Here's my list of things that I monitor:
- White blood cell/platelets/immune system counts: about 40% of baseline and continuing to improve
- Hair loss has stopped. No need to get a haircut or shave, but I still have my eyebrows. ;<)
- Walking. Have gone beyond up and down the street and now making 3 block walks.
- Sleeping. In bed longer and sleeping deeper. Still can not get a solid sleep all night.
- Line catheter. Taken out yesterday. I did not realize how long it was, like 12 inches. It ran from my jugular to the heart. Wow!
- GI tract. According to the docs, it will take several weeks after I return to baseline. Oh, well.
- Driving. Not yet.
- Chores. Able to do more around apartment to be self-sufficient.
- Anemia. Still pretty weak in terms of having energy. It's a good thing that no one is depending on me.
- Cleo, the dog. Can't take her back yet. Not strong enough or having sufficient energy.
It's now six days since I was discharged.
Friday, July 29, 2011
Tuesday, July 26, 2011
Moving Forward
It's the small things.
Today I did some chores around the apartment: laundry and some cleaning. It's a sign of taking back your life.
I've been very grateful to the folks who have come to my place to walk with me in the mornings and evenings in order to get my exercise in.
The big event was my return to the Bone Marrow Transplant Unit at Strong for my initial follow-up upon discharge.
Twice I choked up there. First when I was outside the unit door and second when I saw my room. Spending 17 days in a place, getting away from it and then having to return evokes powerful feelings. I tried to explain to my brother what it meant to face those experiences again, but how can one? They are personal and based on an individual set of conditions; they are not a collective experience.
The good news is that the follow-up went well. I've a very long road, but the first tentative steps of recovery are complete. Every week will bring improvement, and that is how it is for everyone.
So be it.
Today I did some chores around the apartment: laundry and some cleaning. It's a sign of taking back your life.
I've been very grateful to the folks who have come to my place to walk with me in the mornings and evenings in order to get my exercise in.
The big event was my return to the Bone Marrow Transplant Unit at Strong for my initial follow-up upon discharge.
Twice I choked up there. First when I was outside the unit door and second when I saw my room. Spending 17 days in a place, getting away from it and then having to return evokes powerful feelings. I tried to explain to my brother what it meant to face those experiences again, but how can one? They are personal and based on an individual set of conditions; they are not a collective experience.
The good news is that the follow-up went well. I've a very long road, but the first tentative steps of recovery are complete. Every week will bring improvement, and that is how it is for everyone.
So be it.
Monday, July 25, 2011
Homecoming
It's been two days since my discharge.
The most significant event has been the receipt of my cancer survivor pin. I know that it is early yet, as I have not even had my first post-discharge blood tests and checkup, but I am betting the entire ante and drawing to the inside straight. Myeloma survivors have a magenta color, and I must admit that I like the look of my pin. The important thing is not to stick myself as I still don't have full blood clotting. :<)
The days are taken up with calling friends and family and having them walk with me up and down my street. I also enjoy sitting on the porch as the weather is nice yet.
I guess I don't have too much to say at this point. Recovery is different from treatment. In any medical situation, recovery always means waiting for the doctor to tell you how you are doing. That's where I am at.
It may be time to focus on something else.
The most significant event has been the receipt of my cancer survivor pin. I know that it is early yet, as I have not even had my first post-discharge blood tests and checkup, but I am betting the entire ante and drawing to the inside straight. Myeloma survivors have a magenta color, and I must admit that I like the look of my pin. The important thing is not to stick myself as I still don't have full blood clotting. :<)
The days are taken up with calling friends and family and having them walk with me up and down my street. I also enjoy sitting on the porch as the weather is nice yet.
I guess I don't have too much to say at this point. Recovery is different from treatment. In any medical situation, recovery always means waiting for the doctor to tell you how you are doing. That's where I am at.
It may be time to focus on something else.
Friday, July 22, 2011
Home Coming
I've such a tumult of emotional ins and outs now because of some wonderful news.
The doctors have cleared me to check out tomorrow morning. I am going home.
One more step on this journey is complete. It is time for me to move from the ?comfort? of the hospital with 24 hour care and supervision, freeing me from worrying about handling my own needs to my home where I will once again have to assume the responsibility for dressing and feeding and self-care.
