Saturday, August 17, 2013
Hi. How are you? According to the site I still have blog followers. So, what's up? Why am I writing a post at this time? Dont' know. It has weighed heavy on my heart that I did not keep my blog going, even with just the occasional post, updating on what's going on. One person told me that since I had just dropped off with the posts that she had worried that I had died. And I certainly would never want to let my silence be construed as such. My bad. Why didn't I keep posting? Even just a little measly post saying "Hey"? So no one would think I died? Same reason that my posts became fewer and fewer. I did not want to continue to deliver discouraging or "bad" news. I really wanted to get to a place of stability before I wrote again. Yet that day was elusive. I am happy to share that TODAY I am enjoying a period of stability! Yes, I think more "ok" days are here. And "good" days have become more common. Hooray!! It has been five and a half years since my breast cancer diagnosis and I remain in remission. Yippee! And it has been five years since my leukemia diagnosis and I remain in remission, with no sign of the faulty chromosone in my blood. Holy cow! And it has been four years since my bone marrow transplant and I am still here! I can't believe the time that has gone by. Mostly I can't believe that I am still alive. And I mean that literally. I have only recently come to believe that I may just make it. That it's ok to plan for the future. To daydream and envision future events. For so long I lived day by day, week by week, that even planning out anything was risky. I've cancelled so many dates, for me and at times by default my family, due to poor health. It was at Brennan's First Communion/Confirmation in May that I realized I had just witnessed something I truly thought I would never see. It hit me hard. The wake-up call was there and I heard it loudly. I made it! Now I am dreaming about middle school graduations and high school. First girlfriends and kisses. I don't dare go out much farther than that. But again, I never thought I would make it this far. I will write another post soon, filling you in on what has been going on medically since I have last written. It has been a long, arduous, and winding road. My body still fights me. I still fight my body. Insurance companies still drive me crazy. The bills keep coming. I still see my counselor. The family still struggles with the defecit of a full-time wife and mother. But alas, we all have problems, don't we? For now, I ask that the reader accept my apology for silence and understand that I have waited for a day when there are good things to share and when life was more stable. And that day is now!(Never mind I had surgery three days ago....) Celebrate with me!! Sally
Monday, March 5, 2012
Sunday, March 4, 2012
Today marked the third anniversary of my last day of chemo before my bone marrow transplant. Tomorrow will be three years since the "Day of Rest" that I was given the day before transplant. The 7th is my third birthday.
So three years ago tonight I was relieved that I had gotten through days of outpatient chemo, ultimately consisting of 29 little pills stuffed into gelcaps. I actually did pretty well and did not experience all the potential icky side effects (with nauseau meds on board, of course). Then it's Check-In Time, the absolute no-turning-back point of entering the hospital for the Inpatient portion of "Conditioning", the fancy word for ungodly amounts of chemos/treatments. This too didn't seem so bad and I was asking if for sure it was working. My Attending kept telling me that it was and that soon I would feel it. Ah, I thought that perhaps this stage of Conditioning might go as well as my Outpatient Conditioning.
The results of all the conditioning would be that I would be technically dead, as I would have empty blood flowing through my veins. I ultimately would have no red blood cells, no white blood cells, and I would require a sort of hyper-vigilism that I could never have conceived. Eventually I would need frequent transfusions of empty blood, and of empty plasma, as my normal loss would need to be replaced.
Now mind you, by my day of rest I wasn't feeling well, but I didn't feel how I looked yet nor how I had anticipated I would feel at this point. "IT" was yet to come.
I had made it through the month of February 2009. I had moved to Seattle, set up my home away from home, and endured nearly a month of testing. When I had arrived at Fred Hutch/SCCA I discovered I was a number, assigned to a "team" that happened to be called "Lime Team", and was processed through about three weeks of outpatient studies, system evaluations, and deemed to be a viable candidate. Each day I picked up a "Patient Itinerary" which would detail what was in store for the next day's schedule.Every day I was in clinic, for any number of appointments. This was not always a convenient schedule as there could be big gaps between them. Or the day could be full to the max. So we would take the special bus back and forth sometimes. At the beginning sometimes we walked. Finally, I signed my life away, literally.
Every inch of my body was looked at, poked, prodded, xrayed, scanned, MRI'd, ultrasounded, and made to not be mine. It was very hard to tolerate and I was often without a caregiver and going it alone. I could not now go back. I was a transplant patient.
Key to that status are a few "procedures", like a couple bone marrow biopsies, bone biopsies, and the insertion of the Hickman catheter. It is surgically inserted right over the heart, with leads placed in my heart and two long cords hanging out of my body. It was thus imperative that I wear a necklace or sorts that held a clamp, required to keep the cords/IV tubes shut. It was but another fear of God experience, knowing that if the cord or leads became open, I would bleed to death quite quickly.
Another favorite before I was admitted to my new home at the Bone Marrow Transplant Floor at the University of Washington Hospital was the infamous what I call "white board days". In short, I would meet several times with members of my "Team" to discuss my odds of living, and if those odds did swing to the living side, then for how long. It was one of the more difficult parts of this process as well in my entire life. This room regularly showed me how serious this all was and brought a life to a matter of days or months. I am not a big fan of the white board room.
Anyways, I digress. Here are just a few of the ordeals it took to survive to transplant, the first goal, and the first white board meeting topic. I just hadn't thought in those terms before.
I do want to write about being in clinic. Every day you had to pass a health screen in order to get your sticker, which would allow you access. Almost every day brought blood tests. But I cannot emphasize enough how difficult it is ti be in the Transplant Clinic. It became very clear taht all in there where at their last stop. I came to realize it included me as well. Everyone there is in some stage of dying and it hurts me to be there. (Thus my strong reluctance to go back.)
In addition there are classes to take. The big ones are about food safety. A very strong culprit to making a marrow transplant patient sick is food-bourne illnesses. You end up triple washing everything, keeping a thermometer in your fridge and asking the cooking temperatures if you daye to go out to eat. Lots of things are simply off limits. There is also a Caregiver class. Patients are not allowed. Since you must have a caregiver with you 24 hours a day the ENTIRE time, this class is a big deal.
Going on the special bus to the grocery store is also a big deal. It likely becomes your outing of the week. Naps also consume a great deal of time. As you get weaker and sicker from the conditioning, this is vital for the patient, and Craig.
I've included some pics from various experiences, from my new digs, to SCCA, to hospital, and a few of the inbetweens. You may notice I gave you factual info and only a few thoughts and feelings. Like my boys' trip over to see me before transplant, I can only share some photos rather than talk about that time. It was sacred and my chance to say a final goodbye and get what might be my last hugs, I doubt I will ever elaborate.