sit here and finish typing for about as long as she can stand, so I better go wrangle this turkey. I realize you probably won't read this until you wake up to an e-mail Monday morning, so I hope everyone had a nice Father's Day!

One Year

It's been a pretty uneventful week fortunately! My numbers dipped as expected but I've mostly felt good physically the last several days. I had a busy weekend running around in the heat with James and it was a blast but completely tuckered me out -- probably a bit too much activity, but oh, well. At last check Monday my numbers had come up slightly from Friday, so hopefully they'll keep doing just that. My white count is 2.4 and my hemoglobin is 9.4. So, both are still on the low side, but doing fine. A little perspective: my white count was 2.7 when I started chemo this time around (and is roughly 4-10 for the average, healthy person). Today my temperature has been up a bit, between the mid-99s to the upper 100s, and I've had the chills on and off. But with my numbers where they are, I haven't even bothered to check in with the doctor. This scenario happened a couple of weeks ago and it was nothing. If anything gets worse before I see her Thursday I'll call her. 

James woke up today stuffy, with a runny rose so fingers crossed she's not getting a full-blown cold. I think we let her stay out in her freezing cold kiddie pool on Sunday too long. Oops. I hate being afraid of her essentially when she's sick. Instead of staying away from her, I'm just really careful and when she -- without fail -- wants a drink of MY water, I let her and then just get another glass. Of course, I've been doing this even when she's not sick -- you just never know. 

On Thursday I will have my numbers checked again and will meet with the doctor. I expect her to tell me we're starting back up with Herceptin infusions soon and that's about it. I have four more of those, every three weeks, and am then expecting to be told I need 10 infusions of Perjata after that, if the results of a study to be released next month are what my doctor is expecting. Both of these drugs I take because of my HER2 positive status. Herceptin was just approved by the FDA a few years ago and apparently has made a huge difference. The mortality rate and rate of reoccurrence for HER2 positive people have gone way, way down with the use of these drugs. She may also bring up my medicine protocol into the future -- I'm not sure if I will need to start taking my estrogen blocker medicine and/or getting shots to shut down my ovaries soon or if that will wait until after I'm done with infusions, therefore being officially done with cancer treatment. 

By the time you read this, it will be the one year anniversary of my diagnosis. June 14. I remember everything about that day and I think of it often. I had that Tuesday off due to a client cancellation so Daniel decided to take that afternoon off too and suggested we lay in bed and watch a movie -- which we certainly haven't done in many years, since at least before James was born. I will now always associate that movie with that day. I wasn't expecting to get a call about the previous Friday's biopsy results until the next day, but it was definitely on my mind and Daniel knew it. We watched our movie and dozed off.

I left to pick up a few things at Trader Joe's, then was going to pick up Claire. As I was pulling out of the Trader Joe's parking lot and onto Woodward Avenue my phone rang. I picked it up as I always did for a local number, even if I didn't recognize it, because it could be a potential client. Instead it was a doctor from my midwife's office saying she had my test results and was calling because she was the only one in the office that afternoon. 

You picture it like in the movies, where you and your partner are sitting in grommeted leather chairs, hand-in-hand, across from the doctor who is sitting at a large wooden desk covered in files and papers. He or she looks you in the eye and softly says, "You have cancer," then tells you all the details and a plan of action. That is not reality. At least not for anyone I've ever talked to -- and I've talked to a lot of people with cancer int he last year. Instead, a doctor I have never met was on the other end of the line and said, "It did show a cancer." A CANCER. What does that mean? She then proceeded to rattle off the names and numbers of surgeons from whom I could pick and their numbers, saying I should get in right away and they would take it from there. It didn't occur to me to pull over and I wasn't taking in anything she was saying. 

I asked her if my midwife would know this information because I was just going to call her (we have a relationship outside of her being my midwife, therefore I can just call her) and she said yes, but I could also create an account in the patient portal and she would e-mail me the details. Again, my mind was blank. Nothing was sticking. Just as we were getting off the phone, I pulled up to pick up Claire. I smiled and asked her how her days was. She asked if we could stop at the store to pick up a few things she needed for a school project and I said we should take the groceries home first. 

I walked in the door, where Daniel greeted us and started chatting with Claire. I put the perishable groceries away quickly and walked upstairs, where I paced for a few minutes before deciding to text Daniel to please come upstairs. I debated about waiting until after the kids were in bed, but then realized that was stupid and I certainly couldn't keep this in for the next 5 hours. I shared the news with him and after just a couple of minutes we pulled ourselves together. I set to texting and calling my midwife like a crazy person and figuring out how to get into the damn patient portal. She called me back -- having no idea that my results had come back or she would have obviously called me herself. She said she would find out some details and call me back as soon as possible. It was after 5 by the time I got off the phone with my her, so I had to wait until the next day to call the surgeon she recommended, who it turns out we would have to wait a whole week to see.

Daniel left to get James while I sat in bed, Googling and staring at nothing. I tried to eat a sandwich in bed while Daniel fed the girls dinner. Then I put on my big girl pants, gave James a bath and put her to bed. I have a picture of her from that bath smiling so big -- I look at it and wonder what in the world was going through my mind at the time. 

The next morning I went to work, and every morning after that for the rest of the week. That Saturday I catered a dinner party in Birmingham, laughing with the hosts and their guests and sharing pictures of the meal to my Fresh Chef Facebook page like I always try to.  On that gorgeous, sunny Sunday we celebrated Father's Day with sushi in Royal Oak, like we do every year. I smiled and acted like nothing was wrong when I ran into friends in town. We didn't want to share anything with anyone beyond close family until we knew more. I did reach out to a few friends who I knew had gone through various forms of cancer treatment -- that's a big part of why I posted anything to Facebook and share so much here. I wanted people to feel free to reach out to me because it was so, so helpful to me in the beginning and throughout the year -- and they have. Some of them I've still never met and may never meet, but we have each other online and it's been a big help. We also chose not to tell Claire until we had more details and knew the course of action -- she was going to be away for the next week anyway. That was a good call considering it was far worse than we thought, as I sat foolishly hoping it could be taken care of with perhaps a lumpectomy and some radiation. We were so naive and had no idea what was coming our way. I worked on Monday morning, having no idea it would be the last day I would work for at least the next year. 

