The Wee Hours

It’s 1:30 AM and I am up. I am awake, because ambien, neurotin, a muscle relaxant and prescription strength Motrin are no match for the steroids I am taking right now. My sciatic nerve is unhappy in a big way. It’s not like I haven’t been here before, creating a blog entry in the wee hours of the morning.

I’ve had a rough start to 2018 and to be quite honest I am feeling a little lost. As many of you know, or perhaps you don’t, my best friend passed away unexpectedly at the first of the year. She was so much more than just what words illustrate in the minds eye when someone says “best friend”. Perhaps that is why I feel so adrift despite not being alone. She would know what to do about this leg pain. She was with me at the very start of my cancer. Before my cancer. Before my husband even knew anything was “amiss”. She knew my story from the very beginning. I still felt alone then, in the early days. I feel alone now. My life is going on. Yet here I sit in a physical state of pain that is tugging my emotional pain free from me. The sadness I have, for the most part, is kept tightly bound inside. I miss her in waves and this one is a big one.

Sciatica and I and do not share a great history. I can easily remember other sleepless nights before it was officially discovered that I had anal cancer. The steroids, narcotics and tests performed to get to the root of the pain. The source. The ugly ass source. That crazy tumor crushing my nerve growing right out of my tailbone. I’ve had sciatic pain off and on since that time caused by the scar tissue left behind. It was managed with medicine for neuropathy at first and slowly, over time, treatments expanded. Physical Therapy, steroid injections, epidurals, and muscle relaxants have periodically been applied to the problem. Yet it remains, an unpleasant reminder of my cancer.

Many people don’t know I have had chronic pain for the past eight years. Sure I have given some sound bytes here on my blog but my pain just usually hums in the background. A sound only I can hear. I work, play, laugh and live with it daily. Some days are better than others. Most people can’t tell the difference. I mean why drag anybody down. Nobody really wants to hear it. My family must be sick and tired of hearing it. They must be because I am sick and tired of talking about it. Occasionally one of them sees it flash across my face and will ask me if I am okay. I just say “I hurt.” and then we move on. There is nothing they can do and nobody, including me, wants the downer of pain discussion. My doctors don’t particularly like to hear about it either. I see so many of them that if they can dismiss it as “not there area” or even more interesting, ask me what I would like them to do about it (how about fix it?) that I just get tired of even saying that I have it anymore. I want solutions that do not include narcotics. (a girl has to work) Let’s face it, on a scale of one to ten, ten being my worst pain ever (my thoracotomy) It hangs around a two most days. That’s probably about a 4-5 for most folks, but hey, it’s all perspective right? 

It’s times like this when the pain is out of control, so overwhelming, that I think something must be terribly wrong and I start to track back in time to things that may be related and be contributing to my manageable pain at “two” making it a “six” right now. So, fair warning, details may be a bit offensive (as in gross) from here on out. It all started with my neuropathy getting steadily worse this past summer. I saw my oncologist about it and we increased my neurotin dosage at night. I can only handle a low dose during the day because otherwise I feel foggy and that is no bueno for work. It did help at night. My feet were still making me bananas during the day so we decided to switch up the morning dose and besides it making my chin feel numb it was tolerable. Now, nobody changes a nerve pain drug dose or time with understanding that there will be a repercussion somewhere in your body. For me it was occasional incontinence. Not the pee when you sneeze, cough or laugh kind. It’s the OTHER kind. You know, the other “F” word. Fecal. There. I said it. Without going into to much detail...Wait. Who am I trying to kid? I am going to go into every detail. It’s who I am LOL. It started out slowly. Barely noticeable. I have been dealing with occasional accidents for eight years, almost all spontaneous and unexpected and always, well, runny for lack of a better term. (This is so gross) But this was different, it was solid and small and unexpected.At first I wasn’t that concerned. I mean this shit is just another day in the life of an anal cancer survivor. I deal with new little changes all the time. It became more frequent though and basically out of hand. I made an appointment with my colorectal doctor. I am breaking in a new one. She definitely saw me at my PTSD best at this visit. I had just lost my bestie, I have a dear friend trying to learn the ropes of my health support with me and I am basically a puddle of tears. She examines me and says, “ya got marked weakness on left”. She started me on fiber and sent me off to pelvic floor PT. I will spare you the details on those visits. (You’re welcome LOL) Improvement was minimal in six weeks and now sciatica had reared it’s ugly head again. It dawns on me that maybe the change in the neurotin is the culprit for the poop and the pain of it all. I return to the colorectal surgeon for follow up. She promptly agrees that it could be the change in the drugs but said “not my area” and please do six more weeks of PT because your muscle is weak and blah, blah, blah. I asked her if she could do her job if she pooped her pants. She said no, so there is that...consensus that this is a problem that needs to be solved. While we figure that out I have stopped eating on the days that I have work to do that does not allow me frequent bathroom escapes. It has helped. I have to wonder if that is an acceptable solution. I mean, yeah..sure..just don’t eat. That doesn’t sound good for you. 

