Today marks the 75% point, with three of four treatments now complete. Each one I finish is its own milestone, has its own personality, occupies a full day in my life, and brings aspects which have surprised me each time. To those who know me, you know I ask a lot of questions. Sometimes I get a dead end, and if researching, pore through more websites or calls to doctors to get to the answer I need. In the case of doctors, you can tell the ones who aren’t going to give you much time, those that stand up soon after the exam and head toward the door, with little time to get your questions in. But I manage to always at least get a few checked off my list before that door shuts.
The doctors, PAs and nurses I’m dealing with from my malignant breast tumor diagnosis are all great listeners, and I believe each of them genuinely wants me to experience success. You’ve heard that there are no stupid questions and that is indeed true. Asking questions leads you to new information, insights or even leaves you still without an answer. But if you keep going, keep looking at it from different angles, you’ll find with every symptom our bodies are trying to tell us things, even when it seems they’re refusing to cooperate.
With every symptom our bodies are trying to tell us things.
Case in point: Last treatment I had a helluva time dealing with the IV. Left wrist just wasn’t working so they moved to the right. Less of a battle there but still it felt unnecessarily carved up. Bizarre and painful to experience and certainly didn’t leave me confident about next time, about yesterday’s treatment. But at my halfway appointment between treatments where they draw blood to see how low your white counts are – there’s a range you should fall in and if you are under that, they can give you medicine to elevate those counts (thankfully mine have always been good) – I brought up the botched IV, how much it hurt, etc.. Even more important than my personal pain and anxiety surrounding it was the why. Why did this not work for my body when it had during my first treatment? The nurse suggested I needed to hydrate even more, especially the day before and day of my treatment. So hydrate I did and today’s IV and treatment went beautifully from start to finish. Up at 6am to shower and do my once a week shampoo, pack up my enormous Ikea bag made crazy heavy by my weighted blanket, a must if you’re gonna be cold and want some extra tlc.
Decided to treat myself and the night before called a nearby neighborhood grocery with a deli where I’ve discovered a favorite sandwich, the Mulligan. Who doesn’t love a mulligan or two or three? I’ve golfed and always make sure I allow for mulligans, yes plural – at least one for each 9 holes. This mulligan has turkey and avocado and the most perfect thinnest mandolin-sliced cucumbers flanked by delicious wheat toast, plus a little mayo and salt and pepper. Comes with cheese and bacon too, which I opted to hold as well as a middle third slice of bread. They said they’d make it when they opened so I could pick it up just after 7am, along with a bag of ice I’d need for icing my hands and feet. One stop shopping. Easy.
Got to Piedmont and they drew my blood to make sure all was well with various levels they monitor, and then it was a meeting with the PA to answer my four pages of questions. Never do I feel they’re looking at the door wanting to escape. She and the doctor give me all the time I need – sometimes a full 45 minutes – and let me rattle off any and all concerns, complaints and questions.
Next off to the 7th floor to the Infusion Clinic. It’s quiet in there and you get to pick your chair. The best seat in the house was open, right by the window in a little nook. Lots of guest chairs so my sweet friend Susan could sit nearby and even put her feet up if she wanted. Found a plug too so we alternated charging our iPhones.
I’ve decided to continue with the cold cap throughout my treatments, reason being is I still have some hair, or it looks that way under a cap. Last treatment the cap kind of hurt, like someone was pulling your hair, but I assumed that is just what I have to deal with for the 4.5 hours I have to wear it. I think it didn’t fit well and that is why I have some bald areas on my scalp and my left side is a criss-crossing of hair that partially reveals my skull, so not an option to go out hatless. I have a newfound understanding for men who do comb overs (except one tan man who unfortunately found his way into public office). This go round we worked even longer with the fit. You have to bring maxi pads which they tape to the bonnet under the actual cap trying to remove any air pockets which will lead to bald spots. So you sit there with a cloth bonnet, then a plastic covering with maxi pads taped on top and then on goes the actual cap which will fill with icy cold water and soon turn to ice. You get a brain freeze the first half hour but then you forget about it.
