Tuesday, December 1, 2015

Another chapter of Lucky/Unlucky

I haven’t written on this blog in such a long time.  I’m not sure why that is. The only thing I can think of is that I am in a neutral, sort of no-man’s-land with regard to the cancer.  I am in between scans and just riding the wave of feeling relatively ok.

So, just for fun I thought I would give you an idea about side effects and late effects. Everything right now is from treatment, not from the cancer itself. Some are late effects of surgery and radiation, more poison-slash-burn effects.

Here are the things that are going on:

Blurred vision: due to Xeloda/capecitabene.
Cracked fingers: again, Xeloda/capecitabine.
Extremely dry mouth and lip sores: not sure whether Xeloda, Tykerb, or something else.
Dizziness: Xeloda/capecitabene
Fatigue: sometimes even cancer patients finished with treatment experience a lifelong increase in fatigue.
Intermittent nausea/vomiting: Xeloda and Tykerb? One or the other? Who knows?
Intermittent diarrhea: Tykerb? I think.
Really spacey and forgetful: Whole brain radiation and on my third round of chemo, which has no end point. Chemo and brain radiation are known to cause cognitive issues.
Still working on range of motion in my right arm: mastectomy and axillary lymph dissection.
Intermittent pain in right chest and armpit: radiation induced rib fractures. Scans still show “five poorly healed rib fractures.” Or maybe Post-mastectomy Pain Syndrome (around 60% of mastectomy patients get this).

Here are the things that make me feel very lucky and happy:

I feel relatively GOOD! I practice yoga every day. I swim or walk as well. I am a yogavangelist and back to being a swimvangelist! There is nothing better in the way of tolerating all of the above and keeping a clear and calm mind. There are WAY worse scenarios than described above. Mine are all dealable (is that a word?).  I had whole brain radiation and experienced no brain swelling, no need for steroids, no complications of any kind except the obvious (see Really spacey and forgetful).  

I have generally been a very good at tolerating treatment. I’m well aware that this is due to random chance. Everyone I know has a different experience with these things. Some have awful side effects to the point of having to go off a treatment, some have minimal side effects, and some have something in between. No one knows why, really. During my first mets treatment, I ate mostly vegan, no sugar, gallons of green tea, blah blah blah. Lo and behold, brain tumors. Now I eat whatever seems appetizing and am doing pretty well. There is really no way to avoid whatever is coming your way with treatment. This is my opinion but I can back it up with an infinite amount of anecdotal evidence. There is also in the research field no data on why some people tolerate or respond to a treatment and some don’t.

I am so fortunate to have my family. I love seeing my kids grow into adults and I know how fortunate that is. I will ride this wave for hopefully some years to come. The thing is, things can go south in an instant and that’s always in the back of my mind (yoga really helps with calming the what-ifs and whens).  My husband is a rock and my main caregiver. He takes this role seriously! And, he is a very high-energy person, which helps when I am low energy. I am also so fortunate to have a solid, wonderful core group of friends. I don’t have to pretend anything. They are there when we need support, whether that’s rides to Portland, food, company, being soccer fans together, or laughs.

I have good health insurance. In my situation this is very, very, very good. Treatment costs a LOT.  I know many women who struggle in this realm. Insurance companies can be extremely uncooperative and extremely unsympathetic, only concerned about the bottom line. Some of the bigger insurance companies (like Blue Cross) have taken away patients’ PPO options and many of the large cancer centers (MD Anderson, Memorial Sloan Kettering, to name a couple) do not accept HMOs, which are Blue Cross’s patients only option at this point. Evil. I do not take for granted that my small, regional insurer is not going this way. Yet, I suppose.

All this is to say that though I consider myself pretty fucking unlucky to have this shitty, craptastic disease, I know that how it has gone thus far makes me a pretty lucky person as well.