Posted by: Mary Crocco | February 1, 2012

February 1, 2012

January 11, 2012

I thanked my doctor for seeing me and she smiled while asking how I was feeling. I said I was much better than my last visit (Jan. 2nd), but my right ear is still clogged and my cough is lingering. I didn’t bother mentioning the extra fatigue because it’s all part of Living with CML.

The doctor examined my ear and said there is improvement and I can start a prescription for ear drops. They should be taken for 5 days. She didn’t give them to me last time because she wanted to start me on antibiotics first. Her first prescription choice I couldn’t take because I’m allergic to Levaquin. This happens most of the time. She always has to give me her 2nd or 3rd choice of a prescription. It’s either an interaction with Gleevec, or my allergy.

If my ear isn’t noticeably better in 10 days she will squeeze me in for a visit and most likely refer me to a specialist. No pool until my ear is completely healed.

It’s been 10 days so I had to make an appointment as my ear was still clogged. I sure don’t want to see a specialist. So much is involved with new doctors having CML. All the paperwork is too much for me to fill out in the office because my biggest side effect from Gleevec is cramps. My hands and feet are affected on a daily basis. So I can’t complete forms at one time because my hands cramp after just a few words.

It’s embarrassing and receptionists don’t always understand. I always call ahead and try to pick up forms to complete at home. This is the only way I can have it ready before I see a new doctor. But not all doctor offices comply with my request, so it’s a hassle and humiliating to say the least.

Even though it’s been a little over 8 years since being diagnosed with CML, I still find it difficult Living with CML. It’s hardest when I have to tell someone new the reason I can’t do something, whatever it is it’s usually because of a side effect of Gleevec. Of course I don’t even bother explaining to anyone unless it’s something I have to do and I need to explain. This is one of the main reasons I’ve become a hermit. It’s easier to stay home and deal with the side effects then to venture out and have to explain. Even worse, have one of my other side effects kick in. Being home is safe. When I do go out, there is so much preparation for my body; I question whether or not it’s worth it. Hence, I stay home a lot.

Okay, I’m back. Tissues are my very best friends. (Sound familiar?)

I find when I write my true feelings, like in the last paragraph, I cry.

January 24, 2012

I realized how bad I’d been feeling when the receptionist asked me for my insurance cards. I said nothing had changed since my last visit, but she said they now have to copy cards on every visit. I said okay and reached into my pocketbook for my wallet. The cards were nowhere to be found. She said I probably couldn’t see the doctor today, I would have to reschedule when I found my cards. I asked if she could make an exception as I would return with the cards as soon as I got home and found them.

Now you have to understand, I’m extremely organized. This was a foreign concept to me. Since being diagnosed with CML, my life has been nothing but paperwork. I retired from teaching which meant changing insurances and just life itself with CML requires forms and a lot of paperwork. I have never misplaced any papers, let alone not carried my insurance cards.

The receptionist said she would ask the office manager. She returned in about three minutes and said the doctor would see me since I was there so recently. I was extremely grateful.

I racked my brain while in the waiting room. I figured I must have left the cards on my desk. I was wrong! I looked in my file cabinet, where I can easily reach for any paper. I couldn’t figure out what I did with these cards. I retraced the last week or so, and remembered I had gone to Office Depot to copy forms for the Leukemia and Lymphoma Society. Sure enough I called and asked if on Jan. 3rd they left my cards in their copier. They had! They now sat in a lost and found drawer for weeks. All I could think of was identity theft as the cards clearly display my name and Social Security number.

Okay, so now I’m in the examining room waiting for my doctor. She comes in and notices my demeanor right away. She saw I was much more fatigued, even though my ear was doing better, though still somewhat clogged. She asked if I missed my pool exercises. I told her she was right-on. I was feeling the loss of the pool more than I could believe.

After examining my ear, she said it is scarred quite a bit (from many years of ear aches), but no infection or swelling, so to continue the drops until they are done. The best news was I didn’t have to see a specialist. She recommended I don’t use the pool until the drops are finished.

So this weekend my son, daughter-in-law and my 7 month old grandson came to visit to celebrate my 24 year old son’s birthday. We had a great visit. I walked my grandson in his stroller on Saturday and Sunday. I absolutely LOVE walking him!

I knew I would pay for this on Monday as I have bum knees. I haven’t been to the pool since Dec. 20th; and I knew this walking would kill my knees. So Sunday night was hell but Monday wasn’t so bad.

Anyway, I have a bit more of the prescription ear drops left, but I think I will use cotton in my ears and get to the pool tomorrow! I’m really looking forward to moving my body in the warm water. It helps my knees more than I can tell you. It’s the only exercise I get and I love going.

Oh no, this happens a lot, I just realized I haven’t gotten up from my computer while writing this and it hurts so much when I don’t take breaks! Now my knees have nothing to do with Living with CML, but it does add to my daily discomfort.

So I won’t swim free style or do the back stroke as this may be asking for trouble getting water in my ears. But modifying has been a way of life since Living with CML, so nothing new!

I hope to have a successful month exercising in the pool and healing my ear.

January 31, 2012

I descended the steps into liquid paradise . . .



  1. Hello Mary. after reading your blog I have to reply and say I know exactly how you are feeling. I was diagnosed 1 year ago and have been on Gleevec. I have so many mixed feelings….thankful that it was found and there is medicine to keep the disease in check but so confused over the many, many side effects. Nothing that I can’t live with but it certainly has changed my life. My biggest side effects are extreme chills and then extreme heat flashes. They are the current side effects. They change I have noticed…in a month or two I will have new ones….crazy. I wish you well.

  2. I sent you an e-mail. Thanks so much for reading and commenting! I often wonder if I should continue writing.

    Let’s keep in touch 🙂

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