Why am I relaying all of this? I don't know. It's just been on my mind. I see people come into the chemo room who are clearly there for the first time and I think back to that day when we first walked through after learning what the plan was. I wonder if there's anything I can say --- anything at all that would have truly been a comfort to me back then and I know the answer is no. Although I do remember an older woman, who could probably tell I was a newbie by our expressions and my tears, telling me that everyone in the office had been wonderful and that they would take good care of me. It was sweet. I don't think that sentiment would have the same effect coming from me instead of sweet, grandmotherly figure. 

So here we are. A year later. In some ways it seems like yesterday and also seems like it's been far longer than a year, if that makes any sense. And while I should be doing backflips that the worst is over -- and really, I am so relieved -- I'm not doing backflips. I try to be honest and straightforward in these updates, so I'm going to continue that, again, particularly for others with in cancer treatment who are reading it. I know this has been passed on to many friends of friends who are at various stages of their treatment. I hear it has been helpful and to me it's not helpful to always have a smile on my face and act like everything is OK all the time. It isn't. I mean, I'm OK. But I'm also not OK. Yeah, cancer's a real roller coaster like that. 

As I've approached "the worst is behind you" stage and the one-year anniversary point, I've been having an increasingly tougher time. Maybe it's because I've been doing this for a year and my body and brain are freaking tired. In new ways I didn't know existed. The last few weeks have been rough in that way. I've been so focused on the finish line, which has kept moving. But now that what I thought was the finish is essentially here, I'm realizing there is no finish line. Ever. Now I'm looking at about 10 more months of the aforementioned infusions, and daily pills for 10 years (that sound kind of horrible to take) and monthly shots (until I finally let them remove my ovaries). And spending every day not only worrying that this garbage is going to resurface in another part of my body ANY DAY NOW (and certainly that weird pain I felt in my leg or my back that one day MUST BE CANCER), but obsessing about how I can eat and supplement and meditate and yoga it away. I talk to people all the time who have 5-10-20 years since they were "cancer-free." Then I see a blog or Instagram post or, like this morning, a magazine in the Target checkout telling me Olivia Newton John's breast cancer from 25 years ago is back and in her bones. When it comes back it's considered terminal. You still might live for quite a long time after that, but you will never again be presumed cancer free. 

I made it through this year really feeling okay most days, even when I wasn't feeling okay physically. Having a subdued but hopeful attitude. Having lots of fun when I was up for it. And now it feels like some kind of failure that it's all hitting and I'm having a hard time now. A lot of my friends with cancer seem to be maintaining their positive attitudes and why can I not? I told Daniel I feel like I've been holding my breath for the last year and I just can't anymore. It's just all coming to the surface. And maybe that's the healthy thing to do. Process my emotions and whatnot. And I say all this not looking for comfort or pity or to be told how strong or brave I am. Sometimes it's okay not to be okay and this is just one of those times. 

That being said, there is still a lot of fun and laughter and good things in my house and in my life and those are things I want to focus on creating more than ever. I am not spending all day in bed, even though sometimes that sounds like a good idea. I'm looking forward to a summer of fun and activity and feeling well, as much as I can. Visitors coming here and trips away are planned, I'm finally prepping my garden (albeit a little late in the season) and we have a lot to look forward to. Hopefully I'll be getting back to work in the next couple of months, at least in some way, and starting to rebuild -- my body, my business, my life. Even lifting James can really take it out of me -- time to regain some muscle somehow and build up some stamina before I jump back in full throttle at work, assuming I'm told by my doctor that that's something I can start doing sooner than later. 

I just learned you're not considered "cancer-free" until you are totally done with treatment. If that's true, I've got you in my sights, April 2018. Let the new countdown begin.

Holding Steady

Not a whole lot to report, but getting a lot of people checking in today, so I thought I would post a little update. I rested a lot over the weekend and was grateful for the quiet and ability to rest. 

I spent most of Monday and Tuesday in bed, but did go in for fluids and blood work on Monday. My numbers were expectedly high, a few days after my post-chemo Neulasta injection. Yesterday and today my temperature has been up and down, but hasn't cracked 100. This is exactly what happened last time, so I'm not too worried. Obviously, it's not fun feeling feverish so I've just been laying around watching Netflix until today.

When I went in today my numbers were way down, much like last time, but not in the danger zone yet. My white blood cells were around 5, neutrophils were fine (I forget what they were) and my hemoglobin was low (9.4) but not in the danger zone yet. So, we'll see where everything is on Friday when I go back. I'm hoping everything plateaus over the weekend like it did last time. It's hard not to proceed without caution, considering this was my last chemo, but my immune system is still shot and I'm susceptible to every little thing out there so I'm trying to be careful, especially in public, at James's daycare, etc. I cannot wait to not obsess over germs.  

The wheezing in my lungs hasn't manifested itself into anything. My nose was a teeny stuffy for a couple of days, but now it's fine. That's about it. I'll keep going in for fluids and to get my numbers checked on Friday and Monday then will meet with the doctor and get my numbers checked on the 15th. I suppose the hope is at that point that I'm told I can restart my Herceptin infusions every three weeks and get this show on the road. 

I'm meeting with my plastic surgeon again in a couple of weeks and he said we'll schedule my reconstruction for the first week in October. I may have already reported that, but I don't remember. :) That's the latest. Hopefully I'll have not much to report after I got my numbers checked on Friday!

Last Chemo Done!

