Posted by: Mary Crocco | May 2, 2013

May Madness?!

April CML pic

May 2, 2013

My April Fool’s Day left me confused. All my test results showed there was nothing wrong. As of today, my oncologist shares my confusion.

All I was left to do was return in a month for a follow up. I said I didn’t want an appointment, so we agreed if things got bad I’d call and come in.

The following two weeks I was doing okay. I even got back to the therapy pool for exercise. It felt great to feel normal again.

There was even a day where my hands weren’t cramped, my fingers weren’t cracked, my back didn’t hurt, and my stomach was behaving, so I could actually sit down and write at length. I added 6,500 words to my book! It was the greatest feeling in the world. I’m almost finished writing my first draft.

My son and his family came for a visit the weekend of April 19th. Playing with my twenty-two month old grandson was wonderful as always.

During the following week my stomach started up again. I was suffering the same symptoms as I did earlier in April. Being all the test results showed no cause for this, I decided to see a gastroenterologist, which is what was suggested earlier by my rheumatologist and oncologist. I just didn’t want yet another doctor; I can’t tell you how depressing this is. However, it has to be done, the episodes last for hours and hours. It’s just plain crazy.

My arthritis became worse too, and after waking up not being able to move, I figured maybe I should start taking my pain meds as a preventative measure, just for a couple of days.

My son is graduating from UNR with a MSF on May 17th and I have had tickets for months for this special occasion. I had to tell him I couldn’t go. There is no way I can fly and then participate in the festivities like this; I won’t be a spectacle and/or a problem. I am so disappointed and sad over this. I told him early on so he could prepare to take time off from work to stay home with his son. I was going to stay a few days as I always do when I visit.

Hoping the gastroenterologist visit on May 7th (my birthday) will be successful in providing a diagnosis and treatment, maybe I will be able to attend my son’s special day. My fingers are crossed.

I was invited to a book launching party from a former writing critique group member who just published her book. I had to RSVP no for that too.

My other son planned dinner and a movie for my birthday, I had to say no. Having such an unpredictable problem, going anywhere is impossible. I suggested pizza and a movie home, which is just as perfect for me.

If I didn’t have to eat a full meal with Gleevec, trust me, I wouldn’t eat at all. Then maybe my stomach would behave. Irrational, I know, but it hurts so much after I eat and for so long, it creates thinking extreme ideas.

My eye has been a total mess most of the month. I had a short reprieve from the discomfort, and have had a scheduled appointment set up since my last visit. This is absolutely ridiculous. There must be a diagnosis so it can be treated, it looks horrible and is so sore and uncomfortable. I have a feeling I will be given the prescription that ophthalmologists have avoided giving me because of Gleevec. But we’ve tried everything else.

So once again I have more doctor visits for the month of May. I have to get this stomach problem taken care of; it’s as ridiculous as my eye problem. I postponed my dental visit in April – again, no way do I want to be sitting in a dental chair and have my stomach act up.

After my gastroenterologist visit I’m anxious to see if I get a diagnosis and can be treated so I can ‘see’ my son receive his MSF. And ‘see’ is the right word, after my ophthalmologist visit.

I’m so excited to finish the first draft of my historical novel, and I want to get back to the pool for my arthritis, it’s so much better than taking pills.

April is always a double-edged sword for me since 2001. My oldest son would have been forty-one years old, but instead I visit him in a cemetery. And his brother turned thirty-eight, the day before his brother’s birthday.

Dealing with stress and believing my own diagnosis that it was the damn flu shot in January that is the cause of my stomach problem, I sure hope May is a better month.

Thanks for reading! 

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Responses

  1. Dear Mary, So sorry that you aren’t feeling well. When my husband was on Gleevec he could only handle chicken or eggs and absolutely everything else gave him extreme gut distress. He is on Sprycel now and can eat most things and quality of life has vastly improved. His energy level is good most days. I know that CML and the drugs seem to do such different things with each and every person. Husband is also on two different eye drop medicines. Guess that comes with the territory. Hope you feel well enough to see your son graduate. Keep checking with all those Drs. While it is a drag to have to have another appointment you must turn over every rock when searching for a remedy. Take care.

  2. Thank you for your kind words, Carolyn. I wish your husband more good days than bad, and for you to have support as a caregiver. 🙂 Take care. Keep me updated. 🙂


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