|Mums at Longwood Gardens|
Two weeks ago, Wednesday, was our latest visit to CTCA and as many of you knew, I was a bit concerned because we were changing medications to the next chemo-cleanse drug and that required more conversation about dosage. It has taken me all of this time to get this blog written, lots to process and sit with I guess.
Wednesday felt like it was test, of the Can Amelia Stand in Her Power? system. As well as a day filled with opportunity, for clarity, knowing myself and responding when things were not as I needed them to be. Laura, of course, got to experience it also and was an invaluable support as well as clarity provider.
So, I need to write all that happened and share it, you are welcome to read on, there are certainly amusing moments in it all. If you don’t have the time or inclination to do so, suffice to say, all is basically ok, the new drug experience is completely different, and I appreciate your checking in on me and the blog.
For those who are hanging. Truth is, we knew that there were two issues to be attended to on Wednesday.
First, the dosage. New drug, Amelia’s same sensitive system. Taxol is a synthetic based on the Pacific Yew tree. It interrupts the process of cell division in a different way and has a whole new batch of potential side affects. With the Adriamycin/Cytoxan combo I had needed a 25% dose reduction, my NP has said we would need to reduce this dose, however we had to see the Oncologist for that. (He is a great guy, however I have not been confident I was heard by him very often in this process.)
Next issue, a bit more touchy, and frankly difficult to blog about. Weighing.
The only way to explain this, is to take a bit of a detour to the work that I have been doing for quite some time. You see, heck if you know me you know, I carry a fair amount of body weight. This is certainly not my choice, and it has made me very unhappy at times. I have followed medical advice more times than I can count, since I was a young child, and gained and lost more pounds than I care to count. At this point, I am learning to regain my own internal knowings about what works for my body. I have been doing this dance of good thin/bad fat for over 40 years now. It doesn’t work. It is now known that the single most predictive factor of weight gain is weight loss and that diets do not work. It is frankly amazing that I am as healthy as I am at my current size. I have an amazing body. My focus is to love and care for my body, speak to it gently, honor it and take as good care of it as I can. There is a lot of science and wisdom to support this, I am doing my best to turn around a lifetime of different attitudes and experiences.
There is much more to write on this and I want to share it in more blogs, and for now I will stick to Wednesday.
So, every time one arrives at CTCA for treatment, they do vitals and blood work.
For the vitals, we had gotten a young nursing assistant, who had an interesting idea of how to develop rapport. One time, as I stepped to the scale, she said… dun-dun-duuuuuuh! (yea, the sound effect, which implies suspense or revealing something scary). She got her head bit off by yours truly, as she explained that she was trying to “build rapport” with us.
Next time we had her, she announced my weight to the hallway outside of the room, seems remembering it without repeating it to everyone was hard. The double number of my blood pressure did not bear repetition.
Let’s be clear here, this young woman is not really the problem. She was just the obnoxious yellow highlighter smeared on a problem. Going through all this surgery and chemo-cleanse, I have gained weight; this is really hard for me to hold with love and with the added attention, it was becoming unbearable.
Add to how uncomfortable it is to have gained weight, while knowing I may gain more, I am navigating a new way of being with my body while being smack in the middle of all of Western Medicine’s judgements, beliefs and misunderstandings about bodies and weight. This sucks. This is my chosen path. Surrender.
So on Wednesday, this is what I kept communicating to them. That getting weighed was emotionally shredding me. That I was perfectly aware that I had gained weight, it was not unexpected on chemo, yet the weighing and looking at the number wasn’t working for me. I was working to be good to my body and take care of myself and I couldn’t manage the emotional challenge of weighing over and over, tracking this seemingly perpetual ascent of my weight was painful and not helpful. What I had to keep saying to myself was, “it doesn’t matter what they think, what judgements they have, this is what you need to do for you Amelia and it is ok. It doesn’t matter what people think.”
Prior to Wednesday, I had spoken with my amazing counselor, NP, and friend, Sil, about all of this, as I was clear that I could no longer deal with being weighed at CTCA. (It is important to note that my drug dosages are not based on actual weight so that argument was mute.) I was clear that it wasn’t going to happen, so on the way to Philadelphia, I called our Care Manager, to let them know and try to pave the way for that to be easier later.
Hah! I got a compassionate sort of response and no actual help there. The only person who could change that was the doctor. OK, no surprise. What I didn’t expect was that nothing had been said to anyone else. When we arrived on the fifth floor to see the Oncologist (at intake) we got another nursing assistant (since my complaint about the other one, doubt we’ll see her again.) I had to refuse to be weighed, and got push back about it from the assistant. That got us nurse #1 to come and try to compassionately talk me into cooperating. NO. We end up doing my other vitals, and I am amazed at how low I am managing to maintain my blood pressure through this.
More intake and history and tracking with the oncologist’s other nurse. Guess what, I refuse to get weighed again.
So, at this point, I have gone over this point four times before my doctor finally arrives, and I do it again. He talks a lot about standard of care and rules and understanding and …. it is all a jumble for me by now….. and in the end not only lets me off from getting weighed, he agrees that there will also be no reason to get weighed when I am going through radiation in February. (This is actually a bonus, as I know the head of Radiation Oncology has some opinions about my size; he has already expressed them.)