I'm ready for the challenge, but it will take inner strength to get thru this next step.
When I was a heavy-duty jogger, the thrill of the run was never the start. The elation came when I broke thru the "runners wall" and achieved that physical state of just being able to keep going, without a concentrated effort over the body. The running just continued to happen.
Tomorrow I will approach that runner's wall. It is still in the distance but I believe that the day is coming when I will pick up the pieces and move seamlessly back to a normal life.
;<) The doctors say "in about six months".
The doctors have cleared me to check out tomorrow morning. I am going home.
One more step on this journey is complete. It is time for me to move from the ?comfort? of the hospital with 24 hour care and supervision, freeing me from worrying about handling my own needs to my home where I will once again have to assume the responsibility for dressing and feeding and self-care.
I'm ready for the challenge, but it will take inner strength to get thru this next step.
When I was a heavy-duty jogger, the thrill of the run was never the start. The elation came when I broke thru the "runners wall" and achieved that physical state of just being able to keep going, without a concentrated effort over the body. The running just continued to happen.
Tomorrow I will approach that runner's wall. It is still in the distance but I believe that the day is coming when I will pick up the pieces and move seamlessly back to a normal life.
;<) The doctors say "in about six months".
Wednesday, July 20, 2011
Stepping Back From the White Light
At the end of a transfusion, I went into anaphalatic shock. It was the scariest feeling: uncontrollable tremors and restricted breathing.
The worst part was lying in the bed, wired up to a breathing device, being force-pumped steriods and god-knows-what-else, and monitoring devices beeping in the background.
As my breathing became more labored, there came a 2-minute period where I came to believe that I was not going to make it. With doctors and nurses surrounding my bed, my thoughts drifted to my son and his family, my family and friends. For that brief period, I believed that I would not see them again.
It was most upsetting.
There came a point in time when I could breath a little easier, and all of a sudden things were not so bleak, but it made me realize how fragile one is. I know that I have much to reflect on when I get out of here. It's been 2 weeks already.
On a positive note, my counts came back this morning and they were higher, which is good because it means the tranfused stem cells are differentiating into the needed parts.
The worst part was lying in the bed, wired up to a breathing device, being force-pumped steriods and god-knows-what-else, and monitoring devices beeping in the background.
As my breathing became more labored, there came a 2-minute period where I came to believe that I was not going to make it. With doctors and nurses surrounding my bed, my thoughts drifted to my son and his family, my family and friends. For that brief period, I believed that I would not see them again.
It was most upsetting.
There came a point in time when I could breath a little easier, and all of a sudden things were not so bleak, but it made me realize how fragile one is. I know that I have much to reflect on when I get out of here. It's been 2 weeks already.
On a positive note, my counts came back this morning and they were higher, which is good because it means the tranfused stem cells are differentiating into the needed parts.
Thursday, July 14, 2011
The Ups and Downs
One of the things about chemo is that it is not a linear ride, but more like a roller-coaster. Yesterday was awful as I was learning to ask for more and more anti-nausea drugs. Today was better as I pro-actively took the drugs before I really needed them. One result was the ability to eat more protein and even some vegetables.
My counts of interest are down to 10% of what they were when I checked into Strong one week ago for the chemo shot. According to the doctors, I need about 3 more days to bottom out and at that point all the damaged white blood cells, platelets and ANCs will be dead, while the infused stem cells will have reached the marrow and will be differenting into the needed components.
Still got my hair! Sooner or later it has got to go. Just waiting on a good moment.
Thanks to all the visitors who have stopped by. It made a difference from being inside my room for the past week.
I don't know what else to post right now. It is time for a walk up and down the hallway to get the blood moving and keep the muscles exercised.
================================================
You always have to re-read and re-read to take in all this info.
Stem cells differentiate into many things, one of which is B cells. Myeloma affects the B-cells and keeps them from forming anti-bodies. Instead they become cancerous and crowd out other cells.
- In myeloma, stem cells are not cancerous. They are still good. The harvesting of the stem cells does not require that they be treated with any cancer killer.
- The melphalan kills the cancerous cells and many other cells.