Anyway, by that time my sciatica was screaming bloody murder at me. I made an appointment with my GP. He listened to my story. I think I might need an steroid injection but after doing some researching discover that I could have a pelvic insufficiency fracture caused by all the radiation I had. It could be responsible for the increased neuropathy, pants pooping, and sciatica. And  now I remember that back in November my CT scan showed some bone demineralization at the sacrum which we dismissed as long term radiation side effects. Come to find out the best way to see this kind of fracture is with an MRI. I had one of those yesterday. It took three hours. I haven’t gotten the results yet. 

So as I said earlier, it’s 1:30 AM and I am up. I am awake, because ambien, neurotin, a muscle relaxant and prescription strength Motrin are no match for the steroids I am taking right now. My sciatic nerve is unhappy in a big way. It’s not like I haven’t been here before, creating a blog entry in the wee hours of the morning...

Pen threw a punch at your cancer.
5 people sent you a prayer.
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Keep fighting. Your courage and tenacity will beat this. You will get through the wee hours of the night and in the light of day, you’ll get some answers and some comfort.
Michele, Kim like this comment
Michele, I am so sorry you are suffering with this pain that seems to be unidentifiable to this point. May that MRI provide the answer as to the cause. I hope it's something fixable. I have been dealing with pain on the top of my pelvic bone on the left for quite some time and am wondering if it is due to an insufficiency fracture too. So, to a certain degree, I feel your pain. I will keep you in my thoughts and prayers for answers as to the cause and the solution. Hang in there, my friend! Hugs!
4 people like this comment
Have you tried acupuncture yet? I have someone really really good in New York on Long Island... Okay realistically she is not the only good acupuncturist in the world there are others. It is often helpful with neuropathy as well as pain control.

Also, sometimes helpful with the emotional battles going on believe it or not. Just an idea if you haven't already considered it or tried it as part of your Arsenal for pain control.

One other question... Are you able to take Imodium? If the fecal incontinence continues finding a small dosage of Imodium might be helpful in balancing the leakage.

Have you read anything about hyperbaric oxygen for post radiation symptoms? If that were a viable
Kim, Carol like this comment
Wow! You have a great list of suggestions. Yes to the acupuncture. And yes to the Imodium. I have been on several bowel regimines. I am starting another one this weekend that involves Imodium again. No to the hyperbaric therapy. That facinates me! Can you tell me more? I know we have one in town. I worked in the burn center for years and we sent people there for wound healing.

M
Michele, you sound so strong, and you are a beautiful writer! So sorry the subject of your blog is not as beautiful as your ability to describe it. It is reassuring to me to know that I’m not the only one dealing with fecal incontinence. I am constantly aware of the nearest bathroom and always carry a supply of diaper wipes and spare underwear everywhere I go. Had a few accidents at work and at the gym, but I’ll be damned if I’ll feel embarrassed or let it slow me down. My new motto is “Shit happens!” Literally.

I wish your docs had better remedy for your pain. Hang in there! My thoughts are with you. Keep us posted. Hugs!
3 people like this comment
I haven't had a "code brown" yet, but it is my biggest fear...especially when I hear people who are several years out, having surprises. In any case, I love your motto (literal here, but applicable to so many issues!)
Michele likes this comment
I had an insufficient fracture in my sacrum caused by radiation two months ago. It was very painful. Finally getting better. Had to stop all activity and walk with a cane. Hope u get to the bottom of this.
Michele likes this comment
Sorry about your friend. Sorry your having to go through all this. I hope the MRI gives them some answers to help you. Hugs!!
Michele, Lenaecpht like this comment
Your writing is so real, relatable and touching...you are a gift to all of us. I’m saddened to hear you are dealing with the pain both emotionally and physically and I pray you find solutions and that the waves of grief slow down as well. Thinking of you 💛
Michele, Lenaecpht like this comment
Poor you. You have been through so much and you are still having to fight. Hope your MRI can give you some answers. Hugs Annabelle
Michele likes this comment
So sorry you are having to go through life without your bestie. I cannot even imagine how that must feel. And to top it all off with everything else that's going on physically with you, I understand why you were up writing a Blog in the wee hours of the morning. I always appreciate your writing. I am sorry that the subject had to be what it is today. I am hopeful for you that they find a cause for your symptoms. I am well aware that finding the cause does not always mean that the symptoms will be relieved. My prayers are with you. Sending those along with hugs and love.
Michele likes this comment
There has to be a happy medium somewhere. I like the acupuncture suggestion. I wish I had better advise for you. So sorry for the loss of your Bestie. I notice as I get older, I am loosing so many people around me. Life is a gift and could be short for some. I try to make the most of it. Hugs...Lisa
Michele likes this comment
If I could come over and hug you right this minute I would. I just hate that you lost your best friend. 😢I do not allow a lot of people into my inner sanctum but I cherish the two that are my best friends. I am able to be completely myself with them and they have both been with me for 35 and 45 years. Considering I am only 60 (only! Ha!) that means most of my life. It would be heartbreaking to lose either of them.
I feel "motherly" about a lot of the people here. It makes me crazy

