So, it's been a while since I last updated--but honestly, until this week, my care journey was pretty uneventful. With 8 of 12 Taxol treatments behind me, chemo has become a bit of a routine, with what appeared to be extremely insignificant side effects. However, I learned this week that the drug not typically associated with bad side effects (Herceptin) has started to take a silent toll on me.
I did switch to Anthem on January 1 and part of that involved starting up with a oncology cardiologist. She put in orders to start me off with a more comprehensive echocardiogram than I'd had with Kaiser--and that showed that Herceptin is attacking my heart. Fortunately it is likely an addressable problem--I'm going to take a 4 week break from Herceptin while I finish up Taxol. At that point, I'll take another echocardiogram and hopefully will be able to restart Herceptin treatments.
Another bit of bad news came unexpectedly in my first meeting with my new plastic surgeon, Dr. Davison. I'd noticed a small hole appearing in my port scar at the beginning of January. I've shown it to my nurses and oncology team and nobody could work it out--although they were confused by my continued port discomfort. Dr. Davison looked at it and immediately reacted disturbingly. My port was placed too shallow, so naturally it has hurt--and now my body is slowly expelling it. So, I'm not imagining the pain--if anything, my oncological team indicated that I'd shown a great amount of pain tolerance. Dr. Davison also pulled an errant stitch out--which ended up starting up a big pain cycle, for some reason (I'm managing it with Advil). I'm scheduled for surgery next Thursday to remove the port and place a new one, probably on the other side of my chest.
In the meantime, Dr. Davison also said I'm a good candidate for DIEP Flap reconstruction--essentially where belly fat is removed and used it to reconstruct the breasts. He recommends it because it will leave me with more comfortable breast reconstruction, more natural appearance, and no ongoing periodic need for implant replacement surgery (which apparently will be more difficult when I get older). It's also the only way he can make my breasts into a C cup (Kaiser did over inflate my expanders, although he did note that the surgery was very well executed). On the downside, recovery from that will be much more difficult and the procedure will involve multiple surgeries, including one that will involve 10 hours and two surgeons (and, yuck, drains). I'm not sure whether to get a DIEP Flap or breast implants--I've got an appointment with a care counsellor from Inova to get an independent opinion.
So far, chemo has been very easy. It is entirely pleasant taking infusions at Inova's new infusion center at the Schar Cancer Center--it's brand new and has a spa-like ambiance. They put me in a private room with a tv, good wifi, and a fully reclining chair--it's lovely. An added bonus is that they pull my labs off my mediport while setting me up for infusions, meaning no extra jabs (and those extra jabs have become increasingly uncomfortable for blood return as I've proceeded in treatment). They did give me one infusion through my arm and they have this really incredible machine that visually finds the veins in my arm (see the photo above) so that the needle insertion felt less than a mosquito bite. Amazing!
Interestingly--due to my cancer, I've moved up in priority for a COVID vaccine (to Tier 1b), but despite that prioritization, I'm in one of the patient groups where my doctors believe the vaccine is counter-indicated, at least while I'm on Taxol. Taxol suppresses my immune response, which is what the vaccine is intended to activate. So, I can take the shot now, it won't hurt me, but it also won't provide me much protection from COVID-19. I'll just continue quarantining until I stop Taxol next month and my immunities return to normal. My oncologist wants me to get a vaccine as soon as I can then--but unfortunately, there's no confidence that vaccines will be available at that point.
In the interim, wider COVID vaccine distribution has led to crazy traffic delays at the Schar, which is one building over from where they are giving out the vaccines. I have to head in about an extra half hour early just to get into my parking garage (fortunately reserved for patients for regular treatments) in time for my appointments. Pro tip: if you are fortunate to get a vaccine appointment, bring a portable stool, some reading materials (or phone entertainment & headset), and dress for staying outdoors--you are going to wait in line for a very long time.
Another thing I look forward to is starting up are progesterone treatments--either by aromatase inhibitor drugs or by Tamoxifen--once I get off Taxol. While these will give me side effects (most notably more hot flashes) I feel strong and mentally ready for adjusting to that treatment (hahaha, famous last words). I read up on how progesterone drugs work and they have really impressed me how they are incredible metastasis fighters for women with HER+ cancer--more significant than even chemo. So, I am really motivated about starting up that treatment next.
Overall, I feel much better cared for by my new medical team and optimistic in spite of the setbacks. The new team is identifying and addressing things that weren't noticed before. I am really surprised that I am experiencing insignificant reactions to the drug that is considered to have bad side effects but the "mild" one is harder. I am so glad I didn't go for Taxotere and Carboplatin, which generate irreversible heart damage (my cardiologist said that was a very good choice). I am still hopeful about finishing Herceptin and feeling more confident about my post-treatment prospects.
PS--I need to find a new primary care physician--anyone have recommendations in the Vienna-Fairfax area (I'm especially looking for one that has a responsive office staff)?
14 Hearts • 14 Comments
Send me emails on supporting a friend in tough times through stories, articles, videos and more.