Jan 21st, 2014
1/21/2014: It’s been a gorgeous snowy day here, beginning around 8:30 a.m. and still snowing now at 11:00 p.m. I love watching. Overnight snowfalls are fine but they have a prerecorded feel about them – I prefer the live action. A day of putzing on the computers and taking pictures of birds and squirrels out my back door is hard to beat!
My latest project has been creating a chronological iTunes playlist of all of our tag lines, a musical journey of sorts. In the midst of my work today, I found a page of notes that never got posted, miscellany, more for myself than for others but included here for completeness.
I telephoned the Hopkins Arcade Pharmacy on December 16 and spoke with a pharmacist, Tammy, about my prescription error. She asked lots of questions, the first of which was, “Are you okay?” I explained (see Day +1103) all that had transpired. She was very apologetic. I described the bottles and labels in detail and my reaction to the actual cyclosporine drops when I got the refill. The compounds are made in batches and stored in the refrigerator. The cyclosporine drops are next to the vfend drops, and someone apparently grabbed the wrong bottle when I picked up my Rx. The good news – it’s unlikely that someone else ended up with mine, compounding the mistake. She explained that all the information goes into an error database and asked if I’d bring both prescriptions in on my next visit to Hopkins. She apologized and thanked me for being patient and understanding. I spoke with her face to face on January 15 when I dropped off both sets of drops and containers. She was very pleasant and professional and again expressed relief that I was okay. Lesson learned: Always verify your prescriptions when you pick them up. If you have any doubts, ask in person – don’t rely on telephone or email. Mistakes do happen.
My eyes have been dry and my vision very blurry. I’m tempted to try using Restasis again, just at night, but I’d like to wait and see what the ECP treatments do, if anything. I use GenTeal gel and Tears Naturale Forte during the day and Lotemax steroid ointment at night. Every morning, I scrub my eyelids and eye lashes with Occusoft pads.
I had a “medical” pedicure on December 17. I think I’ll go back to the cosmetic ones that are more comprehensive for less money. Occasionally, I get ingrown toenails and had the edges of my left big toenail surgically removed after my pedicure. Surprisingly, the lidocaine injection in my toe (“you’ll feel a little pinch”) was way more painful than any of my bone marrow biopsies. As my toe was numbing, I experienced crampy pain running up the front of my leg all the way to my knee and asked the doc about it. “Huh, never heard of anything like that. It shouldn’t be from the lidocaine.” My theory is that he hit a nerve. He completed the minor surgery and sent me home with a bright red Coban™ wrapping covering most of my foot and ankle to keep the dressing on my toe. Before I went to bed 9 hours later, my toe was still completely numb, no feeling whatsoever. I was a bit worried but next morning the toe was sore and throbbing, as expected. It took several weeks to heal instead of the usual 10 days or so. Now that it’s healed, I’m happy, but I had serious doubts in the interim. I probably won’t get the rest done anytime soon. At least the enormous red bandage matched my boots and electronic gadgets. Dr. R said the red was purely accidental – he grabbed the closest available roll from the shelf. After the first day, all I needed was a band-aid anyway.
Less than a week after my Dec 14 oral surgery consultation, I felt something in my mouth while talking on the phone. It turned out to be a teeny tiny chip of bone which I saved to show the surgeon when I went for my biopsy. I returned to the oral surgeon on December 28, apprehensive about potential nerve damage during the biopsy that could permanently numb part of my tongue. However, after Dr. Y examined my mouth, she was so pleased at how much better it looked that instead of doing surgery, she decided to wait another two weeks and reassess. It’s possible that the bone sliver was causing the irritation. Because of my ongoing photopheresis treatments, she also wanted to speak with my oncologist before doing any surgery. So instead of getting cut, I had brunch – hurray! Dr. Y telephoned me January 7 to ask how I was doing. By then, the soreness was almost completely gone. She examined me again on January 18. I had healed so well that she deemed the biopsy unnecessary. She offered to make a small incision and smooth out the bony protrusion (exostosis) but I declined because it is isn’t bothering me at all now. I can always return if it becomes troublesome again.
On December 20, I received an email notification that my full bone marrow biopsy report was available via the patient portal. I eagerly logged in to read and wished I hadn’t.
“1. BONE MARROW (BIOPSY AND ASPIRATE): HYPERCELLULAR MARROW WITH TRILINEAGE HEMATOPOIESIS AND ATYPICAL LYMPHOID AGGREGATES, NO EVIDENCE OF ACUTE LEUKEMIA. SEE NOTE.
NOTE: Several atypical lymphoid aggregates are present suggesting the possibility of a low grade B cell lymphoma.
“MICROSCOPIC DESCRIPTION: The marrow is hypercellular (80-90%) and there is trilineage hematopoiesis. The myeloid:erythroid ratio is increased (5:1). There is left-shifted myelopoiesis, and the erythroid lineages shows a full range of maturation Megakaryocytes are increased in number and focally abnormal in morphology with small, hypolobated and hyperchromatic forms with focal clustering. The accompanying aspirate shows progressive maturation of both the myeloid and erythroid lineages. There is no dysplasia or increase in blasts. Flow cytometry, reported in detail separately, shows no increase in blasts.”
