Day +3520: And I’ve seen my friends fall away before their time…

“…And I’ve been afraid that I may follow in their light
So I drink and love and whisper all the things I know are right
Someday I will leave this world but maybe not tonight…”

7/21/2020: Now that Michael has entertained you with the big picture, I’ll fill in some boring medical details. Remember, boring is what we want! I’ve spent a lot of July catching up on medical appointments that had been deferred since mid-March. Results are in, equivocal but good enough for now.

Recall that my blood counts have been quite stable for the past 9 years since bone marrow transplant. In particular, my new platelet normal has been consistently 100k-150k above the standard reference range but normal for me, the persistent outlier. So when they dropped 100k between September and December, I noticed. February blood work showed another 100k drop but still within reference range. At this point, I’d ordinarily have contacted my hematologist, Dr. Bahrani, for reassurance but I also had a miserable urinary tract infection, with symptoms persisting after my urine tested clear, so decided to wait until that was resolved. A subsequent ultrasound on March 13 revealed changes in a pre-existing cyst on my right kidney. Primary care wasn’t terribly concerned because “benign cysts are common in older folks” but given my history ordered an abdominal MRI for March 20. By then, everything was pretty much locked down here due to COVID19. However, I feared the unknown more than the virus so kept my appointment. Results that should have been reassuring left me with more questions:

1. Right renal 5.5 cm Bosniak type II cyst; benign.
2. Pancreatic body 5 mm cystic lesion, suggestive of a sidebranch IPMN, without suspicious features.

WTF? A pancreas lesion!?

“Do you think it’s time that I made out my will?
I’ll leave everything to you to pay my bill
Just how long is there to go
Please tell me I want to know…”

Primary care said nothing to worry about but I looked up IPMN, and I worried: “An intraductal papillary mucinous neoplasm (IPMN) is a growth in the main pancreatic duct or one of its side branches. IPMN may be precancerous or cancerous. Depending on its location and other factors, IPMN may require surgical removal.” Now I really want to talk to Dr. Bahrani but we’re in full quarantine mode. All of my doctors had called and cancelled my appointments – they were taking emergencies only. I knew my condition wasn’t emergent. I needed to wait. COVID19 didn’t make me panic because I could avoid contact but my anxiety grew wildly as I wondered what I would do if I couldn’t get timely medical care for other issues because of the pandemic. To top it off, something totally new, my navel got infected. 🙄

Fortunately, my routine primary care appointment was only a couple of weeks later in April, accomplished via telemedicine. The doctor and I had a good talk, and she took the time to confer with the pathologist about my results and put in an order for another scan within the coming year. She also prescribed an antibiotic ointment for my belly button (it worked), estrogen cream and a urogynecology referral for ongoing vaginal and urinary discomfort, a referral to physical therapy for problems with leg and back pain, and an order for repeat blood work. The labs and referral appointments had to be postponed, and there was nothing else for me to do. My anxiety abated, and my cautious optimism returned. Michael and I enjoyed our leisure time at home, grateful that we were safe and comfortable and able to get out for daily walks in the country.

Fast forward to June blood work results…

My platelets dropped another 100k since February and were now slightly below the bottom of the normal reference range. In addition, my red blood count dropped slightly below normal, and my lymphocyte percentage was high plus a few other changes from my usual. Panic returned with a vengeance! I emailed both my transplant “farting rainbows” doctor and my trusted hematologist with copies of my results. The former replied, “All is well. I am not in the least concerned by these counts. Counts bounce around and lots of things, like viral illness, can make them go down a little. I know that once you have cancer you are always worried about it returning, but it is almost 10 years….” He always seems a bit condescending. Dr. Bahrani, however, took my concerns more seriously, “I will have the office call you and move up your appointment. It will be the first week of July as I am off until end of June. Please have hopkins fax me your MRI result.”

Michael summarized my visit with Dr. Bahrani in his post a couple of weeks ago. My counts were about the same as last month. My blood looked fine under the microscope, and my flow cytometry came back good ten days later. I’ll continue monthly labs for the next six months, hoping my counts have stabilized again. Watch and wait. We may never know what caused the drop. Such is the life of a cancer/BMT survivor. I went into the appointment fearing a death sentence and emerged on parole. Life is good once again.

xoxo, Karen

p.s. I also had a telemedicine pulmonary appointment in June plus a mammogram and two pelvic exams (urogynecology specialist and annual gynecology) first week of July. Pulmonary recommended routine LFTs (lung function tests) sometime this summer. Both gyns recommended continued use of vaginal estrogen cream and more fiber in my diet. My mammogram was good. My PAP showed atypical cells but my HPV test was negative so I’ll be retested in one year. This was a bit worrisome until I read:

Atypical squamous cells of undetermined significance (ASCUS). Squamous cells are thin and flat and grow on the surface of a healthy cervix. In the case of ASCUS, the Pap smear reveals slightly abnormal squamous cells, but the changes don’t clearly suggest that precancerous cells are present. If no high-risk viruses [HPV] are present, the abnormal cells found as a result of the test aren’t of great concern.

Don’t forget to name the two songs in this post and the three in Michael’s post!

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