Michele's Cancer Blog

Memorial
January 31, 1963 - June 10, 2020

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by Ann
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you will be missed Michele
by Liane
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Rest In Peace Michele, you earned it.
by Unsure
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You gave us so much, we will miss you
by Dianne58
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What a fighter, what a writer. Peace to you M
by Mayday
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RIP
by Terri
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Thank you for your beautiful writing. RIP.
by Heidi
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Fly high in pain free joy 💕
by Kbmcv
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Rest well, my "Chihuahua Sister".
by Marcia
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Soar with the Angels
by Laura
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What a warrior, rest in peace.
by Thom
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May your memory be a blessing .
by Gwenn
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Thank you Michele! Rest now...
by Easterly
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I'm so sorry. I'll be thinking of you.
by Lisa
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You are an angel! We will miss you!
by Bonnie
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Rest In Peace 🙏🏼
by Pen
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Rest In Peace 🙏🏼
by Pen
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Soar with the Angels
by Laura
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My heroine and inspiration. RIP
by Tyndall
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Everlasting
by Linda
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Heaven has another writer! Peace, girl.
by Carol
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Soar with the Angels
by Laura
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You are our light, dearest Michelle. Rest in peace
by Daisy
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You will be so missed, Michele - Rest In Peace.
by Julie
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RIP Michelle. Your spirit and advocacy will be mi
by Cherie
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by Amy
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I will miss you. Thanks for your love.
by Michele
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Your light shined so brightly.
by Danean
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You will be so missed, Michele - Rest In Peace.
by Julie
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Rest in Peace my Friend
by Smurf
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Rest in peace
by Jane
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R.I.H. Amen
by John
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RIP
by Laurie
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You were a shining star for us all.
by Helen Marshall
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You were such an inspiration. Rest in peace
by Susan
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Rest in peace, Michele. You will be missed.
by Mari
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Rest in Peace. Will miss Michele and her posts
by Kevin
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Gutted by your loss, rest peacefully
by Debi
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You were such an inspiration. Rest in peace
by Susan
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Rest in Peace
by Lori
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So devastated. Will miss you so much
by Annabelle
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by Olga
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Soar high, Michele
by Thomas
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Rest in peace
by Admin

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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
Hope to get to read your novel someday. Happy birthday week!🎈🎉
Michele 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, Lori like 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!
4 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, Lori like 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.😇
3 people 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!
Yes definitely worth it! Watching your family grow and enjoying the good times xxx
Love your posts! 😍
Michele likes this comment
This really speaks to me. Thank you for putting it into words and sharing with us all. Love to you. Mary x
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From Somewhere Up Above

I have been missing my bestie, Laurie, as of late. I always miss her. This however is extra and beyond my usual ache when I think of her. My health has been a little bit sketchy these days. It’s like my long term side effects have all ganged up on me at the same time. They are hard enough to deal with on their own, but when they intersect...well, it’s nothing short of a hopeless feeling. It’s kind of like being face down on the ground with someone who is a lot bigger than you with their knee in the center of your back and they are shoving your face into the ground with one hand and restraining your hands with the other. It feels like you are suffocating. Like you can’t cry out, and worse yet, people are witnessing this and are willing to help, but you have to ask the right person and you have no idea anymore who that is. So, there I was just panicking and not saying what I need because I need so much. For the last few weeks I have been seeing doctors and having tests and checking off who my helper might be and thinking the whole time “Laurie would know what to do. She would know exactly who could help me.” I found myself engulfed in a feeling of abandonment. Like she just left me here and walked on. Then, she didn’t just tap me on the shoulder, she wrapped her love around me. Let me explain.

