Day +219: Well it’s all right…

“Well it’s all right, riding around in the breeze
Well it’s all right, if you live the life you please.”

Greetings, everyone! Sorry for the delay in posting but I’ve been having a heck of a time getting the finer details of my results from Johns Hopkins for my June 2 check-up. It’s very frustrating when I’m trying to get a copy of my actual labs and the attitude is, “We already told you everything is fine.” In general, I think I’ve received excellent medical care there but the place is so big and impersonal compared to my local hematology group. I adore my hematologist, Dr. Bahrani. He’s the best, medically and personally, always ready to listen attentively and thoroughly answer as many questions as I have. He even remembers to ask how Michael is when he’s not with me. Dr. B has also been frustrated with lines of communication and coordination with Johns Hopkins. It’s very nice having the rest of the local staff greeting me warmly every visit. I’m known among the phlebotomists and chemo nurses as the patient with the coolest shoes.

Back to the six-month lab results, my ferritin was still very high at 2081 but neither the transplant doctor nor the hematologist are concerned. My liver enzymes are still slightly elevated (AST 61/ALT 53) but bilirubin is normal range (1.1). My bone marrow biopsy indicated inflammation of some of the red cells but no evidence that it is caused by residual disease. My cytogenetics showed a non-clonal structural abnormality in a single cell. (I asked Dr. Bahrani about both since neither item was even mentioned by the transplant doctor. Dr. B said that these types of anomalies are common and may be caused by my Vidaza treatments. “Non-clonal” is the important descriptor indicating we shouldn’t be worried at this point.) No excess blasts.

I saw my local gastroenterologist, Dr. Sood, who is also very good, on June 15. He still does not want to do an endoscopy, his primary reasoning being that I am having no pain or difficulty swallowing. Even if I have mild GvHD, it is not bad enough to treat – steroids or immunosuppressants would be harder on me yet. He said it may take a long time for my gi system to get back to normal after going off the antibiotics. Two weeks isn’t long enough for a definitive answer. He believes I’m doing well, headed in the right direction, and that there’s no need for a follow-up with him unless something changes for the worse.

More good news – the rheumatology nurse practitioner reviewed my blood work, and it looks like I probably do not have Sjögren’s syndrome. She doesn’t need to see me at this point but asked me to keep in close touch with my progress.

As Michael mentioned in the previous post, I had my Vidaza treatments June 20-24. The sore knots in my stomach finally went away for the most part by the end of last week. Constipation remains an issue due to the Vidaza and Zofran. I’ve been taking
Reglan in addition to the docusate for the past week which helps somewhat. Dr. Bahrani recommended not staying on Reglan too long to avoid cumulative side effects but said a couple of weeks at a time with breaks in between should be no problem. My beginning of cycle CBC was better than May’s:

WBC: 3300 (norm 4500-10500)
Granulocytes (~ANC): 1700 (norm 1400-6500)
Platelets: 536 (norm 150-450)
RBC: 3.60 (norm 4.00-6.00)
HGB (hemoglobin): 13.1 (norm 11.0-18.0)
HCT (hematocrit): 38.8 (norm 35.0-60.0)

Yes, eating continues to be a problem but I do notice some improvements. For example, last week I ate at the new Tex-Mex restaurant, opened recently by our favorite Indian chef, Neel, and sampled a wide variety of dishes. This week, I cooked a full dinner of rouladen, red cabbage, and potato dumplings for my niece’s birthday. A month ago, the cooking smells alone would have had me queasy, if not vomiting. I was even able to enjoy half a rouladen and a couple of dumplings as well as a piece of birthday cake (Michael’s special marble cake) afterwards. Food still does not taste right but I think I have a little more saliva and my tongue is not as heavily coated.

