After a year and a half of planning and organizing, we had our first meeting of the Santa Cruz Bone Marrow Transplant Support Group last night. To say I was excited and apprehensive is an understatement. 20 people, patients and care givers attended with several other people saying they’ll come to future meetings. We sat in a large circle and each of us introduced ourselves and told our stories. Amazing, intense, heart breaking and more. The one thing that struck me was universally we all felt the need to come together to give and receive support. It was so obvious that this was a need that everyone hungered for yet did not exist in our area. I suspect Santa Cruz is not alone and post transplant life is an issue of BMT that has yet to be adequately addressed anywhere.
Just surviving the transplant for 100 days was the initial goal but with all the advancements in the field over the last 10 years, patients are living longer and encountering all sorts of issues with survivorship. Some of these are ubiquitous to cancer and chronic illness like daily fatigue, cognitive dysfunction, pain, a myriad of medical complications, psychological and financial challenges. Others are unique to BMT like the dreaded chronic graft vs host disease.
So, where do we go from here. It’s overwhelming and thank heavens we have a core group of 5 people working to make this group fly. A process that is evolving! One thing for sure, it’s exciting and I feel privileged to be part of this endeavor.
Every day takes me farther away from the “acute” transplant experience and is replaced with the challenges of “what’s next” on the roller coaster of life. Overall, I’m feeling good except for some minor persistent GVH mosquitos. The bad dermatitis and liver inflammation are gone since restarting Tacrolimus, the immune suppressant drug. I still occasionally get transient mouth sores and lesions after eating. They come up sporadically after a meal without a food predilection and last maybe an hour or two. I’ve also noticed joint stiffness but I am almost 64 so I’m entitled. The issue is always trying to differentiate bizarre manifestations of GVH vs normal aging or something else. I’m tapering the Tacrolimus but slowly so I’ll continue with the program and see what happens. In a way I appreciate the symptoms as a reminder of what is really important. If this is as bad as it gets, I consider myself very fortunate. GVH can be devastating and I know people who have had significant problems.
The Santa Cruz BMT Support Group is taking shape and our first meeting for patients and caregivers is scheduled for October 9. We have a list of about 30 people in the area and have yet to reach out to the rest of the Monterey Bay area or Salinas. We will use the Katz Cancer Resource Center for our meetings and have engaged the services of a professional facilitator versed in BMT medical issues as well as the psychological, emotional, physical, and spiritual issues. I’m really excited about this.
On the home front, everything is good. We recently went to our cabin in Puget Sound with our entire family and it was wonderful! Next month, Claire and I are going to England where I’m participating in a week long chamber music workshop and then to the Cotswold for 2 weeks.
Depending on how things develop with tapering my Tacrolimus, I hope to be able to go back to the practice of medicine part time next fall. I’m going to several medical conferences a week, reading journals, and participating in on going continuing medical eduction. I really enjoy it. It’s good food for my mind and soul.
WOW, it was 2 years ago today that I received my brother’s stem cells and yes, it seems like a long time ago. I’ve stopped counting my September birthdays but my July transplant birthday is a horse of a different color. By now I thought I’d be back at work but not so. I’m still on medications for GVHD so I need to keep my distance from sick people. The meds are doing their job and I feel good. So, for now I’ll enjoy the beauty of Santa Cruz in the summer, playing music, working with our BMT support group, spending time with my family and I’ll just keep moving forward.
Best to All
Jim
I was pleased with the way my bone marrow transplant talk at the Katz Cancer Center turned out. There were some old familiar faces, people who had either had or going to have transplants, and just curious people. Everyone seemed to find it interesting and enjoyable. I tried to look at transplants as both a physician, giving a medically didactic talk, and as well as a patient having gone through and going through the process. It sparked some good discussions at the end. Our ad hoc Santa Cruz BMT support group has grown and the local branch of the Lymphoma Leukemia Society is beginning to get involved.
On May 9th I went to the annual City of Hope survivor reunion which was nice. I always enjoy seeing old friends and walking around the grounds and reminiscing. I visited a friend in the hospital who was there for a relapse of her ALL. That was tough.
I also saw my COH transplant doctor while I was there. I was expecting some not so good news because I’ve been having some health issues recently. I had previously talked to my Stanford transplant doctor over the phone who thought from my description that I was having a graft versus host flare of my skin, mouth, and liver. So, it was no surprise that when I saw my COH doctor she agreed and started me back on Tacrolimus. It is fairly common to have intermittent episodes of GVH so I wasn’t surprised but I must admit, I was a little disappointed. I sold it to myself that I’d be the one to just skate through it all. Another detour but not a terrible one.
I had a follow up visit at Stanford last Wednesday and they added steroids to my regimen to get better control of the GVH. Steroids produce immediate results but I hope to be off them within the month. Unfortunately my doctor said that going back to work as a physician seeing patients is off the table for another 6-12 months and she expressed concern about me working in the garden due to susceptibility to fungal infections. We negotiated a compromise in that I will wear gloves and use a mask.
Every morning I wake up with a sense of gratitude and give thanks to God.
