Thank you for your love and prayers this past week. It has been a week unlike any I have every experienced or imagined. If you can hang in with the story, please do.
Short story, my body did not handle the (unexpectedly large) dose of chemotherapy drugs well. In fact, it made me quite sick, painful GI issues, dehydration, migraine, edge of nausea, exhaustion, emotionally torn apart, and oh… I couldn’t catch my breath after walking up one flight of stairs. And my issues started on day two, which should have been a big tip off, since I was told days 3-5 were the times of concern, and issues continue still a week out. Oh, and there was that ER visit on Tuesday.
The long story.
On Thursday morning, I remember lying in bed for about 45 minutes trying to figure out the timing of Zofran for nausea. Basically, the math problem was, if I take this at 8am, and I take it every eight hours, what times would I take it later? This took me from about 6:15am to 7am to figure out. At which point I had was able to convert the answer to an hour earlier and just take the pill at 7am, 3pm and 11pm. (just so you know I did figure it out)
Thursday, headache getting light sensitive and breakthrough nausea that was managed with lots of ginger. We drove home from Philadelphia with a very healing and lovely stop at Longwood Gardens. I sure wasn’t my normal self, but I pulled through and enjoyed the waterlilies especially.
Friday, yuk, GI pain started, nausea in background, headache became very light sensitive migraine. Finding food I could eat became a problem, yet I discovered if I didn’t eat a bit of something, the low blood sugar crash was even more miserable. Saturday, the same. I was simply miserable, and we kept trying to explain it away, this is just chemo, I am pretty conscious of my body – so more sensitive and aware, and even the classic Yankee “Buck Up” was running through my head by then. From someone whose practice has been to be gentle and loving and I was fussing and telling myself to get over it. That didn’t work so well.
Sunday, a healing session with a very skilled Shaman. Thankfully. Spirit got me there on a wing and a prayer by whispering different stories in my head that resulted in me being just down the street from Sandy’s temp. office and realizing that I could go to my scheduled appointment in person. Wow.
At that point I got my head back connected enough to quiet so many of the stories and feelings that were running amok. And my body got soothed enough to come down off of high alert. Later that evening Laura and I took a walk, and I discovered that I was completely winded three houses down, and simply couldn’t get my breath as we walked back. That was worrisome. Nobody said anything about lung concerns.
My brain had also registered some of the information that our (angel) nurse had provided us after the infusion on Wednesday (She said she usually didn’t write all the details down, but I might need them.) The dosage of the medications Adriamycin and Cytoxan kept coming back to me, and I realized that I had received far higher doses than we expected. That freaked me out, a lot.
Did I mention the heat of the headache and the flush? I felt like I was burning up, like my brain was crispy, my eyes hurt, and much of my body was hot and flushed, no fever though. Ice cold water, lots of air conditioning – were the only way too make me comfortable, sort of.
And hey- this was consistent with my understanding that this was going to be a burning off of what I no longer need. Here it was, heart burn, belly burn, lung burn, head burn, eye burn…
So Laura and I continued to make it ok and soothe the symptoms. Except I was now mad about the dosage. And feeling betrayed by my doctors. And mad. And sad. Let me say more about Laura. She has been at my side through all of this, doing her best to help me be comfortable and well taken care of.
We had gotten lots of lists of what to call about – all of my symptoms were just below the call/emergency threshold, but I had symptoms from every section of the list??? They worked so hard to not create side effects by suggestion, and downplay them if they happen, we simply didn’t have the information to know that what was going on was way over the top and not at all expected for a first round of chemo.
So yeah, we started calling and asking for advice. It took a couple of rounds. Finally I really pushed it on the lung pain and shortness of breath and they wanted me at the emergency room right away for a chest x-ray, and fluids and something for my belly and headache. This was Tuesday, mid-day. I knew I needed to go, because I needed fluids and I was concerned about breathing; I find it quite vital to life. Laura was not happy, taking an immune-suppressed wife to the ER was not her favorite plan.
The other reason I went was to be compliant patient. I am going to be pushing pretty hard back at my doctors next week when I go for my scheduled second round. I have done what they asked, and got the medical treatment.
Now, the ER, another real challenge. An hour to be seen, three ’til the IV was actually running saline. Laura was great. Sister-in-law Cara is a nurse, and she had made it clear to Laura that if you are ever in the hosptial, ER esp, you must be the squeaky wheel. Everyone is busy and unless you keep pushing and asking and being annoying, you will simply be at the end of the line. Laura was able to do this; I had no push in me. Note to all – bring a pushy advocate to the ER if you ever must go!
So, a couple of EKGs, blood work and a CT scan turned up nothing. I did not have a pulmonary embolism, blood work including cardiac enzymes was all good. The doc wanted to keep me overnight for observation and a echocardiogram in the morning (I am so jaded, I read that as profit not need). I talked her out of that with some negotiation. I wanted home, I needed real sleep, I didn’t need to catch anything thank you kindly. We were there for 7 1/2 hours total. Thank you to dear friends Kat and Jerry who got Sarah from school, entertained, fed and looked after her all evening. And Kevin of course too – as she ended up having to go home with him, as we didn’t get home til after 11pm.
This is a long and rambling narrative. I have so wanted to be able to write sooner and share what was going on, and I simply have not been able to sit up at the computer and type. Thanks for hanging in with me on all of it.
So, where are we now?
I am scheduled to see my doctor’s assistant next Wednesday before the next infusion. I have made a lot of noise about how we must discuss dosage. There will be more noise before Wednesday.
Because this is the deal. Adriamycin is very toxic for the heart. There are known lifetime maximum cumulative dosages. When combined with Cytoxan, that lifetime dose is 450mg. We were educated about this at CTCA and told that total cumulative of my doses would not exceed 200mg, because that is a level believed to be safe for the heart. I received 95mg last Wednesday, and that was the first of four infusions of this drug combo. So at those levels I would be getting 380mg.
380mg is not acceptable. Not to mention the massive dose of Cytoxan I got with it too.
I’m frustrated, mostly because we spent so much time thinking I was being listened too. We are up at CTCA because they have a reputation for combining all of the holistic parts into the care and spending enough time to get to know people. We thought that was happening, and were mistaken. We didn’t check dosage on Wednesday, we had been so educated about the risks, it didn’t occur to me that I received almost a double dose. And my system is extra sensitive, I take half doses of things, so it isn’t surprising that I had such a miserable experience.
So, I am working on the next steps. A big conversation with my doc and a drastic change in dosage is required. I am holding that I will be heard and this change can be effected, allowing me to move through this process more gently.
And to all those dear friends who want to help fix this for me. Thank you. Please simply sit with me in the trust that I have what I need, this experience was somehow mine/ours to have, and it is taking me somewhere. There are many other doctors, I have connections to quite a few, and will go that route if it is necessary. Trust that Laura and I will navigate this and figure it out. If I need help in that regard, I will ask.
What I can use, prayer that I am heard and seen and get what I need and your understanding that I have been utterly unable to keep in touch with people and check in. I continue to appreciate the help of those who can give Sarah rides and time when I am able and all of you who check in, sending love and prayer.
And send love and understanding to all involved with my care. I am not typical, I know that.