Dear friends and family,
It's hard to believe, truly. My hospital days are now behind me! It seems only just a blink away that I was beginning the longest journey of my life so far -- 5 plus months of chemo in the hospital. I ended up spending every holiday, except for Easter, there. The rainy months came and went. So much of what happened in the hospital is blurred by a kind of chemo fog. Whole events, conversations, etc. are a blank to me. It is a strange experience, to say the least. I think I occupied, at one time or another, almost every room on the oncology floor over that period of time. I got to know all the nurses. Some became dear to me and I will miss them.
Looking back on the experience now, it seemed unending -- another chemo treatment always lurking around the next corner.... And now it is behind me. Time in this 3 dimensional world is truly a trip! At one end it is slow, painstaking... at the other it is like a passing breeze. Where did it go? And yet I experienced SO MUCH during those months that will need to be integrated into the present.
Although it seems a bit strange, transitioning from the hospital to home (and to outpatient treatment) is an adjustment, at least for me. Not a difficult one, but an adjustment nevertheless. As I gain strength, my desire to be more active also increases. But now is not the time for that. It is a new phase of healing, a time for gentle focus, for little pleasures, like walking more outdoors, having lunch with friends, and, of course, resting. Whenever I have unconsciously tried to push in my activities, even in small ways, my body has made it abundantly clear that that is an old pattern that needs to be released.
It is very much a new beginning in my life in just about every way possible. I went through way, way too much this last half year to just jump back into "life as usual."
The meeting with my oncologist last Thursday went really well. I told him I did not want to proceed with the final three weeks of inpatient Methotrexate. I truly feel that was the right decision for me, given all considerations. He was very understanding and said we would start outpatient this week. Outpatient is pretty intense too, but waaaaay better than the relentless, LARGE doses of chemo I was getting in the hospital. I had my first outpatient IV of chemo on Monday. The rest of the time I take oral chemo. There are still side effects, and I am feeling them. But nothing like before (at least so far!).
I learned something very interesting about Leukemia last week. There is a new way to find out if there are any Leukemic cells via a test generally known as MRD (minimal residual disease). It is much more sensitive than a bone marrow biopsy. Patients who test positive for MRD have an 89% chance of a relapse. The only catch is that you need a sample of the pre-treatment bone marrow tissue, and often this is not saved by the doctor. Dr. Polikoff is checking to see if mine was saved. I really hope so, as it would give me so much peace of mind knowing that my test turned out negative for MRD (giving me a 94% chance of a complete cure). There may be a way to do the test without a sample, but it is more difficult. I'm checking with experts around the country who are knowledgable in this field in case Kaiser can't help me.
What a beautiful time of year to be out of the hospital. The sun rises earlier and sets later, the land is sun-drenched as we head deeper into summer. Today it is nearly 90 degrees in Oceanside! I am focusing now on eating lots of greens and protein for my dear, embattled blood factory (bone marrow), sorting through 6 months of papers and "stuff" from the hospital, and whatever else calls to my heart and soul. Peter and I are planning a trip to Portland to attend the graduation of a friend who just completed medical school. We will have 5 days in that beautiful city in late June....
So much to be thankful for! I will continue to update my blog as the weeks go by...
With so much love and gratitude for all of you,
Heidi
