Re-birth: lessons

Yes, it has been some time since I have written in this blog but I excuse myself because I have been going through this miraculous re-boot of my life in a slow and somewhat difficult process called a stem cell transplant. Let me explain some of my thoughts as I have been going through this experience.

I have thought about our first arrival on this earth as a newborn baby. We usually focus on the joy of the arrival of a cute bundle of joy and yet, having experienced childbirth myself as a mother of four children I can attest that the journey to that bundle of joy is not so easy. Labor is really a great word to describe the process because it is incredibly hard work as you go through the body squeezing out a 7 to 8 lb baby through what seems a tiny opening. Pain and joy go hand in hand.

Dunedin chapel

My mind then goes to my first experience of a re-birth in my life. At the age of 20, I was a student about to start my final year in university when two missionaries from the Church of Jesus Christ of Latter-day Saints knocked on my door one evening. Following an incredible spiritual experience over the next two days with the Book of Mormon, I accepted the invitation to be baptized a member and I was baptized that second night in a remarkably simple ceremony in the presence of four young missionaries. In my excitement at my experiences of those days, I phoned my parents to share my great joy with them. I was young and naive and recognized that instantly when I heard the anger and pain in my father's voice. I regretted not giving them time to get used to the idea.

For three months my parents did not speak to me until they called me to ask if I would help with a social occasion at their home. I was relieved, believing the
stand-off between us was over. I walked into their home at the appointed time to be confronted by a room full of Catholic nuns and a priest. Looking back, I

My Dunedin flat

realize that my re-birth was swift and brutal for those around me. It was the painful part of my decision as I became separated from members of my family and my friends who didn't understand my decision. As for me? I was filled with an indescribable joy and a sense of real peace that confirmed I was in the right place. So great was my love for my new faith that all I wanted to do was serve a mission. My life literally experienced a re-birth that has dominated every decision since.

My next re-birth experience has not been so quick to happen but it certainly has been pretty brutal. At the time of being diagnosed with multiple myeloma, the medical staff set before me the goal of undergoing a stem cell transplant. It was described as the best opportunity to re-set my system and go into remission.  A little more than 2 months ago, after undergoing a number of rounds of chemotherapy to get my cancer levels to almost zero,  my medical team said that I was ready for this next step. It was both exciting and terrifying.

I have learned that you can want something very badly and yet live in fear of it simultaneously. The process began with being strapped to a machine that extracted my blood, took out the stem cells and then pumped that blood right back in, all via something called a central line that had been installed in my chest.  That central line was my constant companion for almost two months. So far go good!

Almost two weeks later, on June 23rd,  (and after my third test for Covid19) I entered the Huntsman Cancer Institute to begin the actual transplant. In this time of Covid19, this hospitalization was different for me. I would not be able to have
visitors, including my sweetheart, Alan. It was a difficult farewell as Alan handed me over to a hospital transport service at the door.  I faced the rest of this journey on my own and I missed the touch of his hand very quickly.

That very same day, they settled me in my hospital room and they began to pump in a very heavy chemotherapy via an IV that was designed to wipe my immune system to zero. If I was to be reborn, I had to be brought to nothing first. In true American style they warned me before it all began about the probable side effects including vomiting, nausea, diarrhea and a debilitating fatigue. Was I scared? Oh Yes!

The following day, in came my harvested stem cells in this cryogenic container and I welcomed them all back via an IV. The idea of a re-birth or re-booting of my body was emphasized when the door to my room opened and this whole group of medical staff piled in, armed with a birthday balloon and a bag of
goodies and sang "Happy birthday" to me. I felt pretty good right at that minute.

For a few days, I was able to walk the halls of the ward and feel pretty normal and then around day six after the transplant, the fatigue and the nausea hit me like a bomb! The nurses reminded me that I had 5 responsibilities in this process: to eat, drink, pee, poo and move. I foresaw that only one of these tasks was going to go well. The other four required what felt like a super human effort.

Just when I was feeling close to my worst, a late night delivery arrived in my room. It was a parcel from Alan that contained a photo of us taken before I cut my hair super short and a plaster cast that he had made of his hand so that I would have his hand to hold, even if it was a little colder than the original. That bolstered me and made all the nurses cry.

Nothing can prepare you for the necessity of the special clean-up crew coming to your room in the middle of the night because of yet another bout of uncontrollable diarrhea. Two weeks after the transplant and I finally had a day without throwing up or the diarrhea. On that same day, they decided I was ready to be discharged.

I did not expect to feel so ill after discharge. I have now been home for two weeks and I wish that I could say that my re-birth process is now complete and I am back to leading a normal life. My fatigue is still debilitating, I still experience nausea and my bowels have taken a hammering but slowly, very slowly, I am getting stronger and feeling a little better all the time. From having to rest after taking ten steps, I can now make it around our condo ten times before resting. This rebirth is the most painful of all the births so far.

My greatest fear is that after undergoing such an overwhelming process that the stem cell transplant will not put me into remission. The odds are 60/40 in favor of going into remission but that is not 100%. In this re-birthing process the joy that comes has yet to come. But I have to remain positive and fight for this joy to come, to do my part. I will not know the results until day 90 after the transplant at the end of September. Roll on those results!