“Sometimes, it feels like I’m gonna break.
Sometimes, this world gives more than I can take.
Sometimes, sunshine gets lost in the rain.
And it keeps pouring down
It just keeps coming down.
This life would kill me If I didn’t have you….
You were made for me.”
12/15/2013: Greetings and happy holidays! It’s been a busy couple of weeks. We finally got around to a belated celebratory rebirthday lunch with my family at a local Chinese restaurant yesterday.
First, the great news I received via email Friday and the reason for today’s tagline, dedicated to my donor, Mary Lou
“Bone marrow results show no evidence of disease with 100% donor. Enjoy the holidays.”
If you’re looking for the perfect gift this holiday season, sign up for the Marrow Registry. It’s hard to top the gift of life!
We awakened to a dense fog and barely made it to my appointment on time despite leaving home extra early. Michael wore a mask to prevent spreading the respiratory infection he caught from me. We’re both better now, just a bit of lingering phlegm and cough.
Only 3 vials of blood drawn, one less than last year! They did a full panel – CBC, CMP, TSH, T4, T3, ferritin, magnesium, and LDH. The results were good:
WBC: 10420 (ref 4500.-11000.)
ANC: 4340 (ref 1500.-7800.)
Platelets: 460 (ref 150-350)
RBC: 4.39 (ref 4.00-5.20)
HGB (hemoglobin): 13.9 (ref 12.00-15.00)
HCT (hematocrit): 41.7 (ref 36.00-46.00)
Bilirubin: 0.7 (ref 0.1-1.2)
AST: 31 (ref 0-31)
ALT: 19 (ref 0-31)
Alkaline Phosphatase: 92 (ref 30-120)
Ferritin: 389 (ref 13-150)
No immunizations this year, so we had some time before my bone marrow biopsy (BMB). We picked up my cyclosporine prescription refill (the subject of my prior post) and stopped by the dental clinic (more on that below).
I tried to keep my anxiety at bay as I awaited the BMB. It’s funny, I was terrified before my first in January 2010 and then found it wasn’t bad at all. After several more with no problems, I was quite relaxed about the whole process. But then came the difficult #8 two years ago. Even though last year wasn’t too bad, I couldn’t erase the one before it from my mind. When last year’s tech, Don, showed up to take me to the procedure room, I breathed a big sigh of relief. He had been very proficient and had had no trouble getting a good sample with only a brief episode of pain. This BMB, my 10th, was again done quickly and easily and painful only for a moment. It stayed sore a few days this time, and I had some sciatic pain when walking or lying down. All in all, not bad though. I know some facilities don’t continue doing BMBs after the first year or two but I like the peace of mind that comes with “100% donor/no evidence of disease” – well worth the temporary discomfort to me. Johns Hopkins does them annually for 5 years post transplant, so it’s 3 down, 2 to go (knock wood).
More waiting – this time we went to the cafeteria and had lunch, much more enjoyable and easy to consume than it had been on the past two yearly exam days.
After lunch, we saw the transplant nurse practitioner (NP) and doctor. I went in, determined to maintain a positive attitude and to not make any sarcastic remarks, no matter what. The visit went surprisingly well and I slipped only once. After I commented that this was my 10th BMB, Dr. Jones said, “Oh, I’ve only had six. Of course, not for the same reason.” I jokingly blurted, “Oh, you practiced on yourself using a hand mirror.” His back was to me so I couldn’t see his reaction but he stammered something like, “No, no – nothing like that.” Michael was facing him and told me later that I “got him” – so much for good intentions. I can’t help myself sometimes.
Dr. Jones looked at my skin GvHD and said he thought it looked better than when he’d last seen me. I agreed, and told him I was going to try the ECP (extracorporeal photopheresis) because the dermatologist didn’t think the UVA1 produced enough positive change. The ECP will tone down my immune system. I asked if it could increase my risk for relapse. He assured me that studies show a little GvHD helps prevent MDS relapse but there’s no evidence that more is better; he said I’d had quite enough. Finally, we are in agreement on this issue.
