By now Niece Amy Lyn’s marrow is making blood for her recipient. We don’t know who she is or where she lives but we hope her family is watching her recover and that they can see the potential for a healthy future for their little girl.
Amy Lyn has recently learned that the rules around donor/recipient communication have changed. She will not get updates on her recipient and will only hear something if her recipient does not survive. No news is good news. She may still request to have her contact information shared with her recipient on the one-year anniversary of the donation/transplant. She will learn the identity of her recipient only if both parties want to make contact.
We like the Nicole-Jeff-Amy Lyn story and so does Dr. Porter. He told Jeff he was going to tell someone about it and to expect a call. Intriguing!
This week at Jeff’s oncology check-up at Penn’s Perelman Center, his blood work was all good! He had the second highest hemoglobin level since his transplant. In fact, Dr. Porter said that Jeff was “by far the healthiest person on this floor today”. This was after three months off of the immunosuppressant. You may recall that Jeff and I had our doubts that it could be done and that Dr. Porter was persistent in his attempts to wean Jeff off completely. Wow. Dr. Porter wants to see Jeff in three months and that’s okay. There is less worry when we know he is monitored regularly.
Other good news: On a trip to Florida, our friend Kathy – host to a regular stream of visiting friends – was unable to remember the sites she showed us when we visited last year. I mentioned a couple of places but Jeff began to recite everything – everything! – we did last year, including the restaurants! It seems his faulty memory for places applies only to those we visited before his transplant.
Jeff and I have had a couple of good conversations lately. Don’t judge; one of them was If-you-die-before-me. The conversation was prompted by a request for Jeff’s help by the Living with Loss group at Gilda’s Club. The women want to know what things they need to regularly check in their homes and they are hoping he can teach them some simple repairs. They’d made a list which Gilda’s Director Beth shared with Jeff after yoga. We saw the women filing out of their meeting as we were leaving yoga and I thought, “There but for the grace of God…” Jeff, too, thought about surviving his spouse and wondered…
In the car on the way home we wondered about this together. I have no sense at all that Jeff will precede me in death – an interesting realization. I no longer rehearse in my head how I would handle situations without Jeff around to help. (When did that change?) Each of us speculated whether we would become more introverted or more extroverted as the surviving spouse. We came to no conclusions and did not spend a lot of time on the question.
Another topic of conversation was the fear of recurrence of disease and how that has changed for each of us. Jeff confessed his fear of a secondary cancer – most recently, if he hiccups! Instead of thinking How-annoying-are-these-hiccups, he thinks I-wonder-if-I-have-stomach-cancer! I, on the other hand, feel more and more as if we can expect his survival to be very long-term. During treatment, transplant and recovery, Jeff seldom worried yet now he thinks, “What next?” A bit of role reversal, it seems. This fits with our marriage/parenting philosophy: we can withstand anything in our marriage, anything as parents so long as we don’t freak-out simultaneously.
Jeff gets by with fewer naps these days due to a busy work schedule and his two days a week with our adorable granddaughters. He does, however, go to bed early and sleeps soundly. He is tolerating his many visits to doctors without too much grumbling – perhaps made easier by good reports (even his pee is purported to be “cleaner” than his doctor’s). There are a couple of upcoming treatments for relatively minor issues and he seems to be accepting those like a “professional patient” should.
We are grateful and hopeful and always, always marveling at the miracle of bone marrow transplantation.
Amy Lyn has recently learned that the rules around donor/recipient communication have changed. She will not get updates on her recipient and will only hear something if her recipient does not survive. No news is good news. She may still request to have her contact information shared with her recipient on the one-year anniversary of the donation/transplant. She will learn the identity of her recipient only if both parties want to make contact.
We like the Nicole-Jeff-Amy Lyn story and so does Dr. Porter. He told Jeff he was going to tell someone about it and to expect a call. Intriguing!
This week at Jeff’s oncology check-up at Penn’s Perelman Center, his blood work was all good! He had the second highest hemoglobin level since his transplant. In fact, Dr. Porter said that Jeff was “by far the healthiest person on this floor today”. This was after three months off of the immunosuppressant. You may recall that Jeff and I had our doubts that it could be done and that Dr. Porter was persistent in his attempts to wean Jeff off completely. Wow. Dr. Porter wants to see Jeff in three months and that’s okay. There is less worry when we know he is monitored regularly.
Other good news: On a trip to Florida, our friend Kathy – host to a regular stream of visiting friends – was unable to remember the sites she showed us when we visited last year. I mentioned a couple of places but Jeff began to recite everything – everything! – we did last year, including the restaurants! It seems his faulty memory for places applies only to those we visited before his transplant.
Jeff and I have had a couple of good conversations lately. Don’t judge; one of them was If-you-die-before-me. The conversation was prompted by a request for Jeff’s help by the Living with Loss group at Gilda’s Club. The women want to know what things they need to regularly check in their homes and they are hoping he can teach them some simple repairs. They’d made a list which Gilda’s Director Beth shared with Jeff after yoga. We saw the women filing out of their meeting as we were leaving yoga and I thought, “There but for the grace of God…” Jeff, too, thought about surviving his spouse and wondered…
In the car on the way home we wondered about this together. I have no sense at all that Jeff will precede me in death – an interesting realization. I no longer rehearse in my head how I would handle situations without Jeff around to help. (When did that change?) Each of us speculated whether we would become more introverted or more extroverted as the surviving spouse. We came to no conclusions and did not spend a lot of time on the question.
Another topic of conversation was the fear of recurrence of disease and how that has changed for each of us. Jeff confessed his fear of a secondary cancer – most recently, if he hiccups! Instead of thinking How-annoying-are-these-hiccups, he thinks I-wonder-if-I-have-stomach-cancer! I, on the other hand, feel more and more as if we can expect his survival to be very long-term. During treatment, transplant and recovery, Jeff seldom worried yet now he thinks, “What next?” A bit of role reversal, it seems. This fits with our marriage/parenting philosophy: we can withstand anything in our marriage, anything as parents so long as we don’t freak-out simultaneously.
Jeff gets by with fewer naps these days due to a busy work schedule and his two days a week with our adorable granddaughters. He does, however, go to bed early and sleeps soundly. He is tolerating his many visits to doctors without too much grumbling – perhaps made easier by good reports (even his pee is purported to be “cleaner” than his doctor’s). There are a couple of upcoming treatments for relatively minor issues and he seems to be accepting those like a “professional patient” should.
We are grateful and hopeful and always, always marveling at the miracle of bone marrow transplantation.
1 comment:
What a wonderful report! Have a very happy Easter--Christ is risen, our ultimate Hope for the future.
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