The other possible titles for this post-
- I've got 99 health problems, and leukemia is only one. But actually the other 98 are probably related.
- I gave my principal a doctor's note saying I should be permitted to wear tennis shoes, and I later cried.
As you know, my first 10 years with leukemia and it's treatment had its own set of problems that I finally learned how to live with, good bad or otherwise– fatigue, nausea, bone pain (mainly in legs/groin), busted blood vessels in my eyes, and swelling are the norm, and other fun stuff along the way like hair thinning, gum problems, food sensitivities. I’ve learned to live with and accept not feeling good the majority of my days. And My family has learned there’s a difference between me not feeling good and me being sick. Me being sick is normal people sick– cold, flu, stomach bug, etc. But that is actually rare for me, which is wild considering the fact that my target chemo treatment keeps my white and red blood cells super low. The few I have sure are strong. But not feeling well? That’s me being nauseous, fatigued, bone pain. All the things. That’s almost daily. I take at least one zofran every, single, day. But I’ve learned how to manage, I always have my apple sauce in tow, I’ve learned my limits, and say no (most times) to those things that will push my body past what it can handle, and just mentally have learned to live with it. Because It’s a small price to pay in order to stay alive, because without that treatment, I’ve got 3-5 years.
But then came year 11 this past year. And boy did it come with a vengeance. And it’s, been, frustrating.The short version– I now have chronic left hip pain, had a lumpectomy (it was benign) that I’m still dealing with complications from (seroma), and have moderate carpal tunnel and ankle/wrist joint/bone pain. I haven’t been able to sleep on my left side for over 10 months due to pain in my hip and breast, am limited what I can do with my wrists such as driving for long periods of time and/or lift weights without my wrists hurting, and can only wear tennis shoes with minimal discomfort to my hip and ankle joints/bones. All of this just this year. And this is on top of the other fun leukemia side effects I deal with.
Between January and June of this year when this all began, I had over 20 doctors appointments and tests ran, to include : hip MRI, brain MRI, multiple breast MRIs, ultrasounds and mammograms (I'm high risk for breast cancer due to my mom being diagnosed in her early 40s), two nerve studies, hip xray, steroid injections in my wrist, PT, lumpectomy, on top of my regular oncologist appointments and lab work for CML monitoring.
Trying to juggle the mental and physical toll of dealing with these issues and these appointments with teaching and being a mom has been so very difficult. I hate missing school so I would only do a half day as needed or run out on my planning which led to days like this–
- Having a brain MRI done in the morning and getting the results to find you have some unspecified white matter not knowing what that meant but still had to go back to school to facilitate a guest panel day for students
- Realizing mid-lecture over globalization you have a complication from surgery when you endure the worst pain and swelling in your breast and having to hide it until class is over and then call your doctor
- Finding out at an appointment you are going to have to have surgery to remove a mass then immediately going back to school to get your kids excited about a new project
- Checking your CML test results during lunch (because you've done that the last 10 years) to find out you lost your leukemia treatment response (yeah that happened too during all of this– but it’s good now) and acting like everything is normal in front of your students while trying to process the fact that your treatment may have stopped working.
Total mental toll. Especially not getting the answers you want. I was hoping we would find a cause for all of it, any of it, so we could fix it and move on. Because that's all I want. To be/feel 'normal'. But that's another issue with having such a rare disease, there isn't a specialist in Kentucky so I'm left going to different doctors for different things, I don't have just one looking at all the things going on and trying to figure it out. Instead, I'm the one gathering the results, the opinions of those non-blood cancer doctors, and trying to make sense of it. So when the tests are essentially inconclusive, I can really only assume the cause – my leukemia. I just don’t want to hear it. Leukemia impacts your bones. The chemo treatment I take daily for it impacts your nerves and bones since it's killing the cancer in my bone marrow. Most all of this is bone/nerve related. 10 years of taking a chemo pill daily is bound to take its toll. I’ve always known it was hard on my body and known it will only get worse. But now that it’s getting worse, I’m having a hard time accepting it. Really hard.
And that’s where I'm at. In the midst of my frustration, I am learning how to deal with this new normal, just like I did my first 10 years, but honestly not with as much optimism. I did get steroid injections in my wrists which has helped (I can now sleep sleep at night), but feel surgery will soon be on the table. I now wear tennis shoes to school (talk about a struggle– me who has worn heels almost daily for the last 17 years realizing I just can’t anymore– I cried after I gave that doctor’s note to my principal which sounds silly but it’s just another thing I can’t do anymore and handing him that note made it real) and now the hip pain is usually mild, only moderate on occasion.
It’s a new season, whether I like it or not.
Confession:
This blog is like a diary to me and so as I was looking through old blog posts, I came across this picture of Talon that was taken fall of when I was diagnosed–
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