This Doesn't Sound Fun, Does It

An answer came yesterday afternoon from a radiologist unknown to me. Someone who reads for one of the area imaging centers. The answer came in 24 hours which is pretty quickly around these parts. I started my morning in pain, a little grumpy from the lack of sleep combined with the wear that a constant intense ache can bring. I showered and dressed for work. As soon as the clock told me it was eight I called my doctor’s office and left a message for the nurse inquiring bout my test results. I keep my voice kind but I know the nurse can hear my weariness beneath the pleasantries. I leave my cell number, twice in the voice mail. I hang up and start about my day. I hear from a few close friends texting some various forms of strategy for extracting my test results from the offices that hold them captive. I’ve been doing this long enough that I know that no matter what I do, the answers are released when they are ready to do so and I generally start with honey and advance to vinegar as time wears on. 

It is early afternoon and I am headed to a clinic North of town. My right hip wails at me as driving aggravates my sciatica and the pain seems to just wrap around my thigh and into my groin when I press on the accelerator. I am anxious to get on the highway and engage the cruise control when my cell rings. My doctors office number displays on the control panel in my car. I pick up with a touch of a button coaxing my warmest tone to the surface...honey. I want answers, I need answers. I find myself secretly relieved to hear the nurse’s voice on the other end. The news must not be so bad I think or the doctor would be delivering it personally. Here it comes. Her tone is serious. She said there are no fractures in my sacrum and the area where my tumor had been remains stable compared to my last MRI (last year). I find my shoulders start to relax. “Well then why does it hurt so bad?” I wonder aloud more than ask. She then goes on to say that the pelvic portion of MRI shows osteonecrosis on both sides. (Necrosis?! Necrosis means dead. Yucky. Not viable. My hip bones are rotting?!) Both femur heads are involved but the right side is much more effected than the left. She reports that it is probably most likely caused by my radiation and chemo but I need to see an orthopedic surgeon as soon as possible. We discuss a few names. My mind is racing and again I miss my bestie sorely. She would know which doctor would be right for the job at hand. What is the job at hand I wonder? I ask the nurse what the treatment might be and she admits readily that she doesn’t know. Ortho isn’t her gig. It’s not mine either. This will be new territory for me. 

Before we hang up she said that doctor wanted me to consider something stronger for pain. It’s not going to get better on it’s own. I need to be able to sleep. I acquiesce. I have been so resistant to anything stronger than motrin unless it’s strongly indicated. I don’t resist when she asks this time. The pain has worn me thin and the diagnosis confirms that relief will not come in another way at least for now. We agree on my old friend Percocet and she arranges to have the written script available for me to pick up at the office. In the meantime she will get e scheduled with one of the two surgeons we discussed...first available. We hang up. I call my good friend Erica (my new medical ‘go to’) and we talk through everything and decide we are happy that it is not cancer. I then call my forever friend Marie. We also agree that we are thrilled it is not cancer. None of us know anything about orthopedics but we will just have to “Dr. Google” it later. I call my husband and we just talk briefly but the “happy it’s not cancer” theme continues. I text my kids and it’s one of them that responds with this question. “What’s that?” I explain it as best I can and we decide we are happy it’s not cancer, but that doesn’t mean that this is not a serious side effect. It’s hard to not know what will happen and what treatment might be. Again my mind goes back to the first thought I had when I heard the word osteonecrosis. Necrosis?! Necrosis means dead. Yucky. Not viable. My hip bones are rotting?! This doesn’t sound fun, does it.

3 people threw a punch at your cancer.
6 people sent you a prayer.
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Omg- does it never end? I am so sorry you are having to deal with this new set of issues. I do enjoy reading your posts because of how well written they are. I wish they were not about this topic. You are in my thoughts and prayers.
Kim, Michele like this comment
Positive thought it's not cancer. Relieve the pain and go on to your next Dr. You'll be okay. Doesn't sound like fun but many things aren't Fun. You have been through worse so you will manage this little problem then take it from there. Good luck Michele.. NO Cancer :)
John, Michele like this comment
WOW!!! Pelvic Radiation Disease on stilts! Am glad you are getting some answers, hoping that you find a really good orthopedic doctor and get some healing underway. HUGS
Michele likes this comment
No it certainly does not sound like fun, but it's probably do-able. I am sorry you have so much pain. Are you able t get some compensation for more sick time. I don't know how many are able to put a roof over their head with all these debilitating procedures. Please keep us posted, will keep you in my prayers and sending positive energy to you.
Michele likes this comment
Oh geez Michelle...no it doesn't sound fun. I have hip and back pain...but doesn't sound as severe at what you are experiencing.. necrosis... geez...what in the world??
Michele likes this comment
No it doesn't sound like fun!! Prayers for healing!!
Michele likes this comment
Fun, "I don't think so Tim" ("Home Improvement" TV show reference. I recently fell on the ice with the full weight in that region and had X-rays since it was very painful but (butt) I only had arthritis from the fall so I hate to imagine your pain from having what you have. Good news is, people I know that've had hip surgery end up with much less knee problems down the road. Cancer treatment, the gift that keeps on giving? MGB why, John
John, your comments always manage to cheer me up. Thanks for the encouraging words.
ML
John likes this comment
Ouch! When my cancer spread from lumber sacrum to iliac , I asked my oncologist if I could possibly have more radiotherapy? He told me that as I had had 28 doses during my initial chemo/radio therapy , that further radiation, would run a high risk of osteonecrosis, which could be horribly painful 😱 I’m so sorry to hear this is happening to you, I also have painful hips, my surgeon said it’s down to arthritis caused by chemo?? Keep on, keeping on! Surely they will come up with something soon? That’s what I keep hoping for. Hugs xxx
Michele likes this comment
Hip replacement(s)?
Michele likes this comment
Not sure yet. The experts need to weigh in...
Honestly, we need treatments that don’t later require treatments themselves! What the hell. I hate hearing you are suffering. I pray you get 2 opinions or more on the best path forward. And some relief for the pain. Loving hug around you❤️💞
Michele likes this comment
I truly believe that my left hip pain is most likely due to radiation damage, so I'm not finding your situation hard to believe, my friend. The old adage "what doesn't kill us makes us stronger" probably does not apply to radiation treatment. I know you'll keep us posted on what the ortho doc says. Who will be next?--could be me. I will be curious to know if there is a treatment for this. You are always in my thoughts and prayers.
Michele, Cleo like this comment
Any news yet? On my side, I’m going for my scan in 2 weeks. I have to find the diagnosis of the ongoing pelvic pain...
Yes. I need to blog desperately. I will be having a total hip replacement. Details to follow in a blog post soon..
Michele, I am so sorry to hear this. :(
It will be better than the Pain my friend...thank you for caring about me :)
Smurf, Itsme like this comment
Yes, I'm sure about that, Michele. Hey, I may be seeing our mutual friend, Bob T., a week from Saturday. Do you mind if I mention your upcoming surgery to him? I won't if you don't want me to.
Michele likes this comment
Mention it! He probably knows from Facebook anyway...
Smurf likes this comment
Okay, