Posted by: Mary Crocco | March 1, 2012

“You have a hole in your ear.”

First let me say . . . thank you for taking the time to read my blog. 

March 1, 2012

My Living with CML (Chronic Myelogenous Leukemia)

“You have a hole in your ear.”

Feb. 21, 2012

Well, I got in a couple of weeks at the pool. Lots of foot cramps in the water, had to leave earlier than I would have liked a few times, but at least I got there.

My ear wasn’t feeling right, so I called my primary doctor and got the referral to the ENT (Ear, Nose, and Throat) specialist. I could get an appointment in his office on the other side of town for the 28th or in a month at his nearby office. I made the appointment for the 28th.

Feb. 21, 2012

I made a visit to the nearby office, however, for two reasons: First, to see if my personal appearance would land me an appointment at this office because I hate driving so far. My hopes were a last minute cancellation. The receptionist told me there was none and he was only at this office on Wednesdays. She would call if there was a cancellation for tomorrow, the 22nd. No cancels, so I would go to his other office across town.

My second reason was to pick up the new patient packet so I could fill it out at home. As I mentioned earlier, my hands cramp up when I use a pen or pencil. So she handed me a packet of nine pages.

I really miss going to the pool. My knees get so stiff without the benefit of my water exercises. I was using cotton in both ears, of course, but I just knew something wasn’t right. One should feel their heartbeat near their heart, not their ear! My ear was pulsating! Not good.

Feb. 28, 2012

I met my new ENT doctor. “So, tell me what’s going on with your ear,” he says.

After I explain how I feel he says, “Let’s go into the room next door so I can have a look.”

I sit down in the chair as he swings around his trusty ear probe and inserts it into my right ear. “Oh, you have a perforated eardrum. You have a hole in your ear.” He continues, “You also have a lot of ear drop build up from your prescription. I’m going to remove that right now.”

It only takes a couple of minutes. I’m supposed to feel unclogged. I don’t. I know I should, but I don’t.

“Do you feel any difference?”

I tell him, “I feel like you did something, but I don’t feel unclogged yet.”

He asks me about my CML as he writes down my responses. Mostly he was interested in Gleevec. “Are you in remission?” he asks concerned.

“Oh yeah, I am, since 2004. Gleevec keeps me alive,” I say with conviction.

The doctor explains the future of my eardrum. “It can heal itself over time if it is kept absolutely dry.

“Can I use the athletic pool to exercise, and can I fly, doctor?” my voice rising as I’m afraid of his answer. But I’m surprised to hear him say, “You can use the pool if you immerse cotton balls in Vaseline and mold it to your outer ear,” he explains.

“Oh, thank god,” I’m relieved.

“As for flying, yes, sure you can fly. As a matter of fact, you are in much better shape than others because you have a hole in your ear. There is nothing to pop. Your other ear may pop,” chuckles the doctor.

“Really, well, that’s great news. I was concerned about flying, so this is terrific!”

“I want to see you in 2 months, unless something comes up and you feel you need to see me earlier. I’ll see if there has been any progress in your eardrum,” and the doctor walks me out.

So . . . that’s the story!

I’ll go back to the pool. I wanted to go yesterday, the 29th, but I wasn’t feeling 100%. Well, that’s ridiculous. I haven’t felt 100% in many years. But my ear still felt a little clogged. At least it wasn’t pulsating. So I figured maybe the clogged feeling is just because there’s a hole in my eardrum. I’ll give it time like the doctor said. And I will start the pool again on Friday, hopefully.

So I let my sons know the update. Rich wanted me to visit him and his family and we were waiting to see if I could fly. So I booked my flight for March 16 – 23rd.

I also booked a flight to see my mother in Long Island for April 24 – May 1st. She has not been doing well. I saw her last for her 81st birthday in October.

