Still Moving Forward

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.

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.

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.

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".

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 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.

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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 ...

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 ...

Some photos

Mom, sister, son, daughter-in-law, granddaughter, grandson,neice and brother

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!!

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.

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.

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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

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:

- 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

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!

Transplant 101

This is the big talk. The transplant doctor sat me down and talked me thru the procedure in detail.

This is less a blog, and more a note to self of some of these that got covered and what I can expect.

Side-effects:
- nausea from the preparatory drug, from the melphalan (cancer-killer)
- mouth sores, tracheal sores, all the GI stuff from the melphalan which does not per say recognize cancer-cells, but instead targets rapidly dividing cells which encompasses both the cancer cells and the cells of the GI tract. The nurse told me that in the days prior to amifostine which ameliorates the side effects, people were absolutely miserable from the GI issues.

Admittance: Right now the bedspace is full, but I can expect 24 - 48 hours notice that the procedure will start. The melphalan is out-patient with admittance the day after. I'm not sure why but I asked if I could get the melphalan in-patient. I think that mentally I would prefer to psychologically feel that the cure is underway and being admitted somehow does that.

Possible outcomes:
I live.
I die.
Diesease goes into complete remission for some unknown number of years.
Diesease goes into partial remission. Would need to try the transplant a second time with the possibility that it works.
No change.

It will be three weeks in-patient pending some outstanding result in terms of blood cell replacement.  Speaking of which, the drug neupogen will be administered again. I had bad side-effects from the first dosages: migraines in particular, and overall general hurting. Time to ramp up the vicodin.

The Realization That Something Is Wrong

"Larry, Are you doing okay?" That was a question that should not have needed asking. The previous winter I was hiking 5 to 6 miles a day thru Monroe County parks in the middle of winter with temperatures below 20 degrees F.  The goal of the hikes was always to make it to that hot chocolate at the end and sit around with good people and laugh and talk and relax after a good afternoon of exercise.

"Are you doing okay?" The problem was that I was not doing okay. I wasn't huffing and puffing. I wasn't falling down. But each step felt like walking thru molasses. And no matter how much I did on treadmills, accu-tracks, exer-bikes or ellipticals, I could not build up endurance for the hikes.

Hiking just wasn't fun anymore.

The up side was that via the hike leader's question, I received an external indication that something needed investigating. And fortunately, I paid attention. The next thing I did was bring the medical system to bear.

Getting the 2nd Diagnosis

It's a cliche, but you just can not be prepared for the news.

After the neurologist sent me to the hematologist, the only thing I was thinking was that we had a diagnosis of Chronic Imflammatory Demylinating Polyneuropathy (to paraphrase Halle Berry in 'Die Another Day' - "Now, that's a mouthful."). We had a treatment plan of Intravenous Gammagloblin (another mouthful), and so why do I have to take time out to go see another doctor about another obscure - to me - blood level reading.

"You have a collection of symptoms that indicate a syndrome called POEMS. We don't have much experience with it here, so we suggest that you visit the Mayo Clinic for a second opinion to confirm POEMS or develop another diagnosis". In a nutshell, that was the delivery.

Points for honesty. It would have been easy for the doctor to go ego-tripping and not tell me about getting a second opinion.

Points for getting me down there to talk. I was not ready to acknowledge the importance of the news. I had a neuropathy diagnosis, and did not nor was I looking for a cancer diagnosis. That led to the question. "So are we talking about cancer?" And the answer - drum roll here - "Yes".

Badda - bing. Badda - boom.

Halfway thru the Journey

The cafeteria view of Strong Memorial Hospital leaves something to be desired. It's somewhat not interesting to look out the window and see a parking garage while waiting for the cancer folks to call and tell me that we can begin blood collection.

What I heard was that I will be in a bed for four hours. I'm not drinking a lot today.

There's lots of people around getting drinks and snacks and meals. They're reading the paper, or talking with co-workers or just looking out the window like me.