All went as we hoped today and I had my last chemo! At least I hope it was. It's strange to have had a "last chemo" last year and then do it again. There was no fanfare, or happy photos or celebration like last time. But, as far as we know, it was the last and that does feel good. A friend tonight texted that my girlfriends and I should gather for a celebratory brunch with mimosas in a few weeks and I like that idea. :) 

My numbers were great (for the situation) -- white blood cells over 3, neutrophils at 1.8. My hemoglobin is still low (just under 10) but creeping up and at the very least holding steady. They kept the chemo at the same dose as last time (60 percent), since I managed to stay out of the hospital and my numbers never dipped into the danger zone. 

My oncologist wants to keep a close eye on me until my regular follow-up appointment in two weeks. I may have done well this last time not only because of the decreased dosage, but also because I had higher numbers having just gotten out of the hospital, where they gave me medicine to get my numbers up. SO, we technically don't know how this one will go. She said this last round can be pretty rough for some. We'll see what that means for me. So, I'll still go in for fluids tomorrow and every Monday, Wednesday and Friday until that follow-up appointment on the 15th, getting bloodwork each time starting next Monday. 

I think that's about it! My doctor heard a slight wheezing in my lower lungs so she wants me to let her know if I get congested or start coughing. My mouth was bothering me for the last couple of days, there's no sign of thrush or any other major ailment and it's actually gotten feels much better tonight than it did even earlier today. 

James will spend the weekend in Ionia again, so I'll be binge-watching one thing or another from Netflix and resting as much as possible while Daniel will likely be hard at work. On that note, better get off to bed. 

Reporting from Home Base

And by "home base" I mean my actual home, not the hospital, which sort of feels like my home at this point! I went in four times this week to get my counts checked (three of those for fluids too). On Monday, my counts were crazy high because I was on day 3 after getting the Neulasta shot -- which I get the day after chemo to help boost my white counts. I had never seen numbers like that, as I have never had my numbers checked on day 3, and was confused -- the nurse had to explain to me why my white blood cell count was 34 (the average person is between 4 and 10). 

The next day, though I wasn't scheduled to come in for testing or fluids, I had a temperature hovering between 99 and 99.9, had the chills and felt pretty lousy. I eventually texted the doctor and she asked me to pop in for blood work. My WBC had dropped to 11 in one day. BUT, that obviously isn't a terrible number still and wasn't totally unexpected, so I came home and rested. The next day I felt more of the same -- still a slightly elevated temp, chills and my stomach was upset. I was nervous. My WBC had dropped to 4 since the day before, but again, not the worst. The nurse told me I might be feeling crummy just because they were dropping. 

The following two days I started to feel a little better. I also "slept in" (those quotes are for anyone who is a parent and knows that 8 or 8:30 a.m. is a true luxury) those days and I know that didn't hurt. When I went in yesterday (Friday) my white count was 1.8. So, that's obviously not great. I officially need to be careful in public, (and let's face it, at home -- I have a toddler in daycare) and am crossing my fingers so hard that my numbers don't drop anymore they might break. 

The office is closed on Monday, so I might go in Tuesday to get blood work. I just want a couple of days to do something about it if my numbers are super low. I don't want to postpone chemo even a week. I don't have faith that my counts will bounce back on their own in a week and I just really need this to be over with. I'm not feeling quite as down about it as I was a week ago, though. I think that is thanks to some sunshine and an an extended stay at home, during which I actually feel pretty decent. 

James got up at 5:45 a.m. today and by 7 a.m. I was zipping around the house cleaning, etc., if that gives you any indication as to how I'm feeling today. Pretty darn good. Obviously I don't want to overdo it, but it feels good to be contributing to the house a little. 

Claire's 14th birthday is today, which is so crazy to me. She was exactly James's age when I met her. Her 4th birthday was the first I had a hand in - a little party at Daniel's old house in Ferndale with some of his family and friends, who I was just getting to know. I remember it vividly and can't believe it's been a decade since. She wore a dress, a crown and sparkly shoes, not unlike the ones James has insisted on wearing for the last three days since we unpacked them from the summer hand-me-downs.

James seems to have turned the corner in not being a total nightmare to take to a  restaurant, which we discovered last night at a nearby Mexican joint and this morning out for breakfast, before heading to the park for a bit. I've been craving a margarita lately so at dinner last night I ordered the cherry limeade off the virgin drinks menu and asked them to salt the rim. Close enough! After we got James in bed, the three of us got to a regular ritual of late -- playing the board game Ticket to Ride, a gift from my mother-in-law. Claire is the master.  I have enjoyed playing it with the knowledge I am unlikely ever to win, but somehow I was able to defeat the master! Sad on her birthday, I know. I'll put a quarter in her therapy jar for that one. 

I hope to have an extremely uneventful and peaceful weekend where we can just enjoy each other and relax. Hopefully a week from now I can say the hardest stuff is behind us and we can start to look forward. 

Number Three Done!

I had my third chemo today -- dragging myself to the finishing line. I know I'm getting close to the end, but the last couple of days have been tough. I'm just so tired of it all. Not that I've never had this feeling before, and it always passes. In a day or two I'll put on my big girl pants and get back to that "Let's do this" mentality. I think I've just been dreading going back to the drawing board of feeling like crap with chemo today after I was finally starting to feel a little better again. 

BUT, here I am. Considering how poorly I did after the second round, the doctor decided to drop the dosage down another 20%. I may have been mistaken about the 5% I thought she said last time. SO this is the lowest it can be and still be considered effective. She said a study out of New York showed it to be equally effective if you stagger the two drugs -- we could have just done the one drug today, the other drug in two weeks, the first drug two weeks after that and the second drug to week after that. That would spread out my chemo by at least an extra month and mentally I just cannot do it right now. I said no. I need this to be over sooner than later. Even if that means I spend more weeks in the hospital. 

