Channeling Bob Wiley


(I went back and read this after I wrote it, and I pretty much could have erased the entire thing and just wrote “<insert whining here>”, but I’m keeping it anyway. If you’re reading this, I will assume you care how I feel, and well, this is it this week.)

This AC cycle has been both easier and tougher than the last. Physically, WAY easier. I got yet another anti-nausea medication to use, and it helped immensely. I was even able to go out to dinner with my family only a few days after chemo. Compared to the first 2 times, when I wasn’t even able to be out of bed and awake at that time, night and day difference. That’s not to say that I have felt normal, as I most definitely have not. The fatigue/decreased stamina is real. Even when I have otherwise felt somewhat ok, a quick trip to the grocery store, or sometimes even taking a shower, wipes me out. Next to the nausea, the taste bud changes have been one of the biggest challenges. Depending on the timing, everything tastes on a sliding scale of “not right” to “disgusting”. The worst part about this is trying to stay hydrated, as that is incredibly important when going through treatment. It helps flush the drugs out of my system quicker, which helps me feel better faster, and helps minimize the chances of the drugs doing damage to my kidneys and other organs while they are in there working their magic. While everything tastes off, for some reason, I’ve had a tougher time finding drinks I can tolerate than I have food I can eat. Water is the absolute worst, which sucks. You don’t know how nice it is to drink an icy glass of water  until it tastes like metallic garbage.

So what’s been worse about this cycle? The psychological side of things. While staying in the moment has never been a strong suit of mine, it’s next level challenging these days. Some of the misconceptions I had about breast cancer prior to my up close and personal experience with it, were that once you were treated for it, you A) are able to get an “all clear” and go about your business, B) if you GOT that “all clear”, you only had to worry about getting a brand new breast cancer, and C) if you opted for the total mastectomy, you COULDN’T get a brand new breast cancer. All of these are false. Even with a mastectomy, SOME amount breast tissue is always going to be left behind, and it only takes a tiny bit to grow a new tumor. Your chances are smaller the more you remove, which is why I still opted to go this route, but they aren’t gone. As far as being able to ring that victory bell at the end of treatment, it’s complicated. I asked my oncologist at the last appointment how we would know that the cancer is gone. Would I get a PET scan at the end of treatment or at periodic intervals to monitor for recurrence or stubborn cells left behind? Nope. Running scans has an inherent risk, and they haven’t found doing so to have a significant survival benefit. (There’s that pesky “survival rate” phrase again.) Basically, what this means, is that no matter what your stage of cancer (1, 2, or 3), you can skip over all the others and go right to stage 4, which is terminal, at any time. What stage 4 means is that ANY breast cancer cells have dislodged from the breast and taken up a cozy home elsewhere in the body. Which means you can have a tumor in your bones, lungs, liver, etc, and it’s still considered breast cancer because the cells are breast cells. To make myself chuckle, I picture a tiny boob being grown in a liver, but then I realize that would mean very bad things and I stop chuckling. At that point, you are no longer considered curable. There are various treatments you can receive to extend your life, but in most cases, the number of years we are talking about at that point is frighteningly low and I won’t even say out loud. If this happens, it doesn’t really make a significant difference in your life expectancy if they find out earlier rather than later, so they don’t run scans just to check. They only run scans if you are having symptoms that are concerning for metastasis, such as trouble breathing, pain somewhere, etc. This is terrible news for someone like me who needs to know all the things all the time, and also has a history of back pain, and also has a history of anxiety. It’s the perfect storm for me to live in a tornado of anxiety for the rest of my days over every little twinge and possibility. At the end of treatment, if you are having no concerning symptoms, they can assume the treatment worked and you are “NED” which means “no evidence of disease”. There’s no EVIDENCE that you still have cancer, but it’s not an absolute. Which, frankly, scares the living shit out of me. I want absolutes in this business, not assumptions.

The last few days, I have been having fairly significant pain in my lower back and hips. In all likelihood, this is due to a number of factors. I’ve had intermittent issues with lower back pain since high school. Since Quentin was born, it’s been less intermittent and more chronic. I’ve done physical therapy multiple times for it, and it waxes and wanes in severity, but it pretty much always there to some extent. Second, because of the aforementioned fatigue, I’ve spent the last week mostly lying down, which is not great on the back/hips. And lastly, part of the chemo ride is getting an injection the day after treatment of a drug called Neulasta. This is to boost my white blood cells, so that I can continue to receive the chemo the next time around. This is done by causing my bone marrow to go into overdrive producing these cells, and that causes pain in my bones, particularly the largest bones in my body. None of these factors have anything to do with metastasis, but of course that’s where my head goes because it’s a terribly frightening prospect.

