The Light At the End Of this Tunnel
Two days after a spectacular night when every thing seemed to go wrong, Harvey is feeling better. The fever is gone, as also the vomiting. Diarrhea is trending down but not quite done with. I am sure all of us have been amused by dogs going round and round, chasing their own tails. The faster they go, the harder it becomes to get at the precise spot that is itching. It is sort of like that. Every drug given to the transplant patient causes some unwanted side effects, which need some additional drugs, which cause more side effects and so it goes. My next post will be all about antibiotics and a nasty bug called c. Difficile.
Today Harvey’s blood counts were anything but normal. For the first time in his life, his ALC (absolute lymphocyte count) is down to zero. As in zip, none, nada. Also for the first time in his life, his hemoglobin level is below the formal definition of anemic, at 9.5. Platelets have dived to 35. All of this would have been scary as heck in a “normal” CLL patient, but not in a patient going through transplant preconditioning. As we said in earlier post, many of the drugs used (ATG, F and C) are “dirty” drugs in the sense that they target many different cell lines. The CBC results are to be expected, and therefore not as scary.
Tomorrow is reserved for full body radiation. At 200 cGy, we are talking about a relatively low dose. As a comparison, full myeloablative transplants use much higher dosage of radiation – as high as 2GY (or 2,000 cGY). I am told most patients tolerate the 200 cGY radiation very well, nothing more than mild fatigue is expected as a side effect. But it will do its job of killing quite a bit of the remaining bits of Harvey’s immune system, cleaning house as it were, before the new graft comes in on March 26th. Harvey was disappointed to hear that post radiation his pee is not going to glow or anything cool like that, but that yes, he will set off airport detectors for the next few days if he tried to cut and run.
It is hard to exercise when one is hooked up to an infusion pole carrying more plastic bags than seems reasonable. The tanking hemoglobin and red blood cell counts also make it hard to get going. For the first time yesterday Harvey got on the treadmill in his room, walked for about a mile at a sedate pace. It was hard for me watching him struggle at this slow pace, having seen him jog and sprint at a pretty hefty clip back home. I doubt he would have managed to do even this amount of exercise, but for his will power and regular training in previous years. All the docs here really encourage patients to get out of bed and exercise to the level that they are able. Did you know that one of the risks of staying in bed all day is decreased lung function and possible pneumonia? Use it or lose it. Your heart and lungs need regular use to keep their muscle tone.
There was an awkward moment yesterday. The way things are organized here, the regular bone marrow team doctors are around Monday through Saturday. On Sundays some of the work load is farmed off to a “moonlighter” doctor coming in from one of the other hospitals in the city. Harvey was visited by the moonlighter doc doing his rounds yesterday. Nothing wrong with that. But as the doc bent over Harvey’s bed to listen to his heart and palpitate his belly, I could not help but notice his white doctor’s coat was anything but white, parts of it were positively grimy and filthy.
The BMT staff and visiting family members go to great deal of trouble to protect the patients from germs that can be lethal to our guys in their terribly immune depleted state. We are positively religious about washing and sanitizing our hands before we enter the rooms, make sure our winter coats and winter gear is stowed away in lockers outside before entering. I change my shoes so that I do not bring in the germy outside stuff into the patient’s room.
It annoyed the heck out of me that this guy was willing to sabotage the whole team effort with his dirty lab coat. If he is not professional enough in his personal grooming, how can I trust him in other aspects of his hygiene? Did he wash his hands after he visited his previous patient and before he entered Harvey’s room? It was at the tip of my tongue to tell him I would rather he did not examine Harvey. I should have and I kicked myself later for not having the guts to do it. But cultural conditioning so so strong. None of us feel comfortable coming right out and telling a doctor like this to take a hike. But I did do other patients a favor by bringing my observation to the attention of the nurse. I hope it traveled up the chain of command and someone in authority spoke to this guy. There is no excuse for this kind of sloppiness.
I am coping. It is not easy, but we all do what we have to do, cope with things when we must. Our apartment is just a couple of blocks away from the hospital. When the weather is nice it takes just a few minutes to walk back and forth. When the Minneapolis “spring” is a little too cold for my taste, or the sidewalks are slippery with new fallen snow, I use the shuttle service. It is available 24/7 and a tremendous service. Argyle House (where we are staying) is clean, functional and comfortable. It is not home, but it will do for now.
Thanks for the good wishes. Harvey and I really appreciate them. It is nice to know we have friends out there rooting for us. We are both well setup with our laptops up and running, so we can be reached by our usual email addresses. Keep in touch!
Be well,
Chaya
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17 comments on "This Too Shall Pass"
Follow-up comment rss or Leave a TrackbackStill pulling for you and admire so much your courage and dedication to the CLL community. I also had bad experiences when put in an isolation ward because of febrile neutropenia. Only the nurses from that ward followed any sanitary protocol…others, like social workers, cafeteria workers, construction workers and even some doctors barged in at all times with all types of filth. Now, going through RF for the second time(just finished cycle 3), I am afraid to tell my clinic if I get a fever over 100.5 for fear they will ask me to go to isolation again. I’d rather ride it out at home where there are less intruders. As for a slow start to spring here in the Twin Cities, we are still excited to hear the cardinals spring song….I guess Minnesotans learn to grasp at straws at a young age! Best wishes, beckmark1
Hi Chaya - I am trying to imagine Harvey walking at 1 mph. Reading your posts is like watching a suspense movie in slow motion. We are all holding our breath, and will be holding it for another 2 to 3 months. Chino.
