I complained when I had no shoes. Then I met a man with no feet!
Not that I have been complaining, mind you. But everyday, I realize how fortunate I have been when I continue to hear stories of what has befallen other people that have been battling leukemia as well. On Thursday, during my photophoresis treatment(the 3rd and last for the week), one of the nurses told me of a patient who suffered from such severe dry eye that he could not even open his eyes! Also, the fellow across from me told us that he was Anthem's most expensive patient last year. He racked up a total of 1.6 million dollars in medical expenses! I never came close to that. That's not an honor that any of us would wish to have.
The remaining two photophoresis treatments went without incident other than the attendant boredom of lying there for 2 and a half hours. Likewise the commute in and out of Boston is horrendous especially during afternoon rush hour. On Thursday we left at 10:15 in the morning and did not get home until 6:15! Combatting traffic and a downpour made for a lengthy ride home. There's something to be said for a helicopter! Maybe Medicare will add it to the list of covered benefits.
Next week starts the easy(!) two day a week trips for a measly eleven weeks. As much as I would like to see this portion of the treatment come to an end, at the same time I don't want to wish the summer away.
I spoke to my mother today and she is in great spirits! She went grocery shopping today for the first time without needing a cane or any assistance whatsoever.
Not much else to say as a beautiful weekend approaches.
All I know is that I have been very lucky...
Bob
June 6, 2011 11:50 PM
From beyond the grave!
That's right! On Saturday night, a friend received a text message from another friend who has relocated to North Carolina asking for an immediate phone call. The local friend did so and responded to the news that, at a party in North Carolina, our friend heard from someone who used to live in our condo complaex and has since relocated to the area that I had died! If so, then death was certianly not very traumatic for me nor is heaven the paradise that I hear about every Sunday at church. Also, amazingly, all my current friends and acquaintances have passed away with me making the journey to the next life very transparent!
My death notwithstanding, today marked the first day of my photoporesis procedures. There really is not a lot to write about. All you do is lie there, they stick a needle into your arm, run your blood through a machine that spins and separates the components, treat the white blood cells with ultraviolet light and return the whole deal back to you. The problem is that it is a lengthy process(over 2 hours) requiring that you do not visit a rest room for that period of time. Today was a non-issue for me - we'll see what tomorrow brings. Also, you cannot move the arm that has the needle in it. being one handed greatly limits what you can do. So it is most assuredly a very boring time.
Now, the big question(s)! How does it work and what does it do to make things better? The answer is... They really don't know the answer. All they know is that they have employed tis procedure since the seventies and it has met with a lot of success.
As you can imagine, with others being treated as well, you swap war stories. Once again, I have come to realize how lucky I have been. A younger man was next me who was diagnosed just two weeks after his daughter was born - four years ago. He suffered tremendously with graft versus host disease especially with scleroderma(hardening of the skin and skin sores). Today he can barely walk and must ride a scooter - though the photophoresis treatments seem to be making some improvement. His GVHD was enough that they have him on a 400mg daily dosage of prednisone! Mine is 20. With all that prednisone, he has gained one hundred pounds and has swollen up excessively. None of these things have befallen me.
We also got our appointment schedule for the next 11 weeks - every Wednesday and Thursday at 8:00. This requires a 5:15 arising time. Ugh! But. as with all things, you do what you have to do.
The status is now - one down, many to go...
Bob
That's right! On Saturday night, a friend received a text message from another friend who has relocated to North Carolina asking for an immediate phone call. The local friend did so and responded to the news that, at a party in North Carolina, our friend heard from someone who used to live in our condo complaex and has since relocated to the area that I had died! If so, then death was certianly not very traumatic for me nor is heaven the paradise that I hear about every Sunday at church. Also, amazingly, all my current friends and acquaintances have passed away with me making the journey to the next life very transparent!
My death notwithstanding, today marked the first day of my photoporesis procedures. There really is not a lot to write about. All you do is lie there, they stick a needle into your arm, run your blood through a machine that spins and separates the components, treat the white blood cells with ultraviolet light and return the whole deal back to you. The problem is that it is a lengthy process(over 2 hours) requiring that you do not visit a rest room for that period of time. Today was a non-issue for me - we'll see what tomorrow brings. Also, you cannot move the arm that has the needle in it. being one handed greatly limits what you can do. So it is most assuredly a very boring time.
