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.

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Reading this has left me almost speechless. But I will say "Yes, it was all worth it" in your case and mine. How else would we have known each other? Love you, Michele!
4 people like this comment
Best. Comment. Ever.
Love you Martha!
Smurf, Lucky like this comment
Boy did you ever nail this one Michele! Love you too!
3 people like this comment
Much love back!
Lucky likes this comment
Indeed there are no words to say. Except, you are definitely worth it! Love to you!
3 people like this comment
All this love!! I am overwhelmed 🙂
Lucky likes this comment
Keep floating on all that love, it will take you through those side effects! More hugs!
Lucky, Michele like this comment
I always have excited anticipation when I see you have posted. Your way with words and ability to describe what I feel are uncanny. I too have fecal incontinence,know where all the restrooms are, have thrown out underwear, have used a public toilet as a washing machine, carry my own "diaper bag"... Just yesterday, I was feeling sad about these side effects we experience and conversing with my daughter about them.I always end such sessions with "But I'm alive!" You continue to amaze me. I am so grateful for all of the women I have made friends with on this blog. So thank you Jill for bringing it to life. And thank you to all of you who keep on keeping on.
6 people like this comment
Thanks for listening to my story and I am always glad to know my writing is enjoyed! I started writing a fiction novel completely off the beating path from my first books. This one is a love story...
Lori likes this comment
Yes, it WAS worth it...perhaps my new mantra 😉! Much love to you!
Lucky, Michele like this comment
Much love back sister!
Kim likes this comment
Michele, that should be all of our new cheer: It was worth it! Those sometimes unexpected side effects over the years do keep coming, and you’ve had way more than your share. If it makes you feel any better, I have frequent fecal incontinence as well. I think most of us do at some point or other as we journey into (hopefully!) old age. Thank goodness for Depends...Love to you Michele. You just keep right on blogging about it to all of our delight!
3 people like this comment
You guys are my peeps...always there for me!
Lucky likes this comment
I love this passage. You are so inspirational. Was having a bad day with too many side effects from progressing cancer and then I read your post and was so uplifted. Thank you.
Michele, Lucky like this comment
You’re so very welcome!
Words that match my own, although I did not have a Dr. Cutie on my first run with cancer. He was more like a used car salesman, great in getting the buy in but when problems came on he was gone. I do know the feeling of joining the “aging” groups. The mind is willing, but the body is not. Hugs for those moments of life that you have to reflect back and say that the treatments offered another day. If you ever want to share “war” stories about fecal in continence, I have some real good ones.
4 people like this comment
I think many of us have some good stories about pooping at the wrong time lol! 🙊🙈
Laura, Lucky like this comment
Michelle, We SO identify with your suffering, and your zest in life! Thank you for putting to words, things we'd love to say, in such meaningful ways!
Hugs
3 people like this comment
How are you doing my friend?
Better today, thanks for asking. Patching myself back together, after 7 months of putting sisters life back together and helping my daughter find a new life for the last year. Now that this siege is ceasing, I thought; did helping them, finish me off? I was devastatingly exhausted and in pain. Days of trying to push myself into my next ventures, I realized, I either need to go to emergency, or just flat out rest til I felt better. Well, that worked! Just like you said; “increasing my sleep to 10 hours from 8 helped the most”.
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!
3 people like this comment
Jean—You too are due some good times! Please do try to think about yourself more, and yes, sleep is paramount. Love you...you’re a force to be reckoned with my friend. Take care.
Easterly likes this comment
and I owe you a lot, due to your excellent recommendations over the years!
Love and hugs!
Lucky likes this comment
Your writing and comments really moved me. You truly understand perseverance in the face of adversity! You sound like a wonderful resilient lady and I wish you all the love and support you need as your journey continues. Big hug! Donna
Michele, Lucky like this comment
Thank you so much for your kindness!
Lucky likes this comment
Very well put!!
Michele, Lucky like this comment
Yes, I would do it all again too, but hopefully without all these side effects! I hope Dr. Eng and others are learning a lot and will have better, easier treatment soon for those newly diagnosed. I’m so glad you spoke about all the ailments and coping mechanisms - this is definitely the forum. I don’t like to dwell on it or burden my friends and family, but darn it, some days are hard! I just returned from a long weekend trip and I’m exhausted. Went on a beautiful hike, but my hips are aching today. Didn’t leave any underwear behind this time, but brought a bag of damp ones home that I rinsed in the hotel sink. The list goes on, but I came home today to sweet baby James (he lives nearby) and he is so delicious and I’m so happy to be alive for this time of my life!
3 people like this comment
So well written and well expressed Michelle. U are so gifted. I feel your pains and Joy's through your writing. Will be one of the first to get your love novel when you publish. You are a warrior and thanks for sharing
Michele, Lucky like this comment
Yes! Yes! Yes! It was all worth it!
Lucky, Michele like this comment
All day. Every day.
Lucky likes this comment
Love you Michelle 💕 I’m glad you’re alive too dear one.
Michele likes this comment
Love you too 💕
Michele, I love reading your posts. They are always so well written and convey what most of us are feeling or going through. And yes, it was all worth it! I, too, struggle with fecal incontinence and know every bathroom in my neighborhood. I have almost given up traveling. I would love to do a European river cruise, but cannot imagine doing the long plane ride or trying to find bathrooms in all the little villages along the Rhine, etc. Lol
Anyway, thank you for your uplifting posts and my thoughts and prayers are with you. Cherie
Michele likes this comment
I'm amazed and so, so proud to know you with the final sentence of your post. Despite everything, it IS better than what the alternative would've been had we chosen the "latte enema-eye of newt-peach pits" route! Oh, the good things we will see that are yet to come. God bless, and take your pain away, make your life easier.😘
Michele likes this comment
Thanks Marcia! How are your pooch pals? Mine are aging these days, but always of good company. They keep me sane!
Marcia likes this comment
Stella passed on January 20th, well we had to take her to be euthanized 😥. But she was near 17😇. She had no illnesses other than advanced age illnesses, blindness, dementia, crooked spine but no pain. Then.....she stopped eating/drinking. Blanche mourned for a day, then went about her life. Man, losing a pet never gets any easier. I'm glad yours are doing well and they bring you peace & calm, give them a hug from me. We still didn't get Blanche a "sister"; she's near 13. Thank for asking me, I like talking about Stella.😇
Michele, Sabina like this comment
Thank God we have you in our lives. (There are too many reasons to list though I don’t feel the need to list them because all of us know exactly why.) Thank you so much for sharing your journey and may each day get a little easier in any way possible.
Michele likes this comment
All this support from you and everyone else eases my soul thank you!
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

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