To not be able to help or comfort. I know you are strong and will do well but I still wish I could do something for your pain.
My sciatica comes and goes. Every time it gets intense , I get nervous that this may be the time it stays. So far I think my yoga holds it at bay but if I overdue forward bends or rotation I actually exacerbate it. Such a tightrope to walk. They did an MRI and found that I have a bulging disc down about L3 right where my scoliosis is. The radiation did not do it any favors. I actually lost 1 section of my tailbone during the radiation treatment. The very end. Crazy.
I can only hope and pray your pain goes away. Big big hugs. Carol❤️
Michele, Cleo like this comment
Michele, I wish I could add something to all these wonderful comments. The irony is that all these consequences are the result of treatment intended to save our lives...the UK medical establishment is somewhat more honest in just calling it "Pelvic Radiation Disease." I do not have quite the poop issue that you do but I still don't make appointments in the morning and I take Imodium before we travel. Have you tried the "adult diaper" route for those days when you won't be near a toilet?

Adding to your physical stress, the loss of your best friend ... all that you can do is be grateful that you had her for so many years. You shared a kind of friendship that few of us get to experience. Keep her alive in your heart. (I was stunned to hear one of the youg Parkland students say that he stops by the memorial for one of his friends killed there, because as long as she is remembered she won't die...such wisdom in one so young.)

HUGS.

Michele, Cleo like this comment
Michele, sounds like you have all the right people (including us BFAC-ers) weighing in on it all. Hopefully the MRI will lead to some solutions. I assume that surgically removing some scar tissue near the nerve is not an option? Your post reminds us all that, in even the best medical centers, we need to be our own best advocates and demand answers, and I dare say you’ve always done that! Please keep us posted on the MRI results. However the outcome, we all learn so much from your blogs. Sending most positive thoughts for a solution...Lucky
You are right about removing the scar tissue not being an option. It actually makes it worse if you can believe it 😕
I could relate to the loss of your BFF; I miss Ellen every day and sometimes feel like I've no one to guide me and keep me grounded, though I know I'm capable of it on my own. Fortunately I have my cousin Janet to keep me guided. Sciatica......my left hip/buttock, down my leg, when I sit too long. I use Biofreeze. I'm sorry you are having all those tx residual issues. Sux. And after all you go through with anus ca, you shouldn't have to put up with accidents and such. I'd be curious if they're working on a trial Rx for that?
Michele likes this comment
Sending prayers your way!! Sorry to hear about your bestie! I know I'd be lost without mine.. She helped me and my husband tremendously while my son was in the hospital.. He wanted someone with him at all times. He trusted her and he didn't like anyone talking and she would sat quietly until he'd talk to her.. He held a special place in her heart.. sometimes she gets emotional talking about him... Enough about that... I'm crying now!! Prayers the MRI gives you the answers you need..and prayers for your complete healing.. XOXO, Lenae
Michele likes this comment
So sorry about this, Michele - I hope you get some relief soon! It is hard to live with the after effects of our cancer, and yet assure people we are happy to be alive. But we do want more.... Thank you for your posting - you write so beautifully!
Michele likes this comment
Thank you Julie!
Thank you for sharing. You have a gift with your writing I hope you know how your help others😘😘
Michele likes this comment
Doggone-it Michelle, life has handed you a real sh*t-sandwich (not a good pun), and sorry to hear you have to go about this without your best friend- but that's a 'happy place' that you can still visit only in your memories. Regarding your new "issue", some movie called it "shart" or "starting"- bonus emissions in addition to the fart!
Is your hubby empathetic to your situation? I'm calling him out to be your new BFF.
What makes human pain different than animal pain is we can ask "why" (and not know), and that is then called "suffering". May you be blessed with accurate medical data and a medical team to come-up with some pain management, as well as a long-term fix. BTW, cancer, and after treatment side effects, still suck, big time. May better days, and nights lie ahead.
MGBY,
John
Michele likes this comment
Hi Michelle,
This all sounds so complicated. But one thing caught my eye. De-mineralization of the bone. I don't know the answer, but I wonder if there is a way to re-mineralize the bone? I've been through some bowel issues and accidents myself and started back to PT in December. It has not helped me that much either. I wish I knew something to help you feel better. I know Tyndall is using the Bemer Mat. My eye doctor is offering them for rent/sale. He says the four of his patients with cataracts have been cured. They dissolved without surgery. It greatly reduces pain. I had a treatment with him the day after I sprained my ankle and it did help with pain and reduced recovery time. There are Youtube videos that explain how it works. Do a search and check it out! Hugs and prayers
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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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