Chaya, thanks so much for your detailed updates on the transplant procedure. As I may soon be headed in that direction your descriptions are really important to so many of us! Again sending you all the healing energy I can as this brave journey continues. Harvey is a true pioneer in this case and the way he is making this journey will help many of us navigate these mountains and rivers in the future.
Much love to both of you,
Alex
Chaya and Harvey - To those of us possibly facing what Harvey is now experiencing (or at least a similar “adventure”), I thank you from the bottom of my heart. So much of what I fear about this stupid CLL is the unknown, and getting knowledge and information from those who have already paved the way is such a great relief. My thoughts and prayers are with you both (and perhaps with the rent-a-doc . . . because he’ll definitely need prayer if he doesn’t literally clean up his act).
Thank you so much! God bless,
Jenn
Dear Chaya and Harvey,
First, let me say that my prayers are with you in every moment of this journey. From what you write, I sense that despite the exquisite anxiety every unknown moment brings during this time, there is the knowledge that you both now have hope.
You hit the nail on the head about the doc with the dirty white coat. It is simply not acceptable, and I hope you take the bull by the horn and tell Harvey’s doctor about it. Chaya, it is one worry that neither of you should have to endure.
Please know that I genuinely appreciate the enormous effort you put into sharing your vast knowledge and experiences with those of us who have CLL. Your wisdom has lightened my own journey. And for that you have my heartfelt appreciation and thanks.
May the worst be history, and may the future be filled with many years of all good things. God Bless You Both with good health into a very old age.
I am now finding that I am hooked on checking on each installment of this story. Thanks for sharing with such candor.
I, too, am horrified to think about the doctor with the dirty lab coat.
Liz
Chaya,
You are so correct in the fact that we are conditioned to not make waves with Drs. sometimes. The dirty white coat symbolizes so much more. Just frustrating to hear of this kind of absent mindness of some in the profession. I think it is wonderful that Harvey even got on the treadmill. Small steps. I know it can be overwheming emotionally and physically while going through this. Thank you for sharing.
Jlou
Wishing you both all the best, from a beautifully warm spring day here in Spain! I want to thank you for helping us through our first year of CLL and hope Harvey’s journey is totally successful.
Our thoughts & prayers are with you as you continue this journey - knowing Harvey going so slowly on the treadmill is tough vision, but the fact that he is up & doing it is wonderful. Your strength & his tenacity will see you through this time. Sorry to hear about the dirty coat, but I do hope that the nurses did something about it. Amazing with everyone’s fastidiousness to cleanliness around there that it happened at all.
Much love - Anne & Alan
Been so busy lately that I only just got round to reading about this. My thoughts and prayers are with you at this moment.
Terry
Hi Chaya: Good luck to Harvey with tomorrow’s birthday!! On the doctor’s dirty coat: When my niece was in the hospital getting chemo, my daughter, who was with her, actually told one of the residents who started coughing, that he should just stay out. He said they were allergies, but she was adamant and kept him out,I think.I say, NO ONE should feel hesitant when it comes to possible serious consequences.
Good luck to Harvey and you and your family.
Urmila
Hi Chaya and Harvey, let me had to the many thought, prayers, and good wishes. You guys have touched our lives in so many ways over the past years and your journey is also our journey. Many of us know that the journey Harvey is taking now is also one we will be on not long from now. God Bless us all, Paul
Well, today is the big day! I doubt if any one Cll patient has been as well-prepared for a SCT than you have, Harvey-emotionally, intellectually, and practically. And I am sure that there has never been a stronger and medically savvy Cll team than you and Chaya to face this life-altering procedure. And with all the energy and dedication that have brought you to this point, well, luck is definitely on your side. So Vera and I are expecting the best of all possible outcomes! You deserve the best. And the blow-by-blow detailed daily accounts of your treatment experience are priceless. It allows us to be with you, in an important way that is very uplifting. Chip & Vera
Today is the big day. You two are the trailblazers for the rest of us out here. We are all praying for you, and while we have never met, does not mean that we are not all conncected. I want so much for you a successful new life. You are not alone. All of us out here, all care about you both. Thank you for sharing your information because it is so important to the rest of us.
Dear Chaya and Harvey,
You two are models for not giving CLL an inch without a battle; exercise, diet, green tea, vitamin D—plus careful research as to the very best out there for treatment choices. And, perhaps, most important of all, the attitude of “never, never, never ever give up!”
I am a senior watch and wait-er (6 yrs in Aug) and continue to be thankful for that. I find comfort and a world of information in CLL Topics; your very generous gift to all of us. It helps in dealing with the mind games CLL seems to like to play, knowing what can be done now to beat it back and what can be done should the need arise down the road.
My healing thoughts and prayers continue to be with you as you move toward a full and complete cure.
Dear Harvey & Chaya:
You have been a non-stop presence in our minds. I can relate to feeling conflicted about about the dirty doc. Some of them are like angels…and some more like the sham-artist “Wizard” behind the curtain. Who needs additional pitfalls? I am so impressed with Harvey’s determination on the treadmill. As as personal trainer, its inspiring to hear such committemnt - I hear enough excuses from lazy clients. Stay strong!
Love Barb & Blair
Chaya,
I faced the same conditions on several occasions at the Mayo with regard to cleanliness. In both cases I spoke to a supervisor. In my case I was thanked profusely and my comments made a difference. Lives are at stake here and speaking up is difficult but necessary.