I’ve been preparing to give a talk on Bone Marrow Transplants and in the process, I’ve been reading my blogs. Such a dichotomy in that some of the experiences took place so long ago, yet when I read them, I feel like I’m transported in time. One of those Twilight Zone moments or is it the Outer Limits? Anyway, its been fun putting together this presentation and I hope that you’ll all be able to come. It will be nice to see everyone. It is going to be at the Dominican Hospital Katz Cancer Center fireside chat series, Monday, 4/28 from 11:30 to 12:30 (3150 Mission Dr. next to Dominican Hospital)
In general, I feel good and I believe my health status is stable. Since I stopped the Tacrolimus, I have developed a mild skin rash, probably GVHD but if this is the worse thing I have, I’ll take it and run!
Hi Everybody,
Yesterday was another milestone in my post transplant time line. I’ve been tapering my immune suppressant medications over the last 8 months and yesterday I took my last pill. It takes a while for the Tacrolimus which helps to suppress graft versus host disease (GVHD) to wear off. It is a fine line between the good effects of the donor immune system protecting me against bacteria, viruses, and other bad guys and the donor immune cells still seeing me as foreign and attacking me, GVHD. So far things have gone well, my brother’s stem cells seem to like me and I haven’t had any serious medical issues. I saw my Stanford transplant doctor recently and she said that I’m on the right track and that I should still stay on prophylactic Bactrim and Acyclovir for another 6 months while my donor immune system fully comes into its own. I gather that I’ll always be somewhat immune compromised but the question is to what degree. No one knows and it’ll be a process in evolution. What travel restrictions will I have? Can I eat Sashimi? Can I get live attenuated virus vaccines like the shingles vaccine? I’m planning on seeing my City of Hope doctor this May and will be having another bone marrow biopsy this July, my 2 year follow-up. That is the next big milestone.
I’m involved with stem cell transplant related education and issues as well as staying up to date with general internal medicine via conferences and journals. Come the beginning of 2015 I hope I might be able to return to the practice of medicine part-time in some capacity, at least volunteering at the local free clinic.
Life is full of activities and I appreciate that I’m healthy enough to partake of them. Although I can’t report any recent psychological, emotional, or spiritual revelations, processing and living the old ones is full-time and just fine by me.
Best wishes to everyone
Jim
Many of my friends and family have commented on healthy I look, the paleness in my face is gone. My standard response is that “blood is good” but I must say I still don’t feel like the sharpest tool in the shed. My mental acuity, dexterity, and memory have something to be desired. Is that from the transplant or getting older? Probably both but none the less, I’m appreciative of how far I’ve come and where I am now. As time goes on, the whole transplant experience and preceding illness has faded. But taking medications twice a day is a constant reminder of what I went through and there has been a visceral change in what is important in life, my values, and my spirituality.
January was action packed. Sam, Meg, and our new grand-daughter, Arielle, came to visit for 2 weeks. It was like the old days when activity bustled and kids where all through the house. The dishwasher was running every evening. It was wonderful.
I got asked to play the flute in the pit orchestra for a production of Sweeney Todd that began last Thursday at Lauden Nelson in Santa Cruz. It’s by AAT and the talent is very good. I’ve never done anything like this before, a new experience. Sondheim wrote it with time signatures and keys all over the place. Definitely one of the most challenging works I’ve ever done but what a blast. I’m also preparing for a talk on” Stem Cell Transplant” that I’m going to give on April 28th at the Dominican Katz Center. It’s free and open to the public. I hope many of you can come.
It’s a nice rainy day in Santa Cruz, at last.
I was at the City of Hope last Monday and as I was looking at people without hair, wearing masks, and looking weak, I recalled when I was in their shape. I’d look at people in the state that I am in now and I remember that I didn’t even dream of getting to this condition. Just living day to day was an accomplishment. I’m almost 1.5 yrs post transplant now and in general I feel good. I don’t have any significant GVHD symptoms to speak of, thank heavens! I wouldn’t mind having a little more energy and clarity of thought but who doesn’t want that. My blood test looked OK. My next mile stone is the Holly Grail of 2 years, July 6, 2014.
2 years is a big milestone in the transplant world. I’m not exactly sure how that came to be but it is. It includes the competency of the immune system, physical well being, problems of GVHD, medications, and prognosis of survivorship from many of the leukemias and lymphomas.
While I was at the COH, I finished my training to be a volunteer for “Be the Match” which means I can be involved with donor recruitment drives. I hope to help organize one in Santa Cruz. Also, our local post transplant support group in Santa Cruz is growing. A couple weeks ago, 4 of us got together to share our experiences, thoughts, challenges, and aspirations. I just found out a couple days ago about 2 new Santa Cruzians that are currently getting their transplants at Stanford. There is no doubt in my mind that it is just a matter of time till we have a critical mass of post transplant people.
Please put April 28th 2014 on your calenders. I am going to be giving a talk on bone marrow transplants at the Dominican Hospital Katz Cancer Center. Free and open to the public. I’d love to see and say hi to all of you.