So, we did the reduced dosage and we're going to watch my numbers very carefully over the next week. Each time I go in for fluids (Monday, Wednesday, Friday) she's also going to do bloodwork so she can keep an eye on all my numbers and see how they're trending. If they drop a lot between Monday and Wednesday and, let's say I get a fever on Thursday again, she'll just admit me to the hospital without me having to go in the ER, etc. OR maybe the reduced dosage will be enough to keep my numbers from dropping too far. We'll see. 

Today my white blood cells were at 5.2, so still in a healthy range, but last time I had chemo they were at 9 and dropped to .9 a week later, just to give some perspective. So, who knows what will happen. My neutrophils are also in a healthy range (3.02) and my hemoglobin is lower than normal (10.8) but not too low. They'll be keeping a closer eye on that than they were last time. Looking back, my hemoglobin was only 8 something last time I had chemo, so it was already pretty low. I don't know if they weren't concerned or they were just so focused on the white blood cells, etc. that it didn't register. I don't know if any of these numbers make sense to most of you, but I know they do to a few of you, so I guess those are for you few. 

I got some good news today. A couple of weeks ago I started to have mild abdomen pain and mentioned it to the doctor the last time I was in the hospital, but he wasn't concerned. Monday when I got home it was hurting me a bit and when I felt around, I felt a little lump in there. Almost like a long bead somewhere under the skin. I called the doctor the next day and at first they said they would just see me today, then called back five minutes later. Basically, "If it CAN happen, it happens to you, so let's get it checked out." I didn't mention it to anyone until I knew what it was. Honestly, I was hoping it was a hernia (I didn't think 'nothing' was an option). Long story long, I had an ultrasound this morning and it's just a little hematoma -- a collection of blood likely due to the shots I consistently was getting in my belly in the hospital for two of the last three weeks. At some point, someone must have hit a blood vessel. It should dissipate easily over time. Whew. 

That's about it. My mom's coming to take James for the weekend which will be a huge help. I never rest quite as much as I could or would when she's here and Daniel's got a bunch of work to do, so it's going to save us for sure. Here's hoping the reduced dosage helps me feel not quite as crummy and we'll just have to see what happens with my numbers. I'm going to go in for fluids tomorrow, so that should help me get through the weekend a bit.

See you on the other side -- hopefully from the comfort of home, as much as I really do love all of my nurses from 8 South. :) 

Home!

I'm writing this from the comfort of my couch, snuggled under my favorite blanket in my comfy pajamas instead of scrubs and a giant hospital gown. My numbers were all up (not quite as high as last time, but up plenty) and my hemoglobin never dipped -- in fact it went up -- so I didn't need another blood transfusion either. 

They were set to send me home when I got really nauseous and spiked a bit of a fever. Nothing major and, because my numbers are up they ultimately decided to go ahead and send me home. In the couple of hours I've been home I've been up and about more than I have in days, obviously, without nurses and kitchens and aides to wait on me. I've felt a little woozy and lightheaded a couple of times, but as long as I'm siting I feel pretty good. So, I think I'll be doing a lot of sitting in the next couple of days and will head to chemo on Thursday. 

I'm fully anticipating this happening again. I mean, I'll remain hopeful my numbers stay up, but I'm not banking on it. I've just got my eyes on June 10. That's 9 days after my last chemo and seems like a good target date to hopefully start feeling better. So, whatever it takes to get me there is fine. 

That's about it! Now I'm off to relax with Daniel a bit before bed. It sure is nice to be home. 

Just Checking In

Still posted up here in the hospital. Nothing of note is going on, but lots of people are checking in so I thought an update was in order! 

I'm still getting antibiotics, shots for my white count, etc. My white count is up to .9, but unfortunately, my neutrophils have dropped to 0 (or "too low to be counted," to be more accurate.) My red/hemoglobin count, while it was up yesterday after the transfusion, has dropped again too and they are predicting another transfusion tomorrow. 

I'm also getting a CT scan in the morning. While I tested negative for cdiff, they want to make sure there isn't another type of intestinal infection or inflammation going on. My potassium is low and the things that usually cause that are not happening, so that's one more reason they're checking for an intestinal infection. 

My oncologist came by this morning and said we'll see where I'm at on Monday and go from there. I told her I was willing to do whatever it takes in order to not delay chemo -- I just need to get this over with and don't want anything postponed. If that means being hospitalized for a few days after each chemo, then fine. Let's get me to mid-June so we can move on. 

The nurses are taking very good care of me, as usual. I was interrupted constantly Thursday night because of my transfusion but got about 6 hours of sleep Friday night and a long nap this afternoon, so that was good. Once 6:30 a.m. rolls around, I generally give up on sleep because the day has begun and the flood of various doctors and nurses coming in and out has begun. 

James is staying at my sister's tonight so Daniel could have a little break, but he'll be bringing the girls by tomorrow to visit. I told James about the special cookie they told me I can order tomorrow so she's pretty pumped about that. I'll have to see if I can finagle 2. :)

Happy Mother's Day to all of the amazing moms out there, including the ones in my life. And sorry your cards will be late this year! ;) 

Back in the Clink

Well, things have only gone a little downhill since last night. Nothing major, just more of the same. I had a tough time sleeping last night and was in bed until mid-morning. I tried to make myself some breakfast, but had to abort the mission to lay down as I was finishing up. I just really felt nauseous and lightheaded. 

Daniel brought my food up to me when he got home and kept waiting on me throughout the day -- I just had to stay in bed. I had the chills so I kept checking my temperature and when it hit 101.1 I called the doctor, even though I knew exactly what she would say. Essentially, "Like I said yesterday, you need to go to the ER if you have a fever, dummy." Well, not exactly, but that's how it felt. 

