Day  +351: Silver threads and golden needles…

Time to catch up – I’ve been procrastinating about writing more.

My birthday was quiet but nice. I’ve always loved my birthdays but was especially happy to see this one. So many times during the past year, I wondered if I would. I visited Michael at work, got my new military ID (with my wig on), and went out for Chinese lunch. My niece’s husband kindly cooked chicken and dumplings for my dinner, despite his having a tooth pulled that afternoon. Thank you, John! We finished with pumpkin cheesecake for dessert.

The next day, October 27, was my monthly visit with the hematologist. He removed my skin biopsy stitches. My blood counts continue to look good:

October 27:
WBC: 4400 (norm 3000-11200)
Granulocytes (~ANC): 2900 (norm 1400-9200)
Platelets: 307 (norm 150-450)
RBC: 3.75 (norm 3.90-4.90)
HGB (hemoglobin): 13.0 (norm 11.5-14.3)
HCT (hematocrit): 38.0 (norm 34.0-42.2)
Bilirubin 0.6 (normal 0.0 – 1.2)
AST 37 (normal 0-40)
ALT 35 (normal 0-40)
Alkaline Phosphatase, S  197 (norm 25-150)

Last week, I completed my 10th and possibly final post transplant Vidaza cycle (to be decided at my December 1st one year check-up). I experienced all over joint and muscle soreness this time around. Every cycle is different. My bloodwork was typical (for me) at the beginning of the cycle. I’m kind of nervous to see how it will change after I stop the chemo.

November 7:
WBC: 3100 (norm 3000-11200)
Granulocytes (~ANC):   ? (norm 1400-9200)
Platelets: 594 (norm 150-450)
RBC: 3.70 (norm 3.90-4.90)
HGB (hemoglobin): 13.4 (norm 11.5-14.3)
HCT (hematocrit): 37.7 (norm 34.0-42.2)

Last Tuesday, I went to the dermatologist and got prescripions for permethrin (same as the pet med, Revolution) cream in case I have skin mites and a topical steroid cream for the itching. I return for a follow-up in a month. The permethrin doesn’t seem to have helped thus far but I still have to do another dose next week.

I also saw an orthopedic doctor last Wednesday. He suggested I get the Fosamax or equivalent prescribed by my oncologist or family doctor because it should be monitored regularly. He said the ortho docs generally treat a specific problem and then don’t see you again unless it recurs or a new one crops up. He did prescribe physical therapy – stretching and trunk strengthening for my back. I started yesterday and will go 2-3 times weekly for a month or two. They’ll mainly be training me for exercises I should be doing on my own at home over the long term.

Monday, I returned to NIH and had an acupuncture treatment for my dry mouth. It was my first time, and I had no idea what to expect (maybe just as well!).  The acupuncturist, Dr. Ge, first situated me comfortably in an armless curved chaise lounge type therapy chair. She asked me to describe my symptoms, including onset, duration, and intensity. Then she
walked around me and examined my face from every angle and also examined my tongue. After that, she inserted the needles (not golden) in my face. This hurt more than I expected although not unbearably. I could feel the pin prick sting and tingle (and kept thinking, “What if I sneeze?”) My brother-in-law took some photos which I haven’t had the courage to look at yet. The idea of seeing the needles hanging off my face creeps me out a bit. He said there were seven, although it seemed like more when she was inserting them. I’ll look at the pics soon and post if it seems appropriate.  She then rotated the needles gently and instructed me not to move my face or head and to relax quietly for 30 minutes. When she returned, she removed the needles and said she had read my entire case history. She doesn’t want to do any more acupuncture until I’ve been done with chemo for several months and my body’s had a chance to return to a more nomal state free of the toxins. She said she puts a needle in each ear of her Sjogrens patients. The needles remain for two weeks at a time and are manipulated gently by the patient daily. This continues for six sessions. Ugh. It sounds awful but she says they’ve had great success.  I guess I’ll try it in hopes of fixing my dry mouth and taste buds – better a few months of discomfort than to be on medication with associated side effects for a lifetime. She wants me to come back in March. In the meantime, she wants me to do acupressure at home, gently massaging a spot below my lower lip and lines in front of my ears along my jawline twice daily.

After the acupuncture, I saw the dentist, Dr. Mays, to get a biopsy of some minor salivary glands. The procedure was explained in full, and I received a shot of local anesthesia after having the opportunity to ask as many questions as I wanted. There are more than 300 minor salivary glands in addition to the two major parotids. The procedure was to remove a few of these minor glands from inside my mouth, below my lower lip. Fortunately, the pathologist Dr. Ilias (forgot his last name), didn’t have to cut very deep before some popped out. Sometimes they use dissolving sutures to close the cut but he chose to use silk thread (not silver) instead so they wouldn’t irritate my very dry mouth. I got a total of three stitches that I can get removed locally next week. I had to use an ice pack, alternating 20 minutes on and off for the rest of the day and rinse with warm salt water but overall, the procedure wasn’t bad. I’ll get results in about a week. In addition to using the glands in their research, they’re checking further for gvhd. Dr. Mays is a super nice dentist – I wish she had a private practice close to home.

Once again, I was thoroughly impressed with all the folks at NIH. I received follow-up calls yesterday, confirming I’m okay and reiterating instructions. I also received an email from the dentist and will be getting a call from the acupunturist in a couple of weeks to check on the acupressure progress.

Guess that’s it for the medical news. I can’t believe my first rebirthday is coming up in just two weeks!

5 Comments:

  1. Ouch! That acupuncture stuff sounds scary. So I hope it fixes what ails you. I’m glad to hear your NIH experiences accord with mine. Aside from the bone marrow biopsies, I’ve been really happy with the folks there.

    And I like Linda Ronstadt, too.

    Happy belated birthday!

    Greg

  2. Greg,

    Thanks for the birthday wishes. I didn’t need a bone marrow biopsy but had made up my mind beforehand that I wouldn’t let them do one anyway, based on your experience as well as that of another poster in marrowforums! I’ll be getting one in a couple of weeks at Johns Hopkins. I think it will be my 8th. It’s no wonder I have osteopenia with all of those holes poked in my bones (just kidding, of course).

    Karen

  3. I’m glad you did the accupunture. I did that several years ago for a neck disc problem and it worked! They also did cuppling. Keep us informed how you do. You are a brave woman!!! Keep doing well Karen. Lori

  4. Now that you’ve tried acupuncture, you should watch Eli Stone. He tried acupuncture for stress and something weird happens (which is the basis for the series).

  5. glad to hear things are going great. i didn’t like my last bone marrow biopsy at NIH. she wasn’t really good and took longer to do the procedure. take care.

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