It has been a long time since my last post; I apologize. The truth is that I have been pretty sick for awhile.
The past two chemo cycles, I have been hospitalized for a week at a time, starting on day seven. This past time, I was admitted through the ER on Christmas Eve. I went in vomiting blood because I had developed something called Mallory-Weiss tears in my esophagus. I also had a fever and my blood counts had bottomed out again. In addition, the ER doctor said, “Your heart rate is scary high and your blood pressure is scary low, so you’re going to be with us for awhile.” They wouldn’t even transfer me to the oncology unit until the cardiac stuff had stabilized. I ended up getting a blood transfusion on Christmas day, and having an echocardiogram a few days later.
Each cycle has hit me harder than the last, but the good news is that I had my last treatment two days ago. Only the fact that this is the last one is making it do-able for me. I’m scheduled for the end-of-chemo CT scan on January 15th, and I will likely be in the hospital at the time, as that will be day eight of this last cycle. We’re hoping the scan will show that the chemo worked and that the cancer is in remission. My mid-point scan, after the third treatment, showed that the cancer under my arm was gone and that the cancer in my neck had shrunk dramatically. There were lesions on my liver that hadn’t changed since the pre-treatment scan, and there was a new nodule in my lung. However, we don’t know if the liver lesions and lung nodule are even cancer. They could easily be lupus or something else. The post-treatment scan should give us a better indication.
The best news of all is probably the fact that I have received such excellent care on 1A, the oncology unit. The nurses there are phenomenally knowledgeable, kind and caring. Further, after I wrote a note to Dr. L. about my concerns, she has also been amazing. She was genuinely very upset about the experience I had been having. She explained to me that admin at the cancer clinic want follow-up appointments to be only 10 minutes. Because my situation is so “complex”, however, she has now been able to carve out significantly more time for me. My underlying lupus really does complicate things in unforeseen ways, and this requires constant problem-solving. Dr. L. is very good at that, if she is simply given the time to think about it and discuss it.
Along those lines, we had to decide whether or not to decrease the last chemo dose slightly. Dr. L. is worried about me developing a myelodysplastic syndrome and/or leukemia because my blood counts keep going (and staying) so low. She said, “your platelets went to 20. We just don’t see that with this kind of chemotherapy.” On the other hand, she pointed out that there is a 10-15% chance that the chemo won’t have worked on the lymphoma. Then I could always be second-guessing myself about whether it would have worked if I hadn’t reduced the last dose. In the end, we decided not to reduce the dose. I think the ship has sailed on preventing myelodysplastic syndromes. I believe the damage has already been done during the first five cycles, and slightly reducing the sixth dose won’t make much difference. Whatever will be will be.
The next steps for me are likely one more hospitalization, beginning on Thursday, as well as the CT scan on Friday, then a physiotherapy and OT assessment, and a neurology consult. (My balance has been getting progressively worse throughout treatment.) With any luck, I will then begin to heal. As soon as my picc line has been removed and my blood counts have recovered (assuming they do), I’m going to head to the two places I need to go to regain my strength — the gym and church.
I imagine I’m going to fall pretty hard around Thursday of this week, and it will take me some time to recover. If I don’t post for awhile, rest assured I will still be thinking of you.
In the meantime, take good care of yourselves and stay as warm and stress-free as possible. January is brutal around here, so I think we all need to be a little kinder to ourselves at this time of year. And when all else is said and done, consider yourself hugged.
Eva, as usual you amaze me. I am praying for you everyday, and I know many others are too. I hope your scan went well today, and I look forward to hearing good news posted here soon. xoxo
Dear ML,
Thank you for your very kind comment. I think it’s funny when you say that I amaze you because you have astonished me from the moment I met you, and you continue to do so. You are truly one of the most talented, intelligent, kind and caring people I have ever met.
I’m in the hospital right now. My scan ended up not happening yesterday, but it has been rescheduled for today. There are some minor logistical problems, but I’m still hoping it’s going to happen sooner rather than later.
I am so-o-o looking forward to getting through this hospitalization, getting my CT results and letting the healing begin! I am ready to be done with cancer and get on with life. 🙂
Thank you for your amazing support throughout this nauseating journey. I couldn’t have done it without you, and that’s a fact.
All my love,
Eva
You humble me.
Dearest Karrie,
Thank you.
The things I need to say to you are far too personal for this public forum. What I can say here is that I am more grateful than you will ever know or imagine for everything you have done and continue to do for me. The fact that you have undertaken this journey with me so soon after such a similar journey with your mother demonstrates your depth of character, courage and compassion. You are extraordinary. In fact, I wish I could find a more powerful word even than “extraordinary”. I rarely cry, but I have tears streaming down my cheeks as I write this.
Thank you from the bottom of my heart and soul.
Love,
Eva