March is coming to an end and I’ve mixed feelings about April Fool’s Day. Will my doctor visit to my oncologist on April 1st leave me laughing or crying?
It has been a very hard month. I’ve had stomach problems that have progressed for two months on and off. I kept thinking each episode would be the last and all would be better tomorrow. As of today, March 29th, tomorrow hasn’t arrived yet, in fact the episodes have escalated from an hour to four hours.
Living with CML I’m used to the side effects of Gleevec, after all, in November it will be ten years I’ve been living with Chronic Myeloid Leukemia. But the nausea and stomach pain has increased in intensity and frequency.
An appointment to my rheumatologist on March 18th concluded with me agreeing to call my oncologist for an appointment. The doctor said I shouldn’t be this sick for two months. My scheduled six month visit to my oncologist was for April 15th, so in my mind I figured I could wait. I thought it would go away and I’d feel better. Walking into the Comprehensive Cancer Center is enough to delay a visit.
Gleevec keeps my white blood cells under control so well that I only see my oncologist every six months to review my blood work, which is drawn two weeks before a visit. I dreaded making an additional visit. However, I did call the Center and spoke to my oncologist’s nurse about what was going on and an appointment was set up for the 22nd.
During the week I had an unexpected problem. My rheumatologist weaned me off Cymbalta and my last pills were to be cut in half for four days and that was it for this drug. I was happy to decrease my pills, even if it was only one.
What I didn’t expect was the side effect of doing just that. It was horrible. I’ve never experienced such a reaction. I was lethargic, light-headed, dizzy, and experienced overwhelming sadness. This lasted an entire week, even though I still get a little light headed. I vow never to take that drug again. I don’t care how much my Fibromyalgia acts up.
I’ll share an incident that happened when I ventured out. PBS invited me to a two hour event which included pre-screening a movie followed by a discussion. I had previously RSVP’d but was now conflicted about attending. The main reason I confirmed my attendance earlier was because it seemed beneficial to my research for my historical novel. So, I decided to go, taking every precaution to avoid an incident; not eating, not too much tea, and a lot of rest. By the time I arrived I was already exhausted.
There was a lovely spread offered, including tea, but as always I never ate at an event, this time I avoided the water and tea, which is my beverage of choice all day long. I’m always afraid of my stomach’s reaction, and currently suffering with whatever was wrong with my stomach for these past two months, I didn’t take a chance.
Being the movie was a preview, it was brief, and I looked forward to the discussion because these were women who not only taught Native American studies, but were Native American, and their stories were sure to enrich my research.
Three quarters into the event, I couldn’t sit in the hard chair any longer, and as usual, I was the first to leave. All I missed was the audience Q&A segment, which I never find stimulating. I was so tired when I got home that I slept for twenty hours!
Two days later on the 22nd I walked into the Cancer Center. It’s packed with patients using wheelchairs, walkers, and oxygen tanks, some wearing kerchiefs and wigs; it’s a nightmare to me. I . . . gotta take a break as the tears are falling.
. . . The nightmare is not only that I may be one of those patients one day, but that I am alone. Sure I have two terrific sons, but I don’t drag them into my darkest days, and they rarely read my blog. But not having . . . break.
Not having someone by my side throughout my struggle with CML is difficult. It makes me unbelievably sad to know this is how it will be until I die. It’s hard not to be aware of the cancer patients as they support their husbands and wives while waiting for treatment. Before I was diagnosed (Nov. 03) I enjoyed life. I was a teacher, dated and had fun. With the side effects of my oral chemo drug, Gleevec, I couldn’t work anymore, and can’t do much of anything as my arthritis progresses daily. As far as dating, I’m certain no one wants to start a relationship with an unhealthy person.
My only joy was exercising in the therapy pool, but my stomach problem has kept me from going since the middle of January. I still wonder if all of this is due to getting that damn flu shot on January 13th.
(Deep breaths, loud sigh)
The doctor’s assistant took my vitals in the waiting room and told me the lab would call in a couple of minutes to draw blood. The Center was so busy and they closed in an hour, which is why my vitals were taken in the waiting room. Five minutes passed when the lab called me. Shortly after, I was talking with my oncologist’s intern.
I was asked to elaborate on my symptoms, as she had been briefed by the nurse. Having some lab results and giving me a physical exam, she concluded in her opinion, it wasn’t the leukemia that was the problem. But she couldn’t be sure until all the results were in and certain results took a week or so. This was all familiar to me, as it occurs every six months. I left with stool specimen instructions, which does not occur every six months.
I’m hopeful because of the intern’s comments – the immediate blood work was good and she didn’t think my stomach problems were from the leukemia. Her opinion was some kind of a stomach virus. She had my oncologist check the labs before I left and he ordered the specimen tests. I didn’t see him but he was kept abreast of my visit as the nurse left twice to speak with him. I was grateful to get squeezed in because they had no openings. He wanted to see me April 1st, so that was fine with me; all the results would be in. As I was leaving, I saw my doctor with a woman patient about my age being walked from an exam room and I recognized the look on her face. Been there, done that, ten years ago.
The following Monday I dropped off the specimens. This time I left with 24 hour urine instructions; however, I couldn’t begin immediately because I had a cup of tea, which contained caffeine. I had to wait three days to be caffeine free.
Today, Friday, I dropped off the specimen. I’m feeling apprehensive about receiving results from these tests, so it will be an anxiety filled weekend. Hence, dreading April Fool’s Day.