John and I are back from Hershey Medical Center and wanted to share the extremely good news with you.
John's cancer is not back. been living with 30% kidney function for a year or so anyway. But that's okay, because you have to get down to 15% kidney function before you have to go on dialysis.
Also, his kidney damage that he had sustained, in the past few weeks, is most likely reversible.
The kidney damage was due to a medicine called Sirolimous, but the medicine is not that potent, and the damage should be reversible, once John stops taking it.
John will still only have about 30 percent kidney function after he stops the Siro medication. John's
That is what John's local nephrologist (John's kidney doctor, Dr. Donelan) told John recently, anyway. That he would wait until John's kidney function dropped to only 15 percent before putting him on dialysis. So IF John ever has to go on dialysis, it won't be for awhile.
Dr. Donelan insists John will have to be on dialysis in four to 20 years, but he doesn't know John, LOL. Maybe John can avoid dialysis altogether in his lifetime. Because he is stubborn, and he has great tenacity, and he has the Lord.
Anyway, Dr. Claxton is taking John off the Siro, the culprit of John's serious kidney trouble as of late. Within three weeks, John will be off all anti-rejection drugs. The reason John was taking these drugs in the first place was to suppress his immune system, so that he wouldn't reject his donor cells (that he received from his bone marrow transplant), or rather so his donor wouldn't reject him. John will be off both the Tachro and the Siro anti-rejection meds by three weeks from now. And John shouldn't reject his donor at that time because he has been doing so well.
been living with 30% kidney function for a year or so anyway. But that's okay, because you have to get down to 15% kidney function before you have to go on dialysis.
So what I am trying to say is that John's kidneys should improve, as he will no longer be on the Sirolimous.
One more thing. Dr. Claxton is very pleased with John's weight. He just wants him to walk. And go swimming. He mentioned that we should do it together. Yes, I need to lose weight and get in better shape also. John is allowed to go swimming for the first time in two and a half years! Praise God for that!
So anyway, overall, Dr. Claxton is THRILLED with John's progress. For two and a half years John is doing great!
Oh, just one more thing. After Dr. Claxton mentioned how great John was doing, he told John he had too much iron from the blood transfusions he has had (over 100 of them). This iron overload has caused John too have too much iron in his blood. This was indicated by a high Ferritin level score. A man should have a score of close to 300, he has a score of close to 3,000. High iron like that may very easily cause liver and pancreas damage, and can also cause diabetes.
Dr. Claxton is going to give John a new med to reduce the high Ferritin score and get rid of the extra iron in his body, if John's insurance company agrees to pay for the medication. The new medication costs a couple of thousand a month, at least.
We went to Dr. Ford (John's local oncologist) yesterday, and he said he was concerned about Dr. Claxton giving this med to John. Because it could damage John's kidneys even further. It would clear up the problem of John's liver being damaged, and his pancreas, and John getting diabetes - but it would further damage John's kidneys. Sigh...
So overall, we have a very good report here, but with some complications to deal with in the future. John and I will just take things one day at a time, and be thankful John is alive and doing well today!
Okay, so it is a pretty good report. But at the same time, there's something I am still having trouble dealing with. Most of those who had a bone marrow transplant (stem cell transplant) when John had his, have since passed away. John and I are still wondering why he is doing so well, and they died. It's hard. I know, you probably want to tell me, "Well stop questioning it and just enjoy it." But it is not that easy.
We see something that reminds us of a particular person we had been close to, like hear a song they liked to listen to during chemo, and then we have a real hard time. I hear the Bee Gees and think of Kay. She was my best friend at Hope Lodge. She was loads of fun, and in her late 60s. I see Angus Burgers in the supermarket and think of Rex. I can remember so many others also, so many who didn't make it. And now so many things cause me so many memories and flashbacks. John gets very quiet at times, I just start to quietly cry. I don't know.
I am trying to celebrate the person, not concentrate on the end of their life, but it is still hard. And I guess there is the survivor's guilt. Maybe it's not even Survivor's Guilt. Maybe I am going through some Post Traumatic Stress. It has been two and a half years on this road. Maybe I am just a little bit sad. I think I am entitled. I hope it doesn't get out of hand, and ends soon...
Okay, this entry is getting too long! I just wanted to let you know how things were going with John.
I love you all,