Well Pancreas, It Was Nice To Know You

Sigh.  I’ve known something was wrong since my blood sugars started going insane while I was on chemotherapy for leukemia.  For the year on chemo pills methotrexate, tretinoin, and M6mercaptopurine, and the prior 50 doses of arsenic (IV), my blood sugars have been impossible to control if I ate anything at all.  So, I did some reading and found that the immunosuppression effects of chemo may have caused enough damage to my pancreas that it no longer produces any insulin.  The weight I gained on chemo make my body resist any insulin (‘homemade’ or shots).  So my blood sugars are insane.

Let me rephrase that.  I can’t get my blood sugars to the level of control I had prior to the chemo, which was essentially that of someone without diabetes.  I took 4-5 insulin shots a day to keep it ‘normal’, but that was a small price to pay to buy some insurance for my eyes, kidneys, and legs.  My last HgA1C (the number that shows 3 month ‘average’ blood sugar, that is helpful for showing overall control) wasn’t that bad in February 2012.  But it was up by 1.5 points from pre-chemo.  That’s not acceptable.

While I was still on the chemo pills, I had days when my blood sugars would actually go into the 300s.  It hasn’t been that high since I was diagnosed in 1995.  Most days I went into the 200s.  My ‘old’ normal was to have a fasting blood sugar between 65-85mg/dl, and a rare 100-105mg/dl.   Now, with tight monitoring over the last week (and a trial of different insulin dosing patterns), I can’t get it below 130mg/dl.  That’s not acceptable.  I’ve been ‘eye-balling’ my carbohydrate intake for months, but started writing down everything this week.  It’s not what I’m eating.

My weight gain since being on chemo has also been an issue.  Insulin stores fat (and I’ve had to use more insulin).  Fat makes the body resist insulin so it needs more insulin; it’s a vicious cycle.  I’ve been eating around 1400 calories, and I’m not losing weight (I was told to consume 1400-1600, so I’ve been at the low end).  But I’m having to use a lot of insulin, so what I’m eating is being stored.

I’ve seen my internal medicine (primary care) doctor regularly, and e-mailed her with what has been going on.  She confirmed that the chemo could have made my pancreas useless as far as insulin goes.  I’ve been resistant to seeing any of the local endocrinologists because of bad experience in the past.  The one I saw seemed to want things to get ‘bad’ on paper before doing anything  proactively.  I don’t work that way.  When I see trends going south, I want to do something to fix it.

What is the rationale behind watching something get to the undesirable stage before doing something?  When someone has a heart attack, does the doctor wait until they need CPR before doing anything? NO !  I don’t want vision problems.  I don’t want to go on dialysis. And I don’t want anything amputated.  I want to minimize my risks by taking care of things before I have other symptoms or complications.

I got an e-mail from my primary doc this morning.  She wants to refer me to an endocrinologist, and told me that we have a Joslin Diabetes Center doc here in town.  The Joslin Diabetes Center is the biggest researcher of diabetes in the world.  I’ve known about them for at least 15 years, and have read some of their older books.  They are ‘da bomb !   I told her I’d be happy to see someone that follows their protocols. No problem.  SO there is hope. There is someone with direct access to the biggest collection of data on diabetes. I can’t ask for more than that.

I’ll be doing even tighter monitoring and recording until I see this new doctor.  I want to have the most amount of information I can to give to him/her at the first appointment.  There’s no point in going in to be told to keep track of things, just to go back again if I can have it to start with.  I have to get this blood sugar business taken care of.  I’m enough of a medical train wreck.  If I can DO something, I want to get after it, and get it done.

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8 thoughts on “Well Pancreas, It Was Nice To Know You

  1. I’m sorry that there has to be one more thing added to your overloaded medical plate. Hoping that there’s something they can come up with to help. It wouldn’t be happening if you weren’t strong enough to handle it. That really sucks though.

  2. Great to heat that you will be seeing an authority on the subject. I hope the best.

    I just had treatment 6 of 12 of FolFox and tonight I got out of bed and experienced double vision for a short time. I wonder if that is a side effect of chemo?

    • Hmm. I never had FolFox- but I’d check with the onc on the double vision. I hope it’s better today 🙂 Your family is in my prayers for both your treatments, and also the loss of your cousin. ❤

  3. It must really help though that you actually understand all of this stuff and the interactions especially. I keep reading how we should all be our own health advocates but this stuff is complicated. Jill think of you and just hoping you can get on top of it all x

    • Hey, Susie !
      Yeah, it does help that I’m a nurse. I joke about being disabled but needing to be an RN to just keep up with my own stuff. Sometimes there are doctors out there who are intimidated that I know more about dysautonomia than they do but my regular doc is familiar with it, and I SO appreciate someone who has at least heard of it. Now with the diabetes going nuts, I’m glad to be seeing an expert, as I’ve run out of my own tricks.

      We’ll get through our stuff… it’s nice to have support, even if the diseases are different, eh? 🙂

      • The support has been crucial for me Jill, this whole journey, i joe about it because thats my coping mechanism, but I’ve cried too, a lot. I really do feel like my real body was stolen one night and replaced by an impostors. Im confused and dazed, but people like you help me get thought it and I want to be able to pay that forward somehow too. Im glad we’ve met, virtually at least. xx

  4. I use humor also- it’s either that or cry (which I don’t do gracefully). I watched Funniest Home Videos for 3 hours every day in the hospital those first 6 weeks that i was in for the leukemia. It saved my sanity! I’m glad we met online as well 🙂 xx I have no friends here that I have any contact with other than on FB because I’m limited by the other stuff. SO, gotta make the best of it 🙂

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