Serious Stuff
OK, a little bit of serious talk after all the zaniness of the past few weeks. This is, after all, a document of what our life as a family is like with a cancer in our midst. I sometimes hesitate to talk much about it, preferring to relate the more light hearted aspects of our days and usually I have ample material to work with.
But this is also a chronicle of our journey, and with that in mind I need to bring you up to date with some of the physical things that affect how I feel.
Most of you know that I have Non-Hodgkin's Lymphoma. I was diagnosed fourteen years ago as of last Sunday. Fourteen years ago, I had a child who was four and another who was one. I did not know how much time I had to be with them and their mother who was my rock. I often wondered if they would remember me at all.
Those were hard times for my wife and I. So much was unknown. So much fear of what we could not see. Looking back now, things took a much stranger turn than we could have ever envisioned.
Now, I am the sole parent and provider for these two children who are eighteen and fifteen respectively. This fact makes my future stand out even more so, or so it seems to me.
As many of you know that I have NHL, you will also know that over the past fourteen years I have tried and exhausted the benefits of all but the most horrific treatments for my particular disease. It was with that in mind that I visited the Mayo Clinic last winter and was accepted into a phase II study for a drug called RAD001. I have been taking that drug every day up until last Thursday when I made my monthly visit to the Mayo for a routine checkup.
The results of my blood workup on that day showed that the vital measurements of my blood were now too low to continue the study. I will have another blood draw done this Thursday to see if they have come up after a week without the drug. If they have, I will continue the study at half dose until my counts come up further.
This in itself is not all that worrying. Other signs are more ominous. I am experiencing night sweats again. This is a classic symptom of NHL. It is symptomatic for a lot of other things too, but for me, they have always been a sign that the lymphoma is once again on the move. This alone is not a confirmation of that however, so I try to put my fears back in the box until we do another CT scan. It's a tough genie to try to stuff back into the bottle however and dealing with fears such as this goes right to the core of living with cancer. You must do everything you can to resist the relentless pull of the disease, to not give up, to keep searching for the positive, to celebrate the living.
I am not always successful, but I try.
I can't remember if I have written much about this next bit of physical decrepitude (I seem to be falling apart all at once), but I have been suffering from a pinched nerve in my neck that has been giving me symptoms that mostly affect my left arm and hand. This is a re-occurrence of a problem that first reared its head back in 2000. At that time I had an MRI of the neck and an electrical analysis of the nerves and muscles of my left arm and hand (the Saigon Torture Test).
The results showed a pinched nerve in my neck that services the left arm and hand, but no damage to either nerves or muscles. Physical therapy was proscribed and that successfully treated the condition until last fall.
At that time, I started getting the same symptoms as before, tingling and numbness of the arm and hand. We tried PT again, but it did not relieve the symptoms. Over time they got worse until I was having pain and weakness in my left hand - specifically the middle finger and thumb. This is not an insignificant problem because I am left-handed. This is made a little weirder by the condition of "trigger-finger" that is affecting my thumb.
I finally went to the doctor about it. We had discussed the problem before, but had to revisit it in light of the new, more severe symptoms. I was scheduled for another MRI and STT (or EMR in polite medical terms). I have now had both, and while I have not seen the official write up of the EMR, the doctor who was doing the torture said that it looked like carpal tunnel to him rather than a problem caused by the pinched nerve in the neck. This was good news because the surgical option for carpal tunnel is a whole lot easier than the one for a nerve problem in the neck.
So, the next thing I have to do with the hand issue is meet with a hand surgeon specialist and get his or her take on my situation. It could be that there will be two of us trying to recover from surgery this summer in this house. Oh joy.
So there you have it. A brief medical update. I'll let you know if the situation changes and you can ride alone in the co-pilot's seat.
But this is also a chronicle of our journey, and with that in mind I need to bring you up to date with some of the physical things that affect how I feel.
Most of you know that I have Non-Hodgkin's Lymphoma. I was diagnosed fourteen years ago as of last Sunday. Fourteen years ago, I had a child who was four and another who was one. I did not know how much time I had to be with them and their mother who was my rock. I often wondered if they would remember me at all.
Those were hard times for my wife and I. So much was unknown. So much fear of what we could not see. Looking back now, things took a much stranger turn than we could have ever envisioned.
Now, I am the sole parent and provider for these two children who are eighteen and fifteen respectively. This fact makes my future stand out even more so, or so it seems to me.