I packed a bag and got here about 5 p.m. I just barely had an elevated temperature when I got here, even though I felt super feverish, with the chills (and still do). After a few hours of tests and being poked and prodded in the ER, they admitted me. My numbers are even lower than yesterday -- .3 white blood cells and .1 for neutrophils. My potassium was low and the biggest new thing -- more than half my blood is gone. Normal count is 12 and I'm at 5.4. I guess sometimes with chemo it causes your bone marrow not produce enough blood and that's why my counts are low. Apparently it's a bit more intricate of a process to get a blood transfusion when you're in chemo so they have to do a bunch of stuff before they can give me the blood. I'm set to be starting soon (it's 11:30 p.m. now) and it should take several hours. They have to take my vitals often throughout the process so I'm not banking on getting a whole lot of sleep. 

They've got me started on the IV and oral antibiotics again and everyone's on cdiff watch. All other tests so far (chest x-ray, urine, etc.) have been negative for infection. So, more of the same. My nurse tonight is the same as the last night I was here last week. Fingers crossed I get one of my two fave day nurses in the morning. (But really, everyone's great, so whatever). I think it's actually Nurse Appreciation Week. I wish I had a big box of treats for the amazing nurses and nursing assistants who take care of me here on 8 South and at chemo. Maybe later. 

That's it. I'm just a few doors down from where I was last week in an identical room (with a different tree out the window -- no balloon stuck in it. Ha.). I really hate when I'm not home when James gets home, expecting to see me, but we FaceTimed tonight and she took it in stride, as usual. I'm assuming I'll at least be here through the weekend. I expect to see my oncologist at some point in the next couple of days (in addition to the usual suspects who I always see at the hospital from her team). 

That's about it. I'll just be here hanging out, hopefully with very little excitement to report anytime soon. :)

Well, crap.

It's been almost a week since chemo and I've been taking it really easy...mostly. I spent most of the weekend laying low and sleeping, feeling the worst on Saturday for sure. Laying down and sipping ginger ale seem to be the magic elixir. I slept most of Sunday and Monday, and Tuesday was feeling pretty good and wanting to chip in around here. I took James to daycare, stopped at the grocery store and cleaned up around the house a little -- which totally wiped me out. I rested all afternoon and got up to make dinner for the kids.

I was feeling pretty lightheaded and wonky so I was relieved when Daniel said he would go get James. Throughout making dinner I had to sit down several times and eventually, basically passed out. The room went black and I stumbled over to the couch, where I stayed until Daniel and the girls got home. Fortunately, dinner was ready, so I ate a little with the family and went to bed. We debated whether I should have called the doctor, but I didn't have a fever or anything and was sure she would err on the side of caution and send me to the hospital, where I didn't want to go. As I was set to see her today, I figured I could just rest and check in today when I went in for fluids. (Get off my back. I was fine! Ha.) 

I ate a big breakfast (in case not eating enough was part of the problem) and headed in my for my fluids and blood work. Unfortunately, my numbers have TANKED. My white blood cell count is .9 and by neutrophils are .58 -- not good. I am actually shocked that they dropped from 9 to .9 -- that's insane! As I'm not having any symptoms like last time (no fevers, chills, etc.) and my numbers are not as bad as last time, I was sent home with precautions and hope. I'm to continue taking antibiotics, aimed at keeping cdiff at bay, am to follow a neutropenic diet (no raw fruits or vegetables due to the risk of salmonella, etc.), avoid sick people, wear masks when in public, don't share towels, toothpaste, etc., and am to go to the hospital at the first sign of cdiff or an infection -- chills, fever higher than 100.4, cough, sore throat, sores, skin redness or swelling, mouth sores. So, hopefully none of those things will happen. 

I'll continue going in for fluids every couple of days and I guess I just have to hope my numbers are high enough for me to have chemo next week. I just want to get this over with and don't want any delays. Honestly, being hospitalized would be worth it to get that awful daily shot in the stomach to bring my numbers up. BUT, they told me there's nothing I can do in the meantime to make it better, and nothing I could have done to prevent it, for that matter. Not rest, not eat anything in particular, not take anything. I'm going to see if they will do blood work again on Monday when I go in so we can do something if my numbers are even lower. 

Re: the lightheadedness, my nurse and the PA said to increase my salt and electrolyte intake and be careful when going from laying to sitting, sitting to standing, etc. Honestly, I feel pretty rough anytime I'm standing. Very lightheaded and nauseous. So, as much as I'm eager to take the load off of Daniel when I'm able and to live a normal-ish life when I can, my body is clearly telling me to stay in bed or on the couch. I just have to keep my head down and get to June 1 -- three weeks and counting! 

I just posted this to Facebook, but in case you're not on there, I received a sweatshirt today, the proceeds of which go toward a really great cause. And it's a really wonderful, soft sweatshirt. I've recently fallen in love with the podcast Terrible, Thanks for Asking, hosted by Nora McInerny, whose book "It's OK to Laugh (Crying is Cool Too)" I'm also reading. She started a foundation called Still Kickin, based on an old thrift store T-shirt her husband was wearing when he had the seizure that led to the discovery of his brain tumor. He died three years later, within weeks of Nora's father and within weeks of her miscarriage (while she was caring for their toddler). Proceeds help out one of their "heroes" each month. They have all kinds of shirts and bags and water bottles and you name it, if you know someone who's Still Kickin and could use a cozy sweatshirt or other nice surprise.  

Two years ago today we said goodbye to our sister-in-law Jessica, on Mother's Day, May 10, 2015. In the years before her death from Cystic Fibrosis, as we raised funds for the lung transplant that never was, and in the weeks after her death, I thought I came to understand what amazingly loving and supportive people we had in our lives. Little did I know, that was just an inkling of what I was to experience this past year. 