I asked about my raised right hemidiaphragm, and he poked and prodded my midsection. He said any abdominal issues would have shown up in my blood work, and he couldn’t feel anything problematic. (In fact, I later looked up my results from last year’s swallow study and saw that my right hemidiaphragm was slightly raised a year ago and not considered a problem then either. I guess it’s just my normal.)
Audra, the NP, said she’d try to get me an appointment for a bone density scan the same day as my first ECP on December 27th. I requested a pulmonary function test but she said there was no justification to order one. I also told her about my dental problems, and she said they’d had a difficult time with the Hopkins dental clinic when trying to do referrals for their patients – and they’re part of the same hospital!
I asked how often I should get blood work between annual visits. Dr. Jones said he wanted to see me in three months to assess my progress with the ECP and my GvHD.
So, on the way out, we made an appointment for March 27th and were on the road well before rush hour – excellent timing and not a bad day.
I had a port implanted last Thursday in preparation for my photopheresis treatments. Click the thumbnail for a description. Mine is the titanium/silicon/single model. My sister went with me since I couldn’t drive home after the general anaesthesia. I had to arrive at 9 a.m. for a 10:30 procedure. As it turned out, I didn’t get into the operating room until after noon. I’m good at waiting but I was simultaneously hungry, thirsty, and nauseated after not eating or drinking for 14 hours. After the implant was completed, I awakened with no ill effects My first request in recovery was food, and I was surprised when the nurse brought me a turkey wrap, Goldfish crackers, a small chocolate bar and choice of beverage. Not bad!
I remained hungry despite the snack, so we stopped at Chili’s for salads on the way home. By the time we finished, the pain killers were wearing off and I was feeling a little woozy. It hurt more than I expected and has remained sore and bruised, although there’s no sign of infection, and it is healing. I still can’t sleep on my right side. I don’t remember the Hickman catheter being this sore.
My port was still so sore Friday morning that Michael decided to drive me to my eye appointment and go into work a little late. I wanted him to meet my ophthalmologist, Dr. Prescott, anyway. She is super. We talked about the prescription error. She looked at both bottles and said that I needed to talk to the pharmacy supervisor about the mixup which was apparently caused by the verifier. She noted that the drugs were most likely compounded correctly, so someone else probably got the cyclosporine intended for me when I got their VFEND. I hadn’t thought of that – the compounds are prepared only when there’s a specific order. I haven’t contacted them yet but plan to call Monday.
The doctor agrees that I shouldn’t use any more cyclosporine or Restasis drops and wants me to do a three-week tapering course (3x/2x/1x daily) of mild steroid Lotemax drops to calm the irritation and to use Lotemax ointment nightly instead of every other night as I have been. She said my eyes are definitely drier than at my last visit in October. She, too, was extremely disappointed about the drug mixup and the fact that I wasn’t able to tolerate the stronger cyclosporine after all. She had told others about my apparent sensitivity to inert ingredients in Restasis and how great it was that I could use the stronger cyclosporine instead (so we thought). After receiving my note last week, she also researched VFEND to see if there were any studies or indications that it might have an off-label benefit for dry eyes. Sadly, she found nothing. She concurred with my assessment that the effect of VFEND had been neutral. My eyes felt and saw better without the irritating Restasis but gradually dried out again after not using it.
Like me, she hopes my eyes will benefit from the ECP treatments. There’s a good chance they will if the dryness is caused by GvHD. She wants to see me in six weeks on Feb. 7 to reassess.
