Surprise, surprise!
BOX SCORE |
|
|
|
Element |
Current |
Std. Range |
Trend |
Hemoglobin |
10.6 |
13-17 |
v |
Platelets |
10 |
140-375 |
v |
ANC |
1080 |
1800-8300 |
v |
This has been a crazy week so far, and it's only Tuesday morning. I had my Monday blood draw yesterday. The Box Score shows the result. While all the scores are down a bit, the most important one is the Platelets. When they hit 10, the protocol specifies an automatic transfusion. After we arrived home, I predictably received a call from oncology. They scheduled a tranfusion in the only slot available, 3:30pm. Now that would ordinarily be an ideal time for us, leaving us plenty of time to get there and early enough for us to drive home before it is totally dark.
In this case, however, 3:30pm was not ideal, because I also had an appointment at a different clinic scheduled for 4:20pm. I did a little negotiating with oncology and told them if they would ask the infusion room to make a special effort to squeeze me in early, I would arrive at 2:45. Agreed.
Jessie, the nurse at infusion, called us in within about two minutes of our arrival! Perfect!! She quickly found a vein, which in itself was a miracle, since most of the veins in my arms are so scarred that it's difficult to get any blood from them. I feel like a turnip, when I go in for a blood draw. At any rate, the transfusion went smoothly and we were released in plenty of time to get to the other clinic, about a 10 minute drive away.
Or so we thought... When we got in the car and exited the parking lot, we found ourselves in the company of a couple of thousand other drivers at a traffic jam. We never learned what the problem was, but it blocked our preferred route, which would be via the freeway. Instead, we wended our way through rush hour traffic downtown and arrived barely in time for my appointment for an echocardiogram.
When we were taken in for the imaging, the technician apologized for being late. It seems that the room she normally uses had just hosted a patient who had some highly contagious condition. This sweet lady, having read my chart, realized that in my immonocompromised state, I didn't need to be exposed to a highly contagious condition. She moved to another room and carefully sanitized it before calling us in. We thanked her for keeping us from having to bear the responsibility of being late...and for her thoughtfulness and professionalism. Throughout the imaging process, she was very conversant and answered all of our questions, including my final one, "I know you can't make a diagnosis, but if I were your grandpa, would you be happy with what you found on my exam?" She said, "Definitely."
Driving home in the dark and the rain during rush hour is not my first choice for beginning a relaxed evening, but a man's gotta do what a man's gotta do, right? We had a sandwich and unwound with some TV before bedtime.
This morning, we met with Dr. Brow, my oncologist. We were not sure what to expect, but we were a little uneasy, and I was feeling for her, since I knew that this meeting was essentially scheduled because we are at a crossroad, so to speak, in our journey with AML. She admitted that this kind of conversation is not the most enjoyable part of her practice. On the other hand, she said, the worst appointments are when she has to tell someone, that there is nothing left to consider except hospice care.
So, I will try now to summarize our discussion. First of all, we got a surprise we hardly expected. Dr. Brow was on vacation last week, and in her absence the tumor board at Kaiser met and considered my case. They decided that, in spite of my relapse, and in spite of the fact that the current chemo regimen is no longer holding the AML at bay, I have been doing so well that they have put bone marrow transplant back on the table as a treatment option. Wow! The last we heard that option was out the window, because of my age. So this is a mind-blowing new development. That doesn't mean that I am going to receive a transplant. Dr. Cook at OHSU is the one who would be in charge of that process, and a consultation will be needed between Kaiser's tumor board and Dr. Cook to determine whether I can be considered for a transplant.
In the meantime, Dr. Brow is recommending that I go to the hospital for a month for a powerful regimen of chemotherapy, like the last time I was in the hospital for a month. This would be a different chemotherapy than I received back in 2021, but like that one, it is intended to prep me for a transplant, depending on how I tolerate the chemotherapy.
If Dr. Cook agrees to consider me again for a transplant, the same problem could exist: no suitable donors. If there is a donor and I decide to receive a transplant, it would mean another month in the hospital, this time at OHSU, followed by living within 20 minutes of OHSU for 90 days after I'm released from the hospital. That's a precaution in case I have a Graft Versus Host Disease (GVHD) reaction during that time, while they fine tune the anti-rejection meds I would need.
If Dr. Cook does not agree that transplant is a possibility, she may have a clinical trial (of some new medication) that I would qualify for. So, at this point, we are waiting to hear from Dr. Brow, after she is able to confer with Dr. Cook. It is likely that I will go to the hospital soon, as in next week, for the month long stay, including Christmas and New Years, of course. Beyond that we are still not sure what will happen.
I told Jill and Dr. Brow that my first reaction to all of this is, "I really don't want to to spend a couple of months in the hospital and live away from home for five months." But my second reaction is, "I wonder what that would be like?" In my journey with AML so far, God has been so good to me. I haven't suffered from many side effects, my body has served me well, and most of the time I have felt amazingly well. Not so much as a cold have I had to contend with. I will be spending a good deal of time in prayer in the next few days as we consider where to go from here. Wherever the road leads, I know I am not alone. My lovely bride will be by my side, and the Lord, the Great Physician, will be our guide.
Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:4-7)
Good Lord! Praying for lots of wisdom on this you guys!
ReplyDeleteThanks, Ben. We're taking it one day at a time and trying to deal with one decision at a time.
DeleteThank you for keeping us all informed and allowing us to join you in prayer as you seek God for peace and assurance during this "medical season." Love, Donalynn
ReplyDeleteThank you for your prayers, Donalynn, and thank you for being such a wonderful "sister" to Jill. I am so grateful she has you to lean on.
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