It's hard to believe I've been -- WE'VE been -- dealing with this for a year now. It was Mother's Day last year, May 8, when I looked in the mirror and saw something was off after a couple of weeks of having pain. And it was two days later --  one year ago today -- that I finally texted my midwife that "something was going on." Some days I look back on pictures from last Mother's Day -- like the one of me and James at the top of the Go Fund Me page, and wish I could go back to that innocent time. Soak in the simplicity of life that I took for granted. I thought life was chaotic and busy with work and kids and, you know the drill. And it was. In some ways life now is at a slower pace, but it's certainly not simpler or easier. I'm still discovering and learning how this whole thing is going to affect me, my future, our family. One thing that has never been more evident is how fortunate I am to have such a strong support system, right here in my house and extending to everyone reading this right now. I guess I say it a lot, but thank you all for everything from your well-wishes to dinners to donations to helping to care for James. I wouldn't be still kickin' without you. 

Half-Way There!

I'm done with number two -- I miss having a little break of feeling good between infusions, but, honestly, who cares -- let's just get through these and get it over with. Here I am, two weeks in and I'm already half-way done. I love it. Well, you know what I mean. 

We got in really fast around 1:30 today and were out of there around 4 o'clock. I love how fast it is this time around, and nice and quiet, hardly anyone in the chemo room. My numbers aren't QUITE as stellar as they were two days ago when I was still getting those daily Granix shots, but my white blood cell count was still 9-point-something -- at the high end of the "normal" range that any of you would have. Hopefully with chemo dosage reduced by 20 percent and the Neulasta injection tomorrow, they won't dip into the danger zone anytime soon. My doctor wants me to come back in for blood work again in a week (normally only done after the first one) to see how I do with round two. If it's still wiping out my counts, she can drop the chemo 5 more percent, which is the max they will drop it and still consider it effective. Let's hope I can stay out of the hospital in the meantime. However, if the same thing happens again I'll happily (well...) go back for a couple of days to keep me safe, cdiff- and other infection-free, and boost my counts. 

I felt like it made a huge difference after my last chemo in October when I went in for fluids for a few days to help me out so I would be well enough to travel to Florida. I hate the idea of taking a chair for fluids, leaving someone waiting to get their chemo, which did happen one day back then. BUT, I just want to feel good, so I asked if I could come in the day after chemo each time for fluids. Jen the PA's response was essentially, "You've been through enough -- why don't you come in Monday, Wednesday and Friday each week until you're done." OK! The nurses assured me it would be fine -- I can sit on the floor if I need to. :) 

As much as I'm sick of that place, I think it will be a huge help in my recovery and in general how I feel to get one bag of fluids every couple of days. I drink as much as I can (some days are better than others and in general I drink a lot of water anyway), but it's never enough when it comes to chemo. So, I'll start that tomorrow and go back three times next week. I'm trying not to get my hopes up too high, but fingers crossed it helps make for some smooth sailing from here on out.

My hair, which I continue to get both strange looks and a ton of compliments on, should start falling out any day now. Last time, it started coming out in clumps on day 15, which is now (by the time you read this). I kept checking today (couldn't help it) and it's still stuck in there tight, so we'll see if day 15 is the magic number again this time. Tonight at bedtime James ran her fingers through my hair and said, "I like your pretty pink hair, mama. Will you keep it?" She's never seemed to much care what's on my head, but somehow I birthed a girly, pink-and-purple loving little girl, so of course she likes it. I explained to her that sometime in the next few days we would be cutting it off again, which didn't much phase her. I didn't have the heart to tell her it probably will never be this color again. :) 

Mom's busy helping my sister move so James will be here this weekend. Hopefully the rain and cold will let up at some point so Daniel can get her out of the house or maybe they can walk the mall or something while I'm sleeping it off. That's about it. Now just to hydrate, rest, hopefully watch some movies and come out the other side in a few days. Thanks for all the well-wishes and texts today!

Here We Go Again

Sorry for the lack of update, but I've been a little busier since Monday night. Finding no source for my (very mild) fevers and with my numbers skyrocketing, they saw no reason to keep me at the hospital any longer. Daniel and James came to pick me up around 5 on Monday and, fortunately for James, it took a little while before I was released -- she had plenty of time to play in the bed before we left. 

They sent me home with antibiotics and instructions to contact my doctor if my fever got above 100.5. My temperature was 99.8 when I left the hospital, disappeared by bedtime and hasn't come back. The last time they did bloodwork before I left the hospital my numbers were crazy high. Are you ready for this? My white blood cells were 14.6 and my neutrophils were 11.4! I guess all those shots in the belly were worth it. 

I felt pretty good today but still tried not to do too much. I had a quick appointment with my plastic surgeon and didn't do much else. I took James to her sitter this morning and when I said I had to go so I wouldn't be late for the doctor she was clinging onto me, which isn't normal for her. I finally realized she was worried I was going back to the hospital. I eventually convinced her enough for her to let me go, her chin quivering. I'm glad she's such a go-with-the-flow kid and does just fine when I'm gone, but I forget how odd and confusing this must be for her. This was, I think, the fourth time I've unexpectedly not come home for days on end. Though I shouldn't, I promised I would be there to pick her up and, fortunately, I was.

Chemo #2 tomorrow. With my numbers being high and my chemo being reduced by 20% I'm hoping I come out alright. I've been hydrating like crazy today so I hope that helps. That's about it! See you on the other side. 

Still in the Pokey

It's Sunday night and I'm still resting (pretty) comfortably at Beaumont. I had my post-walk visitors yesterday, which was very fun. James got to see where I stay and thinks this place is a party. Aunt Sarah bought her some yogurt and grapes, she figured out the buttons for the TV, lights and how to make the bed go up and down in no time. PLUS we had birthday cake for Gigi, whose birthday is today (Monday, by the time you get this). So, she thinks the hospital is essentially a party, at one point saying, "I like this place." Ha. 

They picked me up some salads from Papa Joe's downstairs and friends brought me dinner last night and tonight so it's been nice to get some good food into me.

