Posted by: Mary Crocco | September 2, 2013

YAY!!!

Sept. 1, 2013

August was a series of doctor visits, which became way out of control. If ever there was a taxing month Living with CML, it was August.

To my surprise, I ended up figuring out what was wrong with my stomach – on my own! Yup, that’s right. After a visit or two to the oncologist, gastroenterologist, and primary doctor, I stumbled upon the answer. Iron supplements were the cause of my daily suffering.

Sitting in the chemotherapy room, with a Reclast infusion shooting through my veins, (I have osteoporosis of the spine/hip) I noticed a woman receiving an IV that looked odd. Asking a nurse, I was told it was iron. Inquiring why someone would need an IV of iron was like a slap in the face . . . ‘because some people cannot tolerate iron any other way,’ she said. Sirens flared, alarms sounded – there will be no more iron. Hard to believe, but there hasn’t been one day since I’ve removed iron from my regimen of pills, that I’ve been sick. Who knew? Certainly not any of my doctors.

If my blood work shows an iron deficiency (which was the original reason for the supplement), I’ll worry about it when the day arrives. An IV may be in order, but for now, I’m enjoying not being sick every single god damn day. It’s a wonderful feeling.

My follow up visit to the gastroenterologist showed the RX worked, no more visits. Yay!

I had a mammogram and the results came back revealing the need for an ultrasound and a more intense second mammogram. That was another difficult week as the thought of breast cancer was overwhelming. The results were nothing of the kind. It was overlapping tissue and that was it. Yay!

I had been very dizzy for over ten days, so I went to my ENT. Diagnosis: BPPV. After three sessions of treatment, it’s gone. Doctor said it may return, and I replied, ‘who cares, it’s not life threatening and I know how to fix it.’ I don’t have to return to my ENT. Yay!

My primary doctor ordered a CT scan and ultrasound for the pain in my back. It was progressing to the extent of debilitating pain, resulting in not being able to sit and write – hell I couldn’t even stand. Prescribed physical therapy worked. No need to return. Yay!

Sitting and typing without excruciating pain is awesome. Discomfort, but no pain, is doable. Stretching exercises in and out of a therapy pool is very doable. Yay!

August was hell, absolute hell, but it’s OVER.

Being able to attend my son’s show for his second CD release was wonderful. Booking a flight to see my grandson for the second week in September, registering for writing classes in September and October, and attending a Writer’s Conference in October is incredible. Yay!

There’s lab work scheduled for September for a visit to the oncologist in October. However, I will call on Tuesday and insist rescheduling the visits to December. With an overabundance of labs taken in August, there’s no reason to keep a scheduled visit made six months ago.

Moving the visits to December would mean NO doctor visits scheduled for September and October. YAY!

Now I can devote my time to editing my novel! My coach suggested an additional 20,000 words in narrative, my current task. I also wrote a 5,000 word short story to enter in a contest in October. Editing the story in between my novel, is great fun.

I feel great! Love not getting sick daily! Even better, looking at a calendar with NO doctor visits scheduled for two months! What a feeling!

Getting B2N! YAY!

Thanks for reading!

Mary

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Responses

  1. Hi Mary,
    I just wanted to tell you how refreshing it is to find a fellw CMLer who has experienced the same cazy, on and off symptoms that I have ALL THE TIME. I’m a bit different in that I had lymphoma right before my leukemia was diagnosed (and I’m only 32), but I hate the ongoing side effects. I have to deal with both residual side effects from IV chemotherapy for 4.5 months and now with compounding side effects from the CML medication. I’m on a 200 mg dose of Tasinga twice a day and sometimes I feel great but other days I feel like I’ve been hit by a truck. I hate it. I finally switched doctors and am at MD Anderson now with Dr. Jorge Cortes because he is the only doctor I’ve met that seems to care about side effects. Most doctors just brush them away and live in some kind of fantasy land thinking that these TKIs are a walk in the park. Thank you so much for sharing your story! It’s just comforting in some small way to know that I’m not alone and that I’m not crazy for having to see a billion different doctors!

  2. Hi Rachel,
    It means just as much to me to hear from a fellow CMLer who is experiencing crazy side effects. I’m sorry you had lymphoma before the CML diagnosis, that’s hell before hell!
    The hit by a truck feeling is the worst, isn’t it? One day we feel like we are getting stronger and can do things, then out of nowhere, the truck hits. 😦
    I’m glad you switched doctors, keep me updated on how you are being treated and how you are feeling.
    You are not alone, or crazy, at least not to me! 🙂
    So glad I helped you, as that is the purpose in writing my blog. You’ve made it worthwhile and I thank YOU for that!
    Take care of yourself, Rachel, and I hope to hear from you again.
    Mary


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