- The infused stem cells which never had cancer differentiate and replace the killed cells.
Stem cell transplant does not cure POEMS Symdrome or myeloma. It resets the action in the bone marrow by essentially rebooting the system. The best analogy that I can come up with is what the computer technician does when your system is hopelessly infected. They re-install the operating system.
The hope is the cause of the myeloma goes away, but there is no guarantee. It is best hoped that the patient adds years of a qualitive life.
Or to extend the computer analogy, that the system runs well until it becomes infected again.
Interesting ...
My counts of interest are down to 10% of what they were when I checked into Strong one week ago for the chemo shot. According to the doctors, I need about 3 more days to bottom out and at that point all the damaged white blood cells, platelets and ANCs will be dead, while the infused stem cells will have reached the marrow and will be differenting into the needed components.
Still got my hair! Sooner or later it has got to go. Just waiting on a good moment.
Thanks to all the visitors who have stopped by. It made a difference from being inside my room for the past week.
I don't know what else to post right now. It is time for a walk up and down the hallway to get the blood moving and keep the muscles exercised.
================================================
You always have to re-read and re-read to take in all this info.
Stem cells differentiate into many things, one of which is B cells. Myeloma affects the B-cells and keeps them from forming anti-bodies. Instead they become cancerous and crowd out other cells.
- In myeloma, stem cells are not cancerous. They are still good. The harvesting of the stem cells does not require that they be treated with any cancer killer.
- The melphalan kills the cancerous cells and many other cells.
- The infused stem cells which never had cancer differentiate and replace the killed cells.
Stem cell transplant does not cure POEMS Symdrome or myeloma. It resets the action in the bone marrow by essentially rebooting the system. The best analogy that I can come up with is what the computer technician does when your system is hopelessly infected. They re-install the operating system.
The hope is the cause of the myeloma goes away, but there is no guarantee. It is best hoped that the patient adds years of a qualitive life.
Or to extend the computer analogy, that the system runs well until it becomes infected again.
Interesting ...
Monday, July 11, 2011
Here it comes
This is not going to be a fun post.
The side effects are kicking in. It's not much right now, but it is getting worse. Right now it is dry mouth, a 5 lb weight gain in 5 days (and I'm not eating that much) and an increasing sense of nausea.
The dry mouth does not go away and I've already drunk about a quart of fluids from o.j. to water to ginger ale to milk. I can't find something to keep me from that feeling.
The nausea (as expected) had to come sooner or later. The staff has started to give me a pill to dampen it. They said that it had to happen. Okay, so that's the rule.
I called Mercedes and will do the haircut tonight. Right now, if I don't get the haircut out of the way, I'll be a spotted, half-balding kind of guy in a week with a really ugly look.
Better get that "high-and-tight" now.
On the positive side, Mercedes told me that Lola (my cat) is doing well at her house. She is eating and investigating, spending most of the day outside, which is how she behaves with me. That's good. One worry out of the way.
And Cleo (my dog) is doing well with my brother and sister-in-law. I did not doubt that, but also another worry out of the way.
Well, the die is cast. I "crossed the Rubicon" last Thursday when I checked in to Strong Memorial Hospital to start this process. Not much to do now but to ride it out ...
The side effects are kicking in. It's not much right now, but it is getting worse. Right now it is dry mouth, a 5 lb weight gain in 5 days (and I'm not eating that much) and an increasing sense of nausea.
The dry mouth does not go away and I've already drunk about a quart of fluids from o.j. to water to ginger ale to milk. I can't find something to keep me from that feeling.
The nausea (as expected) had to come sooner or later. The staff has started to give me a pill to dampen it. They said that it had to happen. Okay, so that's the rule.
I called Mercedes and will do the haircut tonight. Right now, if I don't get the haircut out of the way, I'll be a spotted, half-balding kind of guy in a week with a really ugly look.
Better get that "high-and-tight" now.
On the positive side, Mercedes told me that Lola (my cat) is doing well at her house. She is eating and investigating, spending most of the day outside, which is how she behaves with me. That's good. One worry out of the way.
And Cleo (my dog) is doing well with my brother and sister-in-law. I did not doubt that, but also another worry out of the way.