As many of you know that I have NHL, you will also know that over the past fourteen years I have tried and exhausted the benefits of all but the most horrific treatments for my particular disease. It was with that in mind that I visited the Mayo Clinic last winter and was accepted into a phase II study for a drug called RAD001. I have been taking that drug every day up until last Thursday when I made my monthly visit to the Mayo for a routine checkup.
The results of my blood workup on that day showed that the vital measurements of my blood were now too low to continue the study. I will have another blood draw done this Thursday to see if they have come up after a week without the drug. If they have, I will continue the study at half dose until my counts come up further.
This in itself is not all that worrying. Other signs are more ominous. I am experiencing night sweats again. This is a classic symptom of NHL. It is symptomatic for a lot of other things too, but for me, they have always been a sign that the lymphoma is once again on the move. This alone is not a confirmation of that however, so I try to put my fears back in the box until we do another CT scan. It's a tough genie to try to stuff back into the bottle however and dealing with fears such as this goes right to the core of living with cancer. You must do everything you can to resist the relentless pull of the disease, to not give up, to keep searching for the positive, to celebrate the living.
I am not always successful, but I try.
I can't remember if I have written much about this next bit of physical decrepitude (I seem to be falling apart all at once), but I have been suffering from a pinched nerve in my neck that has been giving me symptoms that mostly affect my left arm and hand. This is a re-occurrence of a problem that first reared its head back in 2000. At that time I had an MRI of the neck and an electrical analysis of the nerves and muscles of my left arm and hand (the Saigon Torture Test).
The results showed a pinched nerve in my neck that services the left arm and hand, but no damage to either nerves or muscles. Physical therapy was proscribed and that successfully treated the condition until last fall.
At that time, I started getting the same symptoms as before, tingling and numbness of the arm and hand. We tried PT again, but it did not relieve the symptoms. Over time they got worse until I was having pain and weakness in my left hand - specifically the middle finger and thumb. This is not an insignificant problem because I am left-handed. This is made a little weirder by the condition of "trigger-finger" that is affecting my thumb.
I finally went to the doctor about it. We had discussed the problem before, but had to revisit it in light of the new, more severe symptoms. I was scheduled for another MRI and STT (or EMR in polite medical terms). I have now had both, and while I have not seen the official write up of the EMR, the doctor who was doing the torture said that it looked like carpal tunnel to him rather than a problem caused by the pinched nerve in the neck. This was good news because the surgical option for carpal tunnel is a whole lot easier than the one for a nerve problem in the neck.
So, the next thing I have to do with the hand issue is meet with a hand surgeon specialist and get his or her take on my situation. It could be that there will be two of us trying to recover from surgery this summer in this house. Oh joy.
So there you have it. A brief medical update. I'll let you know if the situation changes and you can ride alone in the co-pilot's seat.
Copyright ©2003-2007 Phaedrous
posted by Phaedrous at 3:51 PM
7 Comments:
I will be happy to ride along with you, even if it is only to wish you the best of luck and send you best wishes. My mother had surgery for carpal tunnel, and it was wildly successful - her recovery time was also relatively short. Stay positive. <3
thanks for the update. certainly hoping, praying, and sending good vibes that the bloodwork will be what it needs to be for you to continue in the trial. understandably a worry.
as for the carpal tunnel thing...much less scary than neck surgery. It is also among the myriad repairs my surgeon did while reassembling my demolished arm. of all the stuff they did that was the most minor. given what a train wreck they said I was they wouldn't guarantee how much use i'd regain. happy ending to that story, as you know, so I hope that is some encouragement to you. again, sending all my best for a positive outcome there as well.
I found you through another blogger. Read back all the way to the beginning of your blog entries and have been reading you for a while now but not commenting. You are truly an inspiration and thank you for sharing your experiences. I am crossing my fingers so to speak, that you will have some positive news in the upcoming weeks.
Keeping good thoughts for you.
I thank you for the update my friend. I will be keeping you in my thoughts. Stay sunny even through cloud cover~
If you get stuck down here you know I'll be happy to ride along and sneak in the beer if need be.
I'm up in Duluth this weekend. Gotta save all those crazy runner's that decide to run that insane distance! If you are around on Saturday night up there, give me a buzz. My sister, aunt, and I will be hanging out up on the hill.
Thanks everyone for the support and the wonderful comments. I truly appreciate it.
Moose, wish I could take you up on the get together, but I have to head south again later today. I would love to stay for the race. I worked the finish line for several years and there is nothing like the contact high you pick up from the runners as they cross the finish line. Enjoy.
P.
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