The shot they are giving me to increase my counts gave me some pretty intense body/bone aches starting when I woke up Saturday morning and it took us until mid-afternoon to connect it. So they were scanning me for blood clots etc. until we figured it out. Once we made the connection I took some Claritin and it took about 24 hours to kick in. When they first gave me the shot Thursday night I asked if I should take a Claritin, which I take after chemo for this very reason and the nurse just said that this drug isn't as bad as the Neulasta. Then I was fine on Friday so that's why it took us a bit to connect it. I wish I had been a little pushier or something and gotten a Claritin and prevented it all, but oh well. A few nurses learned something and now I know. 

Other than that and a horrible headache I was fine yesterday and everyone was hopeful that if my numbers continued to climb I could go home today. Then I woke up today with a fever and really intense nausea. And, though my body aches were gone my super intense headache was still there. I had been hoping it would go away with the body aches. The fever came down in a couple of hours and the headache has improved. When the doctor came in the afternoon he was frustrated that the nurses hadn't called him when I had a fever. He said if I have some kind of virus, during a fever is when the bacteria is the most active and that is the best time to get some blood to test. SO, he said if I get a fever they should take blood to test, and if I didn't have any fevers and my numbers went up, I should be able to go home tomorrow. 

THEN a couple of hours later I spiked another fever. Daniel and the girls came to visit again and while they were here I started feeling a little worse. When they left, the nurse took my temp and it was back at 101. So, they took some blood and we'll see if they can identify what might be trying to take me down. It came down to about 100 on its own, last we checked. Hopefully it doesn't go back up anymore. 

The good new is, last I knew, my white blood cells were up. The nurse told me they went down to 0.1 on Friday, were 0.6 on Saturday and were up to 1.7 today. My neutrophils were .4 or 5 yesterday and were up to 0.9 today. The doctor told me yesterday he wanted them consistently at .5 to go home, but now that I'm having fevers he wants them consistently at 1.0 or higher. 

If they don't find anything and these fevers stop or stay easily contained I think they might send me home tomorrow, but we'll see. As much as OF COURSE I'd rather be home with my family and in my own bed, it is nice to be able to call a nurse and get help for what's ailing me -- special meds for my headache, someone watching my fevers and something straight into the IV when I get nauseous. It definitely spooked me to feel so crummy and have such abysmal numbers Thursday so I feel safe here while I don't feel well. I'll hopefully learn my numbers are up, I have no specific viruses or infections, the fevers will stay at bay and can go home to relax for a few days before chemo on Thursday.

That's about it! I understand I'm continuing to miss some pretty crummy weather out there. Maybe my body's just waiting for sunshine in the forecast to get me out of here. :)

I'm Baaaa-aaaack

I was just really missing the gang on 8 South so I checked in to Beaumont Hospital for a few days. OK, that's not true and I haven't had one nurse that I had last year during my multiple stays. But I AM back in room 8489 and the balloon that was stuck in the tree outside my window in October is still there. 

I suppose I should backtrack. By Monday afternoon I really felt quite a bit better, chemo-wise. Then Wednesday afternoon I just started feeling...off. I can't explain it. Lightheaded, achy. Not how chemo makes you feel. It got worse on Thursday and included chills. I just hoped I wasn't getting sick. I was already scheduled to go in for bloodwork, as I did a week after my first chemo last summer. The results were exactly why they do that. 

They took some blood and took my vitals. My blood pressure was a little low and I didn't have a fever. While she was taking my temperature, I actually thought in my head, "Please have a fever." I don't know that I can adequately explain why, I just wanted there to be some reason for why I was feeling so crummy or proof that I was feeling crummy and for them to have advice. But, I had no fever. I asked if I could wait so I could see my numbers and took a seat in the hall. 

Minutes later, my oncologist's PA saw me in the hall and said, "I'm so glad you're still here. Come here. How are you feeling? Come sit in the doctor's office." (Where I've never been). She informed me that my white blood count was 0.2 and my neutrophils (my ability to fight infection) were 0.0. To give some perspective, a week earlier my white blood cell count was 2.7, which is low. When they postponed my final chemo last fall, my wbc count was 0.7. 

SO, I was basically walking around begging for anything to infect me, having no ability to fight it off. They were surprised I didn't actually have a fever and said, "Well, it's coming." They wanted to immediately admit me to the hospital and said I would be out in 24-48 hours. They let me run home to pack a bag real quick then I went right to the hospital, where they were waiting for me. 

Within two hours my fever was up, but came down pretty fast with Tylenol and hasn't returned. They also started me on two IV antibiotics and one oral antibiotic. In addition to being susceptible to everything in general, they're most concerned with the cdiff returning. It is still likely present in my body -- as it is in many healthy people -- but is an aggressive little bacteria likely to take over when my body doesn't have the ability to fight it off. CDiff can be serious -- even fatal from what I've been told -- so that's why they are ultra paranoid about it and started me on the heavy antibiotics despite having zero signs of it. 

I started having what seemed to be an allergic reaction after I received the two IV antibiotics.  At first they thought I was allergic to the first one and now it seems more likely that it was just a side effect of the other antibiotic, which tends to release histamines. Benadryl took care of it and knocked me out. Tonight I had that second antibiotic again and it did not have the same effect, so who knows. 

My oncologist came by this morning (Friday) and said she wants me to stay until at least Sunday or Monday, which means unfortunately I can't do the Shades of Pink walk tomorrow morning. My family is still going and I'll be there in spirit. Hopefully some kind person will take a group photo of them. The weather is supposed to be pretty crummy tomorrow, so I have to hand it to them for still being willing to go and do it despite my absence. They'll be coming to visit me after. I don't often have visitors so that will be nice. Because of the cdiff they advised against James ever coming so she's never visited me here. I'm glad she'll get to see where I'm at instead of just thinking I'm away somewhere. I told her she could push the buttons on my bed that make it go up and down, which she seemed pretty pumped about. I'm already regretting that and am anticipating going on quite a ride the entire time she's here. 