Well, the die is cast. I "crossed the Rubicon" last Thursday when I checked in to Strong Memorial Hospital to start this process. Not much to do now but to ride it out ...
Saturday, July 9, 2011
Friday, July 8, 2011
The Six Million Dollar Man
In a surprisingly relatively easy step, the stem cell infusion occurred today around noon.
The setup was extensive. Lots of preparatory drugs for side effects. The standard stuff: nausea, headache, allergic reaction. The medical stuff: anti-viral, anti-fungal for the dimininished auto-immune system.
But the infusion went quickly and without a hitch. I was loopy for most of it, but it was painless. No surgery. Thank the Lord.
Coming out of it, I ordered a real meal: Chicken noodle soup (what else, of course) and a fruit platter and got it all down which was very different from yesterday.
The two best things that happened today (and they are most mundane): I got to take a walk outside along Crittenden Blvd in the sun, and I got to take a shower.
Yep, things are looking up.
The next major tasks to monitor are: the dropping of my white blood cell count to zero over the next days, and the apperance of the GI track side-effects. Not pleasant to discuss so I won't, but that is why I am still here for the foreseeable future.
I asked why the malphalan does not affect the infused stem cells. The melphalan has an active period of approx 24 hours in which it kills it target cells. It takes days for the "poisoned" cells to clear the system, but the melphalan has done its job. That is why it does not interfere with the cleaned stem cells infused today.
Medicine is so far progressed over even 20 years ago!!
The setup was extensive. Lots of preparatory drugs for side effects. The standard stuff: nausea, headache, allergic reaction. The medical stuff: anti-viral, anti-fungal for the dimininished auto-immune system.
But the infusion went quickly and without a hitch. I was loopy for most of it, but it was painless. No surgery. Thank the Lord.
Coming out of it, I ordered a real meal: Chicken noodle soup (what else, of course) and a fruit platter and got it all down which was very different from yesterday.
The two best things that happened today (and they are most mundane): I got to take a walk outside along Crittenden Blvd in the sun, and I got to take a shower.
Yep, things are looking up.
The next major tasks to monitor are: the dropping of my white blood cell count to zero over the next days, and the apperance of the GI track side-effects. Not pleasant to discuss so I won't, but that is why I am still here for the foreseeable future.
I asked why the malphalan does not affect the infused stem cells. The melphalan has an active period of approx 24 hours in which it kills it target cells. It takes days for the "poisoned" cells to clear the system, but the melphalan has done its job. That is why it does not interfere with the cleaned stem cells infused today.
Medicine is so far progressed over even 20 years ago!!
Thursday, July 7, 2011
It goes by so fast
Amofostine and melphalan went in at 12:15 pm. It took less than 1/2 hour. The chemo injection portion of the treatment is over.
Theoretically all the cancer cells are on the way to extinction. As I understand it, by noon tomorrow, the melphalan will have done its work and killed all the cancerous white blood T-cells. The melphalan will no longer be effective after that which is good because ...
The harvested (and now cleaned ) stem cells are scheduled for insertion into my blood stream tomorrow some time.
It takes several days for two concurrent actions: the cancerous white blood T-cells to purge from my system, and the cleaned stem cells to travel from the blood stream to the bone marrow.
Since the cancerous white blood T-cells will not drop out of my blood stream for several days, there will be multiple monitorings during the day on the current count. Over the next days my white cell count will drop to near zero. (Red blood cell count is not affected.)
Since the harvested stem cells will need several days to travel from the blood stream to the bone marrow, and more days to differentiate into what I need - good white T-cells, this is the critical period where I will be subject to life-threatening infections that any normal person would easily fight off.
Hence the hospitalization for an expected three weeks.
Theoretically all the cancer cells are on the way to extinction. As I understand it, by noon tomorrow, the melphalan will have done its work and killed all the cancerous white blood T-cells. The melphalan will no longer be effective after that which is good because ...
The harvested (and now cleaned ) stem cells are scheduled for insertion into my blood stream tomorrow some time.
It takes several days for two concurrent actions: the cancerous white blood T-cells to purge from my system, and the cleaned stem cells to travel from the blood stream to the bone marrow.