I saw Dr. Bahrani yesterday for my mid cycle check-up. He’s very happy with my progress although sympathetic about the eating issues. He assured me that he thinks I’ll feel even better after the Vidaza treatments end. Seven more months seems like a long time but we both noted how amazingly quickly time flies past. He, too, thinks I have mild GvHD, in his words, “Exactly the right amount [to keep the cancer away].” My eyes aren’t quite so dry. My skin continues to be dry with mottled pigmentation but these are basically cosmetic issues and don’t bother me much at all. My hair is not as thick as I’d like but it is coming back! My blood counts are looking very good:

WBC: 4700 (norm 4500-10500)
Granulocytes (~ANC): 2700 (norm 1400-6500)
Platelets: 233 (norm 150-450)
RBC: 3.64 (norm 4.00-6.00)
HGB (hemoglobin): 13.5 (norm 11.0-18.0)
HCT (hematocrit): 38.9 (norm 35.0-60.0)

On a side note, I learned that Dr. B’s cousin, Ramin Bahrani, is making a new film starring Zac Efron and Dennis Quaid. His prior three films – Chop Shop, Man Push Cart, and Goodbye Solo (my favorite thus far) – were all critically acclaimed but unfortunately made no money. They are on the dark side but try them for something very different from Hollywood films. He’s obviously a very talented writer and director. Hopefully, the bigger name actors will help bring him more success so he can continue his craft.

On the home front, we’re excited to be getting a new retaining wall and new steps leading from the garage/parking area to the deck this week. The workers are doing a great job thus far and should be done in a couple more days. I’ll take some photos when everything is finished.

We finally got some rain today, a nice big thunder storm, and another tonight as I write. We’ve had a shortage of rain lately, an unusually dry June.

Dory Alexander (our black and white Persian) has continued brawling with the neighbor’s red cat. Michael went to talk with the neighbor to make sure they weren’t too upset with him spending so much time there lately. Apparently they view both cats equally to blame in the squabbles. They didn’t know Dory’s name so have been calling him the Oreo cat. I like that and have dubbed him “Doryo.” Maya’s latest trick is hiding behind the shower curtain and attacking the shadows when anyone uses the toilet. The curtain is now aerated for faster drying, ha ha. If you visit and use the facilities, don’t get your hand too close to the curtain or you could lose a finger!

I’m disappointed that no one IDed the Day +191 tagline despite the huge hint:

Day +191: Hey Baby, No Doubt (no one IDed)
Day +212: Skating Away, Jethro Tull (no one IDed)

On a final note, a few subscribers have mentioned they haven’t been getting notified when there’s a new post here. If you are a subscriber and have the time, please send me a personal email to let me know you received the notification for this entry. This will help me sort out what’s going on.

4 Comments:

  1. First off-I found out about this new post from your Facebook message. We did not get notification to our email account. I just checked our old notifications, and it looks like our last notification was on June 9th.

    Your lab reports look great! You are probably more normal than me. But that’s not saying much. (And no. I am not sick. Just trying to be funny. 😀 )

    I hope the dryness continues to improve and especially your tongue. Because I know how you enjoy exciting foods.

    Of course I do not know the tagline. I did get excited by the beginning of this one. Thought it might be a Beatles song. But alas, it isn’t. 🙁 And it is the words at the end of the song. I checked. Oh well. Is there any hope for me? Probably not when it comes to music.

  2. Cathy, it’s at the beginning of the song also. You can still post the answer even if you have to look it up! I wouldn’t get a lot of them either even though they’re all songs I know once I see the whole thing or hear part.

  3. Valerie Wilcox

    Your continued story gives us just starting the transplant process something to help us understand where we may be headed. Thanks for the continued information, it really helps.

  4. Hi, This is Nora and Sharon’s mom. Some people think that being a bone marorw donor is very painful, so they hesitate to sign up. Signing up is easy and requires just a blood test. Even the next stage, where you have been identified as a potential donor is easy just a blood test. The actual donating is done under anesthesia and your hip bone(s) might hurt for a few days but what is that bit of pain if it saves someones life? You can take pain pills. The odds are slight that you will ever be called on. I was called for further testing but no further. My husband has never been called on for further testing. But we would have donated without a moment’s hesitation if we had had the chance. So, please, register to be a donor!!!

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