Anyway, they are constantly checking me and swabbing me to make sure I don't have any infections of any kind because, if something does come up, apparently it can get bad quickly. The flu swab was negative, urine tests were all negative and tonight they took blood to make sure I have no blood infections or infections in my port. And, again, still no sign of Cdiff. I've become pretty congested but other than that, nothing is going on. 

Oh, they're also giving me shots in the belly of something that's supposed to help push my white blood cells up. I'm hoping the bloodwork tomorrow will show some improvement there. Obviously my body wasn't quite ready to handle this round of chemo. My doctor said, assuming my counts are up enough to proceed with next week's chemo, she's going to drop the dosage by 20 percent. My guess is they'll be keeping a close eye on my counts from now on. 

There aren't a lot of great vegetarian choices on the hospital menu, but it's still been nice to order whatever I want. Any time I've been in here I've been in such rough shape digestively that I could barely eat -- and didn't want to anyway. I'm thinking one of my visitors can at least pick me up a decent salad or something tomorrow on their way here. :) 

That's about it. I was really hoping to stay out of this place this time around, but it seems as though it's the safest place for me. So, I'll keeping doing what they tell me and hope for the best. I've got a computer, I'm in the middle of a good book and the Food Network has programming almost 24 hours a day so I'm pretty sufficiently entertained. Hope to report from home with good news soon!

Coming Out the Other Side

It's Monday afternoon and I'm feeling relatively normal. (I mean, what's normal anyway, right?) I had a pretty sleepy weekend. I was still pretty slow-moving yesterday and today I've had a little more energy. My biggest gripe is that my vision is a bit off. It was with my last regimen too, but not this much and not this fast. 

A friend who just got done with this protocol said she didn't drive the whole time she was on it, as her vision was pretty bad by her second infusion. I'm really hoping that's not the case with me, as I'm four days in, the sun is out and I'm already feeling like a bit of a caged animal. If I really focus on something and blink, I'm OK, but reading/typing or moving my eyes everything is a bit blurry, as if my prescription is a bit off. 

I'm not particularly hungry, but I'm also not particularly nauseous, so that's good. I mostly just feel spacey -- and I blame a lot of that on the vision thing. That's about it. I'm hoping to have a bit more energy in the next couple of days. All in all, if this is the worst of it, I can do this. One down, three to go. 

Looking forward to the Shades of Pink walk on Saturday. I'm really hoping that 80% chance of rain turns around... Fingers crossed. Thanks for all of the texts, e-mails and well wishes. I'm rounding the corner and hopeful the next three will be more of the same. 

Hanging in There

It's Saturday morning and so far, so good. I'm a little out of it, to be expected, so hopefully this will all make sense. :) Things seem to have hit me much faster this time around. Normally the steroids keep me feeling pretty darn normal until Saturday night/Sunday morning, but that is not the case this time I guess. 

Because administering the chemo will only take 2 hours this time, instead of the 4-5 as before so now I go in the afternoon, so I can go to acupuncture first (which doesn't open until noon). Acupuncture first is said to help keep nausea to a minimum. So, I had acupuncture first and then we headed across the hall to the doctor's office at 1. This was the longest wait we've ever had -- I don't know if it's a downfall of going in the afternoon or if they were having an off day or what, but we didn't even get in to see the doctor until close to 2:30, which was kind of a drag. 

The good news first, Herceptin, which is said to be quite hard on the heart (but then tends to bounce back when you're finished) has had absolutely zero effect on my heart function. I'd like to think the supplements my naturopath is having me take for heart function helped with that. 

My white blood cells have dipped again for some reason and my neutrophils are not as high as they would like, but nothing so low to make them not proceed. I'm not sure how or why they would have dipped in the last few weeks, but hopefully they don't dip too much more too fast. I guess we just have to wait and see and nope the Neulasta they gave me (the little pack that sticks to my abdomen and is supposed to help keep my white blood cells up) does its job. 

We finally got settled back in the cushy new chemo chairs, then they almost administered Herceptin, which CANNOT be taken with my current chemo drugs. Fortunately I noticed and, as the nurse went to find out what was going on my doctor had noticed the mistake and was heading back to the chemo room, meeting her in the hallway. After a bit of confusion, everything was set straight and we got started. My doctor also later called me on the way home to apologize and assure me everything was straightened out in the computer and that it wouldn't happen again. 

I don't get any Benadryl this time which is good. It made me sooooo out of it for hours. Just two anti-nausea drugs, the Cytoxin, then they push the Adriamyacin ("The Red Devil") with a syringe. Which is somehow more ominous or something to watch. We were out of there about two hours after the IVs started, in time for Daniel to grab J from daycare and me to head off to the pharmacy for my steroids and anti-nausea meds. They're also having me take a low dose of antibiotics to help prevent me from getting C-Diff again, which I'm not thrilled about, but I'd be less thrilled about getting C-Diff again. I'm apparently to be on high alert for this as it's got a high incidence of recurring with more chemo, so I am to call the second there's any sign of it and to get tested immediately. 

They warned me the Adria would make my urine discolored but hopefully not for more than two days. I was surprised to see it only one hour later. By the time I was putting J to bed at 8 p.m. I started feeling really weird and sweaty and nauseous. I was shocked to be feeling the effects so quickly. 

I've essentially been sleeping since then, while Daniel mans every other aspect of our lives, in addition to working. James is at the gym with him now (they have a play room) and I'm going to attempt to fold a load of laundry. I'm trying to drink as much as possible as hydration is certainly the most important thing here. I'm not horribly nauseous, but I'm not hungry either. I've definitely had to force myself to eat and nothing really sounds good. Although things hit me faster this time, I'm still worried the worst is yet to come, so I'm doing what I can to eat and drink now. We'll see. 

Just thought I'd get this out now, since I'm having a lot of people checking in, asking how I'm doing. Looks like some good weather is on it's way, so I'm looking forward to coming out the other side.