It Was Definitely Worth It
It’s been a long time since inability to sleep has plagued me. Usually it is the constant churning of my brain that interrupts my much needed REM sessions. Tis not the case this time. I have for all intents and purposes a steroid “rush-headache” post lower back epidural injections to help lessen back and sciatic pain brought on by scar tissue and muscle changes left from my radiation treatments from years past. Now before you roll your eyes and think to yourself “Oh no, not one of those kind of posts”. You can read on knowing that this post is laced with gratitude and joy with only a few explanatory details of past atrocities inflicted on my body. I think they are important to know to understand the intensity of thankfulness I possess.
My body has been developing long term side effects since the second year after my diagnosis. It’s a gradual thing, really, starting off rather subtly and accumulating over time until they shake you and say “Say? You don’t have cancer growing in you right now, but you still don’t feel good. Why don’t you help a body out here already?” Most I thought I could handle on my own and some I did. I tried strength training for my fatigue and to be honest it worked very little and I found myself at the tender age of 50 drifting to classes for the elderly. Standing chair yoga and water aerobics for arthritics. The people in these classes adopt me straight away like a “token daughter”. I really found that increasing my sleep to 10 hours from 8 helped the most, especially after I had to have rads again (lung spots) 3 years later. After fatigue came an area of COPD in right lung. It’s a small area, but mighty enough to cause pneumonia several times and a pretty wicked wheeze on bad pollen days and, when a a head cold migrates south, some pretty painful bronchitis. A few immunization approved despite my young age and aggressive treatment of anything that remotely resembles a chest cold and I consider this one of my lesser maladies. The biggest repercussions lie in my pelvis and although Pelvic Radiation Disease is not really a recognized syndrome in the USA (YET…I am always working on this), you can believe me when I say this is a very real thing. The longer patients survive the more they learn about what is left in the wake of such intensive, lifesaving treatment. The aching hips came first. They told me it would be this way. Sexual dysfunction came next coupled with PTSD. Because who doesn’t have the life burned out of their girl parts and not feel a little traumatized after? then came chronic urinary tract infections, those are fun. And a recent scare of peeing blood resulted in a quick cystoscopy of my bladder, where I saw for myself that since the one I had 8 years ago that the radiation damage gets worse in there, not better, and I have an increase risk of developing, you guessed it, bladder cancer. Rest assured I remain NED. Next on the list is bilateral avascular necrosis of my femur heads coupled with chronic low back and sciatica. I’ve had my right hip replaced and am trying to get as much time out of my left hip before replacement because guess what? When you cut into tissues that have been forever altered by surgery, radiation and chemotherapy they heal slow and not quite the same. Can you say “PT forever!” Then there is my “little friend” anemia” that brought my blood transfusions last year and iron infusions last week. And finally, the big grand daddy of them all, the hush words, the ones that really rock your world, fecal incontinence. Now this one can be managed by some, but it’s unpredictability is the nemesis here. The fact that I happen to know every decent bathroom in my city and in the surrounding state area, I have thrown out more underwear in public restrooms than I have ever owned, have undergone physical therapy in this area and am willing to consider botox injections in an area that tender speaks to the gravity of the situation. All I can say is thank God my renal function remains intact. In times like these I like to quote from my own Cancer Scriptures. I refrain from calling it a Bible. They are more like The Lost Scrolls
“Inside your pelvis are many bones, muscles, tendons and organs. If that were not so, would I have told you that radiation is going to effect them and wreck havoc on you?” ~ The Lost Scrolls ~ The Cancer Scriptures
Now for the gratitude and joy! You’ve been waiting for this part. I could go on and on about all the amazing things I’v seen and done despite all the side effects that continue to come over 9 years later. It takes me back to the time when I was first diagnosed. My first great influencer in a very bleak situation for me and my family, my radiation oncologist. I have always referred to him has Dr. Cutie and I won’t stop now! It was he that came into my room at the hospital and parted the grief of a devastating diagnosis that could be felt. Kind and gentle with words and then honest about my mindset being important. He told me not to google my cancer. He said “Those are just numbers, Michele, you are not a number and this is your journey.” He described my treatment course perfectly to me. “The first two weeks you will wonder if the machine is even on. The second two weeks you will feel like you have the flu and we can help with that. The last two weeks…well, we will get you through them.” Then I signed a paper that listed all the side effects, long and short term, that had been explained to me. Honestly, I would have signed a paper that said that my head was going to fall off the top of my shoulders if it gave me a shot at living. Those last two weeks were brutal. I remember pleading with Dr. Cutie not to examine me because it hurt so much, but I let him do it for my good during the second two weeks. During the third two weeks, while hospitalized, there he was pleading with me to go back to radiation despite all the burns and pain and hassle of ambulance transport so I wouldn’t break from treatment, and I trusted him and did it for hope of a little longer on this planet feeling the best possible. Look at me now. It’s not perfect and sometimes downright frustrating but I have gotten to see my children grow making their own families and my own marriage has strengthened in ways that can’t be described. I have found my own voice for awareness and advocacy to help with changes to treatments so others can have a better post treatment life after anal cancer.
So I am here to say to my family, those who cared for me through the hell of treatment, all who know how these long term side effects have seemed like an anchor at times to me and especially “Dr. Cutie” I want you to know it was worth it. I would do it all again, knowing what I know now, discovering my lived experience as only I can. It was definitely worth it.
Sign in or sign up to post a comment.
August 27, 2019 at 3:38AM PDT by Private UserLove you Martha!
Hugs
After a couple days of suffering, in that much pain & exhaustion, I get very, very badly depressed. The depression brings fatigue, the fatigue brings depression. MY NEW NORMAL = REST REST REST = BACK TO JOY!!
Love to you, and thank you as always for saying your truths!
Love and hugs!
Anyway, thank you for your uplifting posts and my thoughts and prayers are with you. Cherie
Love your posts! 😍
Fetching more entries....