As I mentioned earlier, we went to the Hopkins dental clinic in between appointments on December 5th (more than a week after our prior visit and subsequent referral from my regular dentist). Recall that I’d been trying to schedule an appointment since Nov. 19th with none of my phone calls returned. The staff were once again fairly rude and kept us waiting. Eventually I was told that the soonest appointment I could have would be January 22nd. Frustrated at their lack of responsiveness, I told them to forget it and walked out. On the way home, I telephoned my primary insurance and asked for the name of an in-network provider close to home and was dismayed to learn the closest one was in Baltimore. At the thought of having to drive all the way downtown for a new doctor, I began to have second thoughts about Hopkins. It’s comforting to have everything in a central, familiar location plus Johns Hopkins now has a nice patient portal where I access my records and contact my doctors online. When I got home, I called and left a conciliatory voice mail, indicating that I had walked out because I was late for another appointment and asking them to call so I could schedule, even if I couldn’t see anyone until late January. Of course, they never returned my call. Fortunately, I went online the next day and discovered an in-network oral surgeon about a 30 minute drive from home. They were so nice on the phone that I wondered why I’d wasted my time with Hopkins. They offered me an appointment within a few days but I had a schedule conflict so made it for Saturday, December 14th.
They first did a panoramic x-ray of my jaw and had me complete a load of paperwork. Then I had a preliminary exam by a technician followed by a thorough exam and consultation with the surgeon, Dr. Yalamanchili. I liked her very much. She asked lots of questions about my medical history, with encouraging comments every step of the way.
After peering in and poking around my mouth, she said the outer tissue looks pink and healthy but she thinks there is some splintering of the underlying bone and asked if I’d had any injury there. She then showed me my x-ray, noting that my left jaw was much darker than my right on the image, indicating something was going on there. She said it is a good sign that the swelling and soreness improved with the antibiotics I took for my cold – malignancies don’t generally get better with antibiotics. However, it is possible that the improvement had nothing to do with the antibiotics, that the timing of the natural healing was coincidental.
She wants to wait two weeks, and if it isn’t completely healed, she’ll open the area and clean it out and do a biopsy. She said she doesn’t think anything serious is wrong but wants to be cautious because of my history. I agree. For the same reason, she also wants me to take a prophylactic antibiotic (amoxicillin) immediately before and after the surgery which will be done with general sedation on December 28th. She says the aftermath will be similar to having a wisdom tooth extracted – pain and swelling for several days after the surgery. I’m not happy about that but again, the peace of mind will be worth the pain. After two unrelated cancer diagnoses in the past 4 years, I’m rather paranoid!
Our blog mostly consists of medical updates but sometimes I like to remind everyone that the medical stuff is truly a small part of our lives overall. Here’s a sampling of our “other life”: For my 60th birthday in October, we spent a beautiful long weekend at Lake Tahoe with my sister and brother-in-law. My niece and I had plenty of good food and good fun in NYC on November 15th. We treated each other to the spectacular Rockettes Christmas Show. It’s truly amazing how they integrate the live and digital components. Also in November, Michael and I visited a friend in Cumberland (western Maryland). She has many adorable cats and kittens. It was very hard to resist bringing one home but we already have six, more than enough. Those who know me know my love of winter and snow. Last year, we had disappointingly little, maybe a few inches the entire winter. This year, we’ve already had three snowfalls in a single week – 7″ on December 8th, 4″ on December 10th, and another 3″ before turning into rain on December 14th. I realize these aren’t impressive amounts but hey, very beautiful nonetheless.
Nice to see all the recent tagline comments. Thank you!
Day +1055: Ultraviolet, U2 (IDed by Heather)
Day +1061: Touch of Grey, Grateful Dead (no one IDed – I expected Deb and Mike to chime in on this one)
Day +1096: Miracle Cure, The Who (IDed by Cathy)
Day +1096: Yesterday, Beatles (IDed by Cathy)
Day +1096: Memories of East Texas, Michelle Shocked (IDed by Cathy)
Day +1100: I’m Going Slightly Mad, Queen (IDed by Cathy)
Day +1103: Ironic, Alanis Morissette (IDed by Heather, Leslie, Dana)
Cathy is the superstar with 4 IDs this time! Way to go!