In addition, I have been extraordinarily blessed by coworkers that care about me, and have donated their own leave hours to me in order to be able to be off work since early January to recover from surgery and get through this “tougher” chemo regimen. However, I found out on Friday that I previously misunderstood the HR policy on donated leave, and while I will be able to use those hours upon my return to work if I need to be off for treatment/recovery/sick time, I cannot use them now. Because I am currently on short term disability, I get 67% of my pay, which, despite my current complaining, I really am grateful for. The situation could be so much worse. But that means that we are getting significantly less on my paychecks, and that hurts in a very real way. Luckily, we do have our tax refund, so we will survive without having to sell off organs, but it’s not fun. Allow me to stamp my feet and get pissy about the fact that not only do I have cancer, but it’s also taken from me every drop of my leave time from work when I return, a significant amount of money in lost wages and medical bills, and any ability we had to travel at all this summer. After all this, don’t we especially deserve to lie on a beach for a week? I think so. <insert pouting face here> I am currently scheduled to go back to work on April 17th. This allows me to finish the AC chemo and get in one week of the Taxol chemo before heading back. The majority of people have an easier time with the weekly Taxol, and after this financial realization, I really hope I fall into that majority, because there’s no way I can continue to stay home for those 12 weeks.

All of this brings me back to the image at the start of this post from What About Bob. Baby steps. I need to focus on baby steps. I need to find a way to focus on the current thing, and not project to the next thing, because I won’t make it through this if I do. Currently that means not thinking about the what ifs regarding how I will handle the rest of treatment, and longer term, finding a way to continue with the rest of life without worrying about cancer returning to claim me. It’s a big job, and one that I’m finding most younger survivors struggle with. How do you not think about such a thing? Right now I don’t have the answer to that. My rational brain can say, why invest energy in worrying about something that very well may never happen? Hasn’t cancer taken enough from me? But my anxious brain, that I’ve lived with since birth, says, go ahead and worry about that. This week I plan to attend a support group for young women with breast cancer, and maybe I’ll be able to find some peace there. Fingers crossed.

Coming up for air

Hi all. This second round of AC hasn’t been as kind to me. I only started feeling back to myself yesterday, and can expect my third round on Monday. :/ Part of the battle I may have done to myself, as I wasn’t very good this time about self care. One of the things that is very important to do each time is drink a LOT of fluids, which is very tough for me a) naturally, b) when I feel nauseous, and c) when taste buds are affected and many beverages taste disgusting. The other thing I wasn’t great about was using the mouthwash I was recommended religiously, and thus ended up with a thrush infection in my mouth, further complicating things. This time, I will stock up on fluids I think I can tolerate and force em down even if I don’t feel like it. I also got a better anti-nausea med a few days in last time which helped significantly, if only in that it knocked me out so I could sleep well and fast forward time a bit. I know the effects of this are also said to be cumulative over the course, so fingers crossed this time isn’t a beast. Depression was a big part of the battle this time for me, and I didn’t leave the bed much that first week at all. Once I physically started to feel better, the darkness started to lift a little, and I’ve gotten out the past few days a bit.

In better news, we had a great time in Chicago last weekend. Hamilton was outstanding, and we had a fun time at the Field Museum. Quentin loved seeing the Egypt exhibit, and a special exhibit they have currently about soil and insects, and what it would be like if you were shrunk down to the size of a bug. He also takes after me and enjoyed the gem hall, which I always loved as a kid. So many sparkly things!


Coming back home was a bummer. Sunday morning I woke up to my hair starting to fall….so when we got back, we buzzed it short that night after putting Q to bed. Throughout the week it started getting patchy, so a few nights ago Sean took razor to scalp and now I am truly bald. It feels super weird, and like this completely foreign part of my body when I touch it. It’s also completely startling any time I pass a mirror and am not thinking about it. Q has done well though, much better than anticipated when we first warned him this would happen. Kids are adaptable, thank god. I have a feeling once it gets hot out, I’ll start rocking the bald look, but for now, it will be kept under wraps except for this glimpse. 🙂