Laurie was a master of her craft as a Nurse Practitioner, a fierce and loyal friend to many, and she was always helping somebody. As I have traipsed through the last month of my life she really has been beside me, but I was too overwhelmed to see her there. When I started with the orthopedic doctor, he said he wasn’t the one to help. I needed to see my much sought after, amazing neurosurgeon again, his PA said “Let me put a call in for you”. I then went to see my oncologist and he wasn’t sure if he was the one to help me, but he listened and tests were ordered. His nurse helped by putting in a referral to my neurosurgeon as well while we waited for tests and faxed my results to his office even before I knew what they were. Still I was missing Laurie’s presence. I was unsure which direction I should go. All I could think was “Laurie would know what to do? What should I do?!”

My husband went with me to get my MRI results and we were thrilled that cancer was not wreaking all this havoc on my body, it was scar tissue and bulging discs. The neurosurgeon was going to be the person that could help get this knee out of the middle of back to help stop the suffocation. I felt overwhelmed for just minute and told my husband on the drive home that I wished Laurie was here because she would know just what to do. That’s when I felt her beside me like a whisper saying “You know what to do.I left you in the best of hands.” 

When we got home, I poured a glass of wine and opened my Facebook messenger. I reached out to one of Laurie’s other besties. One of her most respected colleagues, the one she had entrusted my care to 9 years ago when my tumor was first discovered, my neurosurgeon’s Nurse Practitioner. It felt kind of forward of me to just send her a message about health, but this was important. This was my health and I felt Laurie telling me to not be afraid, to be bold, like she would be if she were walking still among us. I typed a short message, took a long sip of wine and pressed the send button not knowing what would happen. Within a minute I had a response filled with care and concern and a few questions. I typed back my answers and so it went. In five minutes there was a plan made and she messaged back to me that she would take care of things. Worry drained away and I felt like help was on the way. My bestie’s whispers were right. I did know what to do. She did leave me in the best of hands. She left me all the love from her I could ever need. I just had to open my heart to it and feel her care coming from somewhere up above.

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💞
Michele likes this comment
A really inspiring story Michele, thank you for sharing. Sometimes the answers to our innermost questions come from within us, as Laurie lives on in you. Sending love your way.
I love this, Michele. People do guide us through life, even though their physical presence is gone. Sending big hugs and lots of love to you!
Michele, Carol like this comment
Michele,
I am sorry that your body has ganged up on you. I am sorry for the loss of your friend, too. When did that happen? I get notifications, pray for people, but, alas, I don't always log in.
That said, God -- and his angels, work in mysterious ways. If we obey that nagging little voice (not always easy), usually, great things will happen. Hope you feel better soon and thank Laurie for her "presence." 😇
Hugs!
Carol P.
Michele, Sabina like this comment
What a wonderful story of love and resilience. Nurse Practitioners are special. Don't know where I'd be without mine she's been with me for 8 years, through thick and thin. We are a team. I'm so glad you are getting the help you need via your guardian angel!
Michele likes this comment
She is looking over you all the time!! You are a true inspiration to me. Right now have recurance of anal cancer in my lungs. Who gets butt cancer in their lungs? Just kidding!! I am dealing with so many issues from side effects it’s ridiculous!! But continue to fight the fight!!!
3 people like this comment
Me...I get butt cancer in my lungs. You and me, me and you, us. Not the greatest club, but that’s ok. Here we are, living our best lives :)
Lily, Sandy like this comment
Hey just checking in to see how you are doing? Hope all is well!!
Thanks for checking on me. In the throws of my disability claim from my long term side effects. But all is quiet on the cancer front. I rescan in 3 weeks.
Well keep us posted!! My scan is about that same time. I’ve been on Opdivo since July. You are such an inspiration to everyone, just wanted you to know you are awesome!!!
Michele likes this comment
God will provide all our needs and all good comes from him. he is with you when you need him most and puts people in our lives to ease the trip. You know how much he loves you.. you are the perfect example of love... he is revealed in you... let your love pour out in all you do and know you are loved and replenished. I love you and saying a prayer of healing xo hugs and love and always prayers Sabina
Michele likes this comment
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January 31, 1963 - June 10, 2020

Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

June 10

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

Stats

Posts: 145
Photos: 4
Events: 0
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Friends: 366
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