Since the cancerous white blood T-cells will not drop out of my blood stream for several days, there will be multiple monitorings during the day on the current count. Over the next days my white cell count will drop to near zero. (Red blood cell count is not affected.)
Since the harvested stem cells will need several days to travel from the blood stream to the bone marrow, and more days to differentiate into what I need - good white T-cells, this is the critical period where I will be subject to life-threatening infections that any normal person would easily fight off.
Hence the hospitalization for an expected three weeks.
Here We Go! Let's Rock!
Got the call yesterday. A bed is available. Be at the Stem-Cell Transfusion Unit at 8:00 a.m. the next day.
=========
It's the next day and I am checked in. I've got my pressurized room. Had a nice intro by Tracy. I'm unpacked and ready to go. Waiting on orders for the melphalan and amifostine.
Started the ice therapy which is sucking ice chips continuously as a form of cryo treatment for the mouth and throat. The melphalan, in addition to destroying the cancer cells, will also destroy the protective cells of the GI tract. I'm guessing this is going to make me feel miserable, based on what I've read and what I've been told by the medical professionals.
So let's coin a couple of space-adventure themes here:
" To boldly go where no man (or no one) has gone before ... "
" And so it begins, ... " --- Babylon 5
=========
It's the next day and I am checked in. I've got my pressurized room. Had a nice intro by Tracy. I'm unpacked and ready to go. Waiting on orders for the melphalan and amifostine.
Started the ice therapy which is sucking ice chips continuously as a form of cryo treatment for the mouth and throat. The melphalan, in addition to destroying the cancer cells, will also destroy the protective cells of the GI tract. I'm guessing this is going to make me feel miserable, based on what I've read and what I've been told by the medical professionals.
So let's coin a couple of space-adventure themes here:
" To boldly go where no man (or no one) has gone before ... "
" And so it begins, ... " --- Babylon 5
Tuesday, July 5, 2011
So What Is POEMS Syndrome?
This is my understanding by reading various articles. It is not a medically, authoritative article, but is simply how I understand what I have.
Must be present:
Must be present:
- Polyneuropathy
- Monoclonal plasma cell disorder (myeloma)
Strong indicators:
- Sclerotic bone lesions
- Elevated VEGF. Signal protein to create muscle after exercise/new blood vessels.
- Castleman's Disease (non-cancerous tumors in lymph nodes)
- Elevated paraprotein (m-protein)
Possible indicators:
- Endocrinopathy (gynecomastia/ hypothyroid)
- Organomegaly (spenomegaly)
- Papilloedema
-Weight loss > 10 lbs
- Significant fatigue
- Erectile dysfunction
Sunday, July 3, 2011
A Day Without Side Effects
I never thought it would be feel so good to do chores around the house. (Actually that's not true, as anyone who has recovered from a 48-hour flu knows.)
But I have not had the flu in awhile, and yet today, I vacuumed the floor, cleaned the bathroom and kitchen and did some laundry. What amazes me is that I could not or would not do these chores in the previous few days. I had the time. I simply did not have the energy. I had the inclination, but not the will.
Go figure that paradox out.
Chronologically, I completed the apheresis last Tuesday (5 days ago) and am waiting for a bed slot at the transfusion unit. Found out that neupogen is in my future when they inject the melphalan and take my immune system to zero. If one does not know, the neupogen stimulates stem cell production.
Speaking of chores earlier, I've still got to iron clothes (maybe tonight during TV) and I've got to clean the microwave and refrigerator. Such mundane concerns!
But I have not had the flu in awhile, and yet today, I vacuumed the floor, cleaned the bathroom and kitchen and did some laundry. What amazes me is that I could not or would not do these chores in the previous few days. I had the time. I simply did not have the energy. I had the inclination, but not the will.
Go figure that paradox out.
Chronologically, I completed the apheresis last Tuesday (5 days ago) and am waiting for a bed slot at the transfusion unit. Found out that neupogen is in my future when they inject the melphalan and take my immune system to zero. If one does not know, the neupogen stimulates stem cell production.
Speaking of chores earlier, I've still got to iron clothes (maybe tonight during TV) and I've got to clean the microwave and refrigerator. Such mundane concerns!
Subscribe to:
Posts (Atom)