Another stroll with the youngins - dare I say it

Ben, Nyx, and I all went for a walk to the park. I was hoping Ben would have some friends to play with but no such luck on Memorial Day. That's okay. We took a long walk around the school playing field then a trip to the pond. The walk was not as ambitious as yesterdays but Nyx loved romping around in the grass. It was a beautiful out and the breezes were great. What was even better was I had a second day of no pain. I could feel a slight bit of twinging in the hips at the very end but nothing significant and certainly not the debilitating "please shoot me now" pain it used to be. I cant do a brisk dragging a 4yr old and a dachshund around but it was enough for now. The exercise is much needed from being cooped up so long.

A little exercise with my younger folk - no pain!!

Took my son and Nyx to the park which then evolved into a walk around the pond.

The exercise was good for all involved but it may have been a little too much for Nyx. He petered out and wouldn't walk anymore towards the end so I had to carry him for the last 1/3 of the walk. I think that made my son a little jealous.

I was really happy the walk didn't hurt the hips like the last few times. I guess we are making progress there. Now I need to cool off and let the skin relax because I think we are a tad cooked.

It was really good to get out for a little fresh air. Hope to do it again but preferably when it is a little less hot.

RI ANG Air Show

Didn't realize the RI ANG Air Show was coming up so quickly. June 16th weekend. Woo hooo!! Si what if I have to cover up head to toe in clothes and a sunblock. It will be worth it.

A day at the Lance Armstrong Adult Survivorship

Today started with our first appointment at 8am with a psychologist to go over how we are coping with the illness and recovery. According to the psychologist, they deem us well adjusted and doing well considering all the challenges that have come our way. Clearly they don't know me very well. My name and "well adjusted" don't exactly come up often in the same sentence.

We then went to see dermatologist to discuss long term skin care, We discussed some of the tightening and pain issues but feel the prednisone is the right treatment for now. Moisturizer, hydrocortizone, and sun block are now a must. Not sun screen. A block. Between the normal skin issues associated with BMT and my being on prednisone make my skin extremely vulnerable.

We visited a dentist to evaluate any GVHD issues. Turns out I have a slight case of GVHD at the low cheek line but nothing that I had outright noticed. Since I am on other treatments and it is not irritating, we are sitting tight for now but will keep watch.

The optometrist visit was also pretty vanilla. We know we have GVHD in the eyes and the eyes are dry which is typical for a post BMT patient. The magic prednisone should help with it but we need to be careful for long term use can contribute to cataracts. We should get a local optometrist to get a check up when I have time to do an eye dilation. Today was a whirlwind day so there was no time for anything more than a cursory exam.

Lastly, I had my first physical therapy visit today. My rhuematologist had set me up with this to help my hip and knee pain. He felt that my glutes were probably weak which was causing the pain. The PT specialist evaluated me and said that I was plenty strong. The muscle groups are very tight which may be contributing to the issue and they will work that to see if it helps.

Today's update from the doctors

It was a loooong data at Dana Farber, Brigham and Women's, and associated satellite facility. We had a blood draw, EKG, visit with the doctor, pulmonary test, bone density test, and an echo-cardiogram to finish up the day.

The blood draw was a little more than average at 11 vials. Certainly not my personal best but a good amount for a monthly exam. What was annoying was that they were VERY late. This delay compounded with  delay creep in other appointments caused a lot of running around and being over an hour late in some cases.

Anyone who knows me how severely anal I am about being on time so this really ticked me off as the day progressed.

Anyway. The visit with the doctor, really NP, was a bit more eventful. When we first got into the room, we were given a list of medications and allergies but only the allergies were listed. This made me all kinds of excited with the idea that I was getting pulled off the medications. Clearly I assumed wrong because the NP set me straight right off. Someone merely f'ed up. We then went on to discuss my pain. Eureka. We finally have an idea why. Turns out my arm and hand skin are getting EXTREMELY tight which is causing compression on the blood vessels, veins, muscles, etc due to GVHD. This causes fluid to flow and get trapped in the hands which causes the swelling and restriction in the above things. This explains why the pain can never be pinpointed to any one area and why cold/hot treatments fail. This is also why there is no evidence on the x-rays of arthritis. We have also decided that I now have an excellent case of GVHD in my eyes with my right eye being the worst. It has been decided that the steroid prednisone is the way to go. This will hopefully help with both problems. Taking the steroid has some serious side effects which I wont go into. All I can say is I hope not to be on it very long.

Last few days have been a treat

I thought the neurontin was helping with my joint pain but clearly that was wrong. The last few days have been pure agony from the hands up to the shoulders. On the usual 1-10 pain scale, they have been floating at around an 8. I am thinking it may have to do with the weather but who knows. I have been using heat but that hasn't helped. I have my monthly at Dana Farber on Tuesday. This will definitely be discussed further.

Lance Armstrong Adult Survivorship Program

According to Dana Farber Cancer Institute, I am supposed to go to the Lance Armstrong Adult Survivorship Program on Friday May 25th  to address long term complications of the bone marrow transplant.

I have my normal Dana Farber visit on the 22nd but this will be expanded upon to include bone density, pulmonary, echocardiogram, EKG, and a larger array of blood tests.

This is actually pretty good news.

I am one step closer to returning to my normal life.

On display - one show only

I took my daughter to Assabet Technical and Vocational school tonight for orientation. The staff was great and they were very high energy. They even did a cooking demonstration in the auditorium while the orientation was presented. Many of the kids were allowed to help with the cooking which was very nice. Lots of information was available both on the schooling and they many sports/clubs Lauren may be interested in. This sounds liike a great opportunity for her. Going out in a mask and gloves was worth the look of excitement on her face.

Visited rheumatologist - working my ass off

Okay.. I couldn't resist the post title.

End result of today's visit with the rheumatologist is that x-ray results of the knees and hips show no issues. Additionally, supporting blood work does not show any other ear marks that the joint pain is being caused by an immune system reaction. The doctor surmises that my being relatively inactive since the BMT has caused my gluteous maximus, gluteous minimus, and supporting connection tissue has gotten weak. Lovely. I have been prescribed physical therapy to literally strengthen my ass. If you know me and my twisted sense of humor, you can just imagine the struggle I endured during the office visit.