Now, the big question(s)! How does it work and what does it do to make things better? The answer is... They really don't know the answer. All they know is that they have employed tis procedure since the seventies and it has met with a lot of success.
As you can imagine, with others being treated as well, you swap war stories. Once again, I have come to realize how lucky I have been. A younger man was next me who was diagnosed just two weeks after his daughter was born - four years ago. He suffered tremendously with graft versus host disease especially with scleroderma(hardening of the skin and skin sores). Today he can barely walk and must ride a scooter - though the photophoresis treatments seem to be making some improvement. His GVHD was enough that they have him on a 400mg daily dosage of prednisone! Mine is 20. With all that prednisone, he has gained one hundred pounds and has swollen up excessively. None of these things have befallen me.
We also got our appointment schedule for the next 11 weeks - every Wednesday and Thursday at 8:00. This requires a 5:15 arising time. Ugh! But. as with all things, you do what you have to do.
The status is now - one down, many to go...
Bob
June 5, 2011 12:45 Am
Be prepared!
That's the Boy Scout motto and also the creed for us photophoresis patients.It's not just showing up for the treatments that is required. We have to go easy on the fats and/or carbs the day before and, most of all, no alcohol! Since I go Monday, Tuesday, and Thursday this week - that kind of sets the tone for not just Sunday but for every day through Wednesday. Hey, it's no big deal. I didn't havealcohol for eight months two years ago and all I have to do is not overdose on the fats - not eliminate them.
Saturday marked an epic day for myself and a friend of mine. It was his birthday! Hey, all of us who are still alive celebrate them - so that's no big deal! However, without revealing how young we are, we have now known each other for 60 years! We don't have any other friends who can attest to having known someone (other than relatives) for the length of time. We do see friends that my wife has known for 50 years. In fact, we'll see them on Friday. But 50 is not 60!
Otherwise, things are on hold regarding the contact lenses for my eyes while they research what my insurance will cover. It's funny, but taking my blood, treating it, and recycling it through my body does not bother me in the least. But, putting lenses in my eyes fills me with fear and trepidation! I just don't like shoving things into my eyes even though I fill them with all kinds of goop every day.
As I said before, I have some good days and some days that are not quite as good when it comes to my eyes. I think that the bright sun has something to do with it. As long as I wear sunglasses, I seem to be OK. But, if not, then they start to burn a bit. So I do have to be careful this time of year as the sun is the most intense that it will be. Even so, I really do enjoy the warm weather. I no longer find much redeeming value in winter.
I do, however, find redeeming value in life.
And I plan on maintaining it as long as I can...
Bob
That's the Boy Scout motto and also the creed for us photophoresis patients.It's not just showing up for the treatments that is required. We have to go easy on the fats and/or carbs the day before and, most of all, no alcohol! Since I go Monday, Tuesday, and Thursday this week - that kind of sets the tone for not just Sunday but for every day through Wednesday. Hey, it's no big deal. I didn't havealcohol for eight months two years ago and all I have to do is not overdose on the fats - not eliminate them.
Saturday marked an epic day for myself and a friend of mine. It was his birthday! Hey, all of us who are still alive celebrate them - so that's no big deal! However, without revealing how young we are, we have now known each other for 60 years! We don't have any other friends who can attest to having known someone (other than relatives) for the length of time. We do see friends that my wife has known for 50 years. In fact, we'll see them on Friday. But 50 is not 60!
Otherwise, things are on hold regarding the contact lenses for my eyes while they research what my insurance will cover. It's funny, but taking my blood, treating it, and recycling it through my body does not bother me in the least. But, putting lenses in my eyes fills me with fear and trepidation! I just don't like shoving things into my eyes even though I fill them with all kinds of goop every day.
As I said before, I have some good days and some days that are not quite as good when it comes to my eyes. I think that the bright sun has something to do with it. As long as I wear sunglasses, I seem to be OK. But, if not, then they start to burn a bit. So I do have to be careful this time of year as the sun is the most intense that it will be. Even so, I really do enjoy the warm weather. I no longer find much redeeming value in winter.
I do, however, find redeeming value in life.
And I plan on maintaining it as long as I can...
Bob
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