I have a date with a girlfriend I haven’t seen in years this Saturday. We’ll meet for High Tea. It sounds ridiculous, but this is big for me. I haven’t made any effort to see anyone in so long, except my sons of course. Bob lives here in Las Vegas and I see him all the time. Rich lives in Sparks. I love visiting him, his wife, and my new grandson. Not sure what possessed me to initiate seeing my friend, but I’m looking forward to it. She leads a very active and exciting life. It’s always fun to hear about her travels.

I joined a Meetup group a while back. Every time there is an event that looks good, I RSVP a yes, then when the day arrives, I’m not feeling well. But I received an event email on Saturday night for a day trip to Lake Havasu City, AZ. for March 10th. I can’t describe how excited I was! I used to live in LHC in the late 70’s and 1980.

Being I know the city, I felt confident I could take this trip. I received an email asking to call the coordinator. I called on Sunday and she told me to send the check for $115 on Monday. When I got up on Monday, there was an email saying the trip was already booked, not to send the check.

I was and still am disappointed. My son, Bob, said he would take me and we would have an even better time. I’m thinking about it. I know we would have fun, but I don’t like my kids feeling bad for me. There will be other trips. Then Rich said we should all go to LHC in the summer. So, we’ll see! I have wonderful sons, did I mention that?!

I’m looking forward to High Tea on Saturday with my friend and to my visit to my sons on the 16th. I won’t lie, I’m nervous about flying. I know what the doctor said, but being I’m still clogged I’m hesitant. We’ll see.

I have lab work scheduled on the 27th, as usual a week before a CML 6 month visit to my oncologist. That appointment is April 3rd.

So that’s my month of February Living with CML. It takes a while to type because of the hand cramps. My son, Bob, bought me the Dragon Naturally Speaking Program. It works great and helps a lot. Still, just to edit, they cramp up and the pain is quite unbearable.

Only one stomachache this month!  The usual daily fatigue.

But once again, I remind myself that all in all, I am lucky to be alive. Our (people with CML) prognosis was only 5 years after a diagnosis of CML. Today, because of Gleevec, and other new drugs, we have a good 20 years, says my oncologist.

So I modify and I live with CML.

Wish me luck flying! 

Please feel free to leave a comment. I welcome them and once again I thank you for taking the time to read my blog. 

******* A special thank you to my friends, Janet in Arizona, and Bill in Illinois, who check on me if they don’t see a book review or a new blog post in a while. You have no idea how much it means to me!

Take care until next month!

Mary

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Responses

  1. I always read your blog, I’m so happy you’re doing so well. So sorry I haven’t commented in a while, been a bit swamped with the newborn. I love that your flying, and seeing your friends. We’ll have to get you on a plane to London soon! 😉

    -Iz xo

  2. Hi Bella! Oh I certainly know you are busy with Iggy! I’m thrilled you still read my blog. Thank you!
    I doubt a visit to London will ever happen, but I’ll think positive 🙂 The flight to Richie’s is not too bad, but the flight to my mother’s is a killer. Southwest doesn’t have non-stop flights anymore, so it makes it really hard on me. But it’s my mom, so it’s the only way I can be with her.
    I follow you on Facebook. So glad you and your family are doing well and are so happy!
    Thanks for reading and commenting!
    Love, Aunt Mary

  3. My husband has CML and is on Gleevec. His Dr. mentioned recently that he could think about going off drug as his bloodwork has been good for a while. Hummm..sure would be nice to get a break from the cramps and stomach problems he has. Nice to find your blog.

    • I’ve heard this may be an option someday, but I would be scared to death to stop taking Gleevec. I would love to keep in touch. My 6 month appointment is this coming Monday. Yes, the cramps and stomach aches are awful. The fatigue is extremely hard. Right now my elbow joint is killing me! Joint pains are weird.
      Thank you so much for finding my blog and especially commenting. I am thrilled someone read it! Feel free to email at any time. 🙂

  4. What do you eat? might sound like a silly question but husband can only seem to tolerate chicken, eggs and some fish. No startches, no spices, no fruits, no milk or milk products. Yikes ..which came first the chicken or the egg:)?

  5. I replied in an email Carolyn. 🙂


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