Prior to this treatment I reached out to the cold cap people sending them pictures of my scalp bald in places, and that I was planning to get a wig. They told me wearing a wig is not a good idea because the extra heat it adds to your head plus the pulling when putting on and off undermines all the scalp cooling I’m doing each treatment. Brand new news but news I needed, so I cancelled the wig. The cold cap people claim with scalp cooling my hair will grow in my regular blonde color vs grey or curly or something altogether different. Also they’ve said – and my own research corroborates this – that your hair will grow in more quickly – 1-1.5” per month vs the typical .5” growth you’d experience – that is IF you ice your scalp. So I’m rolling with silk scarf lined berets and baseball caps.
They started the IV and did the premeds so we could avoid a repeat of last time when I had bizarre sparkly floaters, a beet red face and awful chemical taste in my mouth, plus nausea and vomiting once home. First steroids and then Benadryl in my IV. Uppers and downers so I suppose I kind of broke even! Enjoyed chatting with my friend Susan who is so kind and calm. Almost hard to stay awake at times from the Benadryl, but glad it left me comfortable and relaxed. All the premeds were great shock absorbers for what I thought would be a bumpy road, but the road felt recently paved and slippery smooth this go round. Once it got to be noon we decided we’d eat our lunch. The sandwich wrapped beautifully in waxy white paper was everything I hoped for, and Susan had a lovely Greek salad to enjoy. We shared pictures on our iPhones of our kids and travels and whatever else came to mind. She adjusted my ice for my hands and feet, dumping out the water when it melted. She even several times massaged my freezing feet with her warm hands, extra loving touches that were divine.
The road felt recently paved and slippery smooth this go round.
Once the second medication was nearly done, Susan packed up and headed home as she was meeting someone. I remained the last two hours under my cold cap and weighted blanket and dozed off and on, relaxed and warm and still sated from my sandwich. They came to remove the cap and I waited another ten minutes in the ever-so-comfortable chair. Like after a massage when they leave so you can dress and you just lie there basking in the moment. This was one of those.
Up this morning and I don’t yet feel any eye twitches. Have a flushed face like usual but that is all. I think my body instead of fighting what it initially considered these chemical invaders is learning to live with them, and maybe they’re learning their place too, in the background with my strong body in charge. My body is rising above the symptoms they keep trying to bring. The scalp has stopped tingling and the hair shedding has largely dissipated, so maybe it’s all downhill from here? With three treatments behind me I think I’ll stop worrying about what will happen next because I’ve already seen it, lived it and now my focus is just on staying healthy, getting good sleep, eating well and moving.
Maybe it’s all downhill from here?
My posts about this diagnosis have been up and down. Sometimes I whine when I feel bad or scared, and when I feel good, I talk about gratitude and hope. Today I feel good so I guess that’s where my brain is settling. I think back on these last few months, and the wonderful meals a few friends have lovingly prepared, little gifts friends and family have sent, and I am bowled over with appreciation. Even the texts now and then from people telling me I’ve been on their mind – you can’t begin to know what lifts these things bring. You’re reminded that you matter and people care and love you, and on days when you’re tired of the grind, tired of the stamp on your back with this diagnosis, it helps you climb out of the situation and return to yourself. And then there are the walks with friends. Just yesterday after I returned from treatment, I headed out on a dog walk and was pleasantly surprised to run into a friend, a neighbor who lives down the street. We walked a half hour together with our dogs and caught up, and she even called me later asking if I needed anything as she was headed to the grocery store. It’s these little things that I will always remember when I look back on this time.
With all this, I’m reminded how lucky I am to have the excellent healthcare I do and the support of family and friends. I think of people with this same diagnosis who might not have insurance of even a roof over their heads, and then I want to put away my stupid petty complaints, the hair, the eye twitches and all. What matters most of all is having human connection when you’re facing something that at times feels monumental. Others will help you carry it and want you to let them. And so I am.
The snow is lightly falling and our construction crew is outside pouring the slab under what will soon be our screened porch.
Grateful and sending love. XO