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Every time I hit a space in the title bar the Ap crashes so we'll have to do without a proper one! As you may remember I got a bit disgusted with the medical establishment with the on again-off again transplant thing. The oncologist wanted to do a Chemo regime that would have cost $2500 a month co-pay and $14,000 a month when I hit the doughnut hole on prescription coverage. Kept asking for an alternative didn't get any kind of meaningful response. So just took a break from treatment, felt pretty good but knew I couldn't stay away forever. Besides I got to go to Vin's 90th birthday, do Thomas weekend and got 2 more states under my belt, only 1 missing.

Went to see a new Dr. 2 weeks ago. One that a friend of Eileen's with MM, has great success with. He suggest a new program of chemo that might skip the stem cell transplant. He says 50% of patients have PERMANENT remission. So moving foreword with this, I needed to talk to another Dr., one of his former students located near us that will handle the treatment. 

We did a blood test early in the week and I'm paying a bit for the 5 months off treatment as some of the blood markers have advanced. Yesterday we did a marrow biopsy, one of the more intense but brief pains I have ever felt. This is my 4th one this year.

He also wants to do an echocardiogram before starting treatment but we're having trouble getting Medicare to approve it. This Dr. believes we may still end up doing a transplant but we'll see. He also suggests they may put me in the hospital for the first treatment as some patients have a severe reaction to the first one. I'll keep you posted.

A big bump in the road

Between the heart issues and the seeming lack of response to this chemo regimen the transplant doctors have taken it off the table for the near future. So now it's on to plan C but they don't know what that is yet. The oncologist says "go travel and enjoy yourself"! Almost sounds like a bucket list thing.

Anyway off to Boston for my friend Vin's 90th birthday party.

Another kink in the road.

First knew about this 2 weeks ago but held back saying anything until I talked to the Oncologist and wondered about the next steps. Seems the protein count in my last biopsy went up rather than down. It's now 30% rather than the 15 it was a month ago. It seems that those two cycles of "treatment " (read chemotherapy) didn't do much of a job. They want the value to be 10% or less. Also they are concerned about the heart issue. The cardiologist thinks things are OK but the transplant team isn't so sure. It's odd as the transplant folks thought other than the water weight things were OK but my cardiologist didn't go along with that. Now that the cardiologist thinks things are OK the transplant team is worried, odd! Anyhow the transplant folks want to wait a couple of weeks to see how the heart does ( the rate is reasonable and fairly steady right now) and figure out a new treatment (read Cchemo) program to get the protein # down. So currently I'm on hold and the transplant is off the table for the time beeing. That does mean I'll get to go to my friend Vin's 90th birthday party next month and probably get to do Thomas again!🚂😃 

Another surprise step.

JShould have known that no trip to the hospital is simple. What started out as a visit to shed some water weight (very successful BTW,) got the cardiologist wondering why I had gained the weight. An angiogram revealed that I had one heart valve that had shrunk in size and was restricting blood flow. So on Thursday we scheduled a Valvularplastly where they use a balloon inserted into the heart to open up the valve. Then overnight in the ICU and home on Friday.

Another surprise is that they gave me a "LIFE VEST" to wear. It is basically a wearable external AED. The Dr. Doesn't really think it's that necessary but thought it's a good idea until we get things settled down. Doubt that I could get through an airport with this on. Looks like a suiside bomber's outfit.

The several Dr.s appointments this week have just been follow ups, nothing new. Meanwhile we await the biopsy results to see what we'll do about rescheduling the transplant. Did get the 2 fillings taken care of though!

Posted 6/11

Navigating the next issues.

Actually posted 5/30/16. Finished the final 3 week round of the Chemotherapy treatments. Hopefully these will do it for the Chemo. We won't really know until we get the results of the latest bone marrow biopsy. The side effects were the same as the last couple of rounds, extreme breathlessness and dizziness. It's especially bad if I get up quickly. Can only walk (shuffle) about 20 feet before having to grab on to something. 

Assuming that this round of Chemo will do the job we started the other preparations.

We started out with an exam to find an appropriate vein in my neck for the placement of a central line. We didn't do that last time and I'm not sure why we need it this time around. Not a fan of the idea.That was Fri 5/20. 

On Monday we did a pulmonary function test to see if my lungs are up for the stress of the transplant. In the afternoon we did another bone marrow biopsy, not the best pain wise but far from the worst.

Tue was heart day, starting with an echocardiogram and an EKG. The Rush cardiologist was upset at excess water weight he thought I was carrying around (he estimated 20+lbs.), I had figured it was weight gain from the steroids in the chemo. One obvious system was rather swollen legs and feet. The Dr. wanted me to loose the weight in the hospital as the medication has a tendency to lower your BP which they wanted monitored.

Decided to do this at a hospital close to home.so it was into Edwards last Wed. under the care of my local cardiologist. At this point the weight loss has been successful (20 lbs.). But the Dr. is worried about one of my heart valves so it's angiogram time tomorrow. A little scared of that. 

Since they enter your blood stream through your crotch, they want things unobstructed. Just got my SPA treatment to ensure that.

The next step will depend on the results.

Pleasant Surprise

Went to chemo today and low and behold the person in the chair next to me was someone that I had worked with at the AAR here in Chicago. He now works with Sharma and Associates, a railroad consulting group started by Chicago based AAR employees that didn't want to go to Pueblo.

Anyhow had an interesting time discussing old times and the current status of mutual friends. Made the time pass quicker. 

Did feel the side effect of inability to sleep last night.

Fifth time around

Started the fifth round of chemo today. The infusion nurses were surprised to see me back. All wanted to know why? I jokingly told them it was because they didn't do their job good enough last time. Other than some delays on getting the paper work in order things went smoothly. Got me on the first stick. A lot better than the 9 sticks one time on the last go around. 

So far no sign of side effects they usually didn't start until Wed. but toward the last of the fourth round they started to appear on Monday. Hopefully the month off has reset the clock. Let's see how things work out as we move along.