Trying to remain calm, I emailed a copy to my most trusted doctor, my hematologist, and asked if I should be worried. I also emailed my transplant doctor. Still, my mind was racing – enlarged abdominal lymph nodes could explain my raised right hemidiaphragm as well as my white counts being in the high normal range and my lymphocyte percentage being very slightly above normal. I’ve also been tired and easily winded. I started searching the internet for B cell lymphoma and learned on MedScape: “Non-Hodgkin lymphoma (NHL) is a collective term for a heterogeneous group of lymphoproliferative malignancies with differing patterns of behavior and responses to treatment. Most (ie, 80-90%) NHLs are of B-cell origin.” I realized it was pointless to research more until I understood the specifics of my pathology better. I resisted more surfing until I heard from Dr. Bahrani and/or Dr. Jones.
Thankfully, Dr. Bahrani replied very soon – “Looks good!” I emailed him again, asking specifically about the lymphoma comment. Again, a speedy response:
“I noticed that, nothing to be concerned about at this time; we will just monitor your counts and do lymph node examination periodically. No need for any treatment for this.”
Because he’s always been completely straightforward with me, even when the news was bad, I trust what he says. The same answer from someone else would not have carried as much weight with me.
Dr. Jones responded December 26, apologizing for the delay. He ordinarily replies immediately but my message had ended up in his spam folder. He wrote:
“Lymphoid aggregates – benign – are very common in bone marrows of older patients. I have no idea why pathologist is suggesting low-grade lymphoma. You had them last year and they were read flat out as ‘benign.’ We never run down lymphoid nodules in marrow without some other reason to do it. And, you had a PET scan last year which didn’t show any abdominal nodes. Low grade lymphoma doesn’t grow that fast, and we don’t treat asymptomatic patients with the disease since it often doesn’t cause any problems or change survival in any way (hence, the name ‘low-grade.’)
“If you read down in report, the B cell clonality studies were not done because the marrow was being done to evaluate MDS, not lymphoma. Again, I can’t say with 100% certainty that this isn’t lymphoma, but I can say with 90% it isn’t and with 100% even if it was, we wouldn’t do anything differently. We can add B cell studies to marrow next year.”
After Michael and I talked about the replies, we were still apprehensive. I emailed Dr. Bahrani again and asked if I could get a chest/abdominal CT for additional peace of mind. He readily acquiesced. I was scheduled today but postponed until January 30 because of the snow. I’ll get the results at my regular exam on February 5.
Like most cancer survivors and their caregivers, Michael and I will always be a little paranoid; however, we do trust my doctors “‘Cause I gotta have faith….” They’ve gotten me this far without serious problems against some frightening odds.
I’ve had an earache in my left ear off and on for the past couple of months. I attributed it to the respiratory infection and/or dental problems but it’s still there sometimes even with those resolved. It doesn’t feel like it did when I had the base of tongue cancer. I took Sudafed for a week which helped but also caused extreme dryness and insomnia, so I stopped. I also have a swollen node on the right back side of my neck. I suspect I have fluid and a low-grade infection in my ear and will get it checked by Dr. B on February 5 as well as by my surgeon at my next appointment on February 18.
My lymphedema has been worse lately, probably my fault for not wearing my mask as much as I should. The mask is quite uncomfortable.
I’ve completed five ECP treatments. My back is itchy but less sore, and my eyes may be a little better. It’s probably way too soon to tell. My port remained very sore for several weeks after implantation and is still tender. There’ve been problems with repeated occlusions and slow flow rates during my ECP sessions. Last week, the machine errored and I had to move to a different machine and start over. The apheresis nurse said they’re going to try a stronger heparin mix on the flushes. My platelets are high (around 500k) but I’m inclined to suspect the problem is with my port. If the same thing happens next time, I’m going to ask them to do a one-time treatment using an IV directly in my vein to rule out the port as the source of trouble.
On a side note, the guy in the chair next to me had his transplant at “The Hutch” in Seattle and participated in the radioisotope clonal antibody trial that I considered. I was excited talking to him about his experiences there. Very interesting stuff. He also confirmed my belief that they’re much more coordinated than Hopkins with other medical specialists (dentists, cardiologists, dermatologists, etc.) who are experienced with treating transplantees.
Cathy is a superstar and our hero for taking the time to look up and identify every tagline! Kudos to Leslie, too, for identifying the Thompson Square song. Thank you both.
January has been a month of celebrations – my sister’s birthday, our grandnephew’s Eagle Scout Court of Honor, our newest niece’s christening, and plane tickets purchased to attend a fellow transplantee’s five-year rebirthday party in June. And, of course, lots of snow!