By the way, I became a grand dad on 12/9/13 to Arielle Mara Engelman 6 lbs 3 oz 19.5 inches. She came out pink and crying with 2 arms and 2 legs. Yea!!! Claire and I just returned from Indianapolis where we spent 5 glorious days visiting them. As you can imagine, it was an incrediable experience for me.
Arielle Mara Engelman
4 days old
Best wishes for a happy and healthy holiday season to everyone!
Claire and I went to Cleveland in early November for a GvHD (Graft vs Host Disease) meeting and then we drove to Indianapolis to visit our oldest son Sam and his wife Meg. The meeting was fantastic! I went to the physician’s track and Claire went to the caregiver’s track. At lunch, everybody got together for a panel question and answer. For me, the talks were research and basic science centered with clinical applications. They included professors and doctors from the NIH, John Hopkins, Seattle Cancer Center, and Cleveland Clinic. Very high-end. I know this is going to sound weird but I was spell-bound, it was so exciting. The progress in understanding and treating GvHD is increasing at a logarithmic pace. I feel so fortunate to be involved with an endeavor that has limitless opportunity for learning and intellectual enrichment. I love learning new things, it’s a blast!
My efforts to start a BMT support group is progressing but slowly. None the less, tomorrow night I’m going to meet with 4 other local allogeneic transplant recipients and brainstorm a bit. In April, I’m giving a talk open to the public on bone marrow transplantation which will include my perspective as a physician and patient at the Dominican’s Katz’s Cancer Center. The most frustrating thing is trying to find out who in Santa Cruz is a BMT recipient. The privacy laws make it very difficult to get that information. If anyone has ideas on how to find and reah out to people, let me know.
So we left Cleveland and drove to Indianapolis. The change of colors was spectacular. A feast for the eyes! Visiting Sam was sweet but not long enough. Our grandchild, ( sex to be learned the old fashioned way) is due to make his/her entrance in the end of December. Our daughter Naomi is working in SF and thrives on city life and Joe, our younger son, is pushing his limits in bicycle jumping and acrobatics. I like the adrenaline rush aspect of the sport but not the potential for crashing.
I’m playing my flute daily and doing fall home and garden maintenance. I feel good. I don’t take this good fortune for granted and every night I achnowledge it. It’s still unclear if and when I’ll be able to go back to work. Possibly next summer or fall but the hitch will be in finding an appropriate part time position locally. As I’ve learned from my transplant experience; be patient, be fearless, be open and …
Best wishes to everyone
Jim
Its been a while since I last wrote and lots of things are happening. I’m in progress for developing a BMT survival and support group locally. I’ve talked to a variety of people and organizations consisting of hospital administrators, national organization, healthcare providers, and fellow patients. It is easy to get overwhelmed by the scope of such a project in that there are so many different needs and ways to go. The devil is in the details and the details are huge so it’s potentially easy for me to spin my wheels and not get anywhere.
So, here are some of my thoughts. I want to interact directly with fellow transplant patients, locally. We have our own idiosyncratic needs that distinguish us from solid organ cancer patients like breast, colon, and prostate. There are overlaps but there are also differences such as GVHD, graft vs host disease. In a way, I feel that I’ve been given a gift, a chance to pursue a new endeavor. Not that what I’ve done up to now has been that bad but I don’t think I’d have taken on some of the emotional, psychological, and spiritual challenges without this occurrence. In talking to fellow transplant recipients, there is a need for an interactive support group. The Katz Cancer Center at Dominican Hospital has offered to be the physical site and I met with the medical CEO at Dominican Hospital who was excited by the prospect and supportive of this venture. I’d like to do a local face to face group as opposed to an internet or phone group. I’m still trying to find out how many of us are in the area so I’m reaching out to the local oncologist and to Stanford which is the regional BMT center. Trying to find out who is a BMT recipient is difficult due to the privacy laws but I’m making progress. I’m also interested in the post transplant medical needs of patients and will be attending an all day conference in November near Cleveland about GVHD and I plan on going to a 4 day meeting this February in Texas. It’s the annual international BMT Tandem Meeting which is for transplant physicians and researchers and looks at all the scientific and medical aspects of Bone Marrow Transplant. For me, this is very exciting to be with the international mover and shakers of the transplant world.
The financial needs of BMT patients are also an issue. I had time to financially prepare but many people don’t have this luxury. Developing fund raising events in Santa Cruz for patients in Santa Cruz could help. A fellow BMT patient was the commodore for the Santa Cruz Yacht Club and there could be the future possibility of having a regata fund raiser.
Although I feel good and have more energy every day, I’m still on immune suppressants and need to be careful. I’m gardening, playing my flute, and trying to keep up on the medical literature. Over the last month, I’ve been volunteering at the local free clinic seeing non infectious people which has been fun. I was a little insecure about my medical competency since I had not seen any patients in over a 1 1/2 years but it’s coming back. There is truth in the adage “Use it or lose it”. With the flu season approaching, I’ll have to stop going to the free clinic pretty soon.
I feel very blessed. I’m thankful in that we’re having our first grandchild in late December and it looks like I’m going to be around.
jimengelman 