So, now, on to the important stuff.
Dose reduction. We go through it all, and Laura and I parrot back our understanding that it is important for me to get all the drug I can handle, too low dose a on chemotherapy could be useless and not provide the “cure” we are seeking. We talk about all of my side affects from the previous drug. We talk about how I don’t take usually any drugs… He agrees to lower the dose, how much I don’t know, and will continue to base it on the same pretend ideal body weight number we have been using, and goes to do the calculations off in the ivory tower somewhere. That is the last we will see of him for the day.
Nurse returns with the medication orders, we get to go through all of the details again and kick her our for a few minutes so that we can muscle test my body for the dosage on this new drug, it is a 10% reduction.
My system says ok, the dose is both safe and effective for my body for this round. All clear…. yea right….
Get some good info from the Naturopath, that is helpful.
On most weeks, we have a Nurse Practitioner who we work with, not the Oncologist. At this point, she stops in to say hi. Our room has been a bit of a party for the last hour or two, with so many people stopping in. We have developed relationships with lots of people at CTCA and Laura and I are comfortable in this room, visiting with everyone, knitting and chatting, as we step through all the challenges at the same time.
So, our NP says something about seeing us in two weeks. Ugn… no…. that would be three weeks for the next treatment… Well, now that we have crossed the two expected hurdles, we discover that the doctor thinks I should be getting the Taxol on a dose-dense schedule every two weeks.
I get upset on this one immediately. My body, my energetic system and my entire life, especially as a parent, has been prepared for the 3 week interval. They gave us that information in the beginning, and I have confirmed it twice since then. I’m not coming back in two weeks, I am coming back in three. All we get back is that the doctor has good science about doing it dose-dense and that is how it is to be done. Uh… no.
This really took another batch of my own power to buck the system and say “no, I will be back on the schedule we arranged in August.” I used more external things, like my sister coming in February to care for Sarah while I am getting radiation five days a week in Philadelphia, and how I couldn’t change all of those things.
What was really going on underneath was that I couldn’t change the timing my body was expecting for this process, I couldn’t speed it up.
So we got to go through that issue with the scheduler and two nurses, and the doctor, as he is the only one who could change the orders. We return in three weeks. I don’t know if we will have to revisit this the next time. We were two hours late for infusion by now and we wanted dinner and to get moving on the process.
And have I mentioned… there is a significant risk of allergic reaction to Taxol. So to manage that, I started taking steroids the night before the infusion and was taking them throughout the day… So all of this was done on steroid brain, yuk.
And, just for fun, my body has identified the fact that it gets sick when I go to CTCA. So all of its protective systems are on high alert for poison. Since so many of the systems are damaged, that seems to leave the major work to my olfactory system, my sense of smell. It had been very sensitive and many things made me nauseous, however at CTCA it was on overdrive. I couldn’t be in the cafeteria, I found I couldn’t eat much of anything, and food smells were making me gag.
It was dinner time when we arrived in infusion. Many of the patients were eating and the place was filled with smells. Not good. Get’s better when we get back to our cubby and are waiting and our new nurse does not even introduce herself. Then I catch her energy/style with other patients and know that this will not be a good match for the evening.
So, up to the front to find someone I know to get a different nurse. Nobody I know is there except the desk nurse, so I talk to her. She asks me to wait, I go into the waiting room and Laura joins me. Then the nurse I had been assigned shows up with another nurse to find out what the problem was. Only thing is they were cornering me into a room and I pushed back right away. Asked them to back off, Laura did too. Explained that I wouldn’t work with someone who did not even introduce herself. Kept my temper, released a lot of power however.
The nurse in charge was waiting, she was very energetically aware, kept her energy in her spine and back, so she wasn’t pushing at me and was very clear and helpful. She changed me to another area, got me a nurse I was familiar with and got everything started.
Only issue, some of the pre-meds were incorrect, thankfully Laura was able to track all those details, they were about to give me Aloxi, proven to cause me migraines, again.
I got really nauseous during the infusion, mostly because I was exhausted and hungry and my adrenals had been running on overload for hours. We tried for oatmeal, not available, finally a tech went to the kitchen and made me some grits, he was an angel.
And, during the infusion, the first signs of peripheral neuropathy arrived in my left hand then my right. This has been the major concern about this drug, I am being very proactive on treatment, however to feel nerve damage almost immediately upon receiving the drug, that really floored me.
So, I made it through, Laura did too. I got my infusion of Taxol, and I have three more. The side affects over the next week were pretty nasty and all the parts of the infusion day were such a journey, it has really taken time for me to process it all out.
Where are we now?
I return, (three week interval) next Wednesday. Thanksgiving is going to be a non-event this year. We have a great Cedar Run Farms turkey coming, which we will cook and use to make a lot of soup next weekend.
This week is my first week off in a long time. I am not recovering or going to treatment, and I am not recovering from a surgery. Whew.
This morning I am missing my beloved Education for Ministry class because Sarah is home with a tummy ache, so I am blogging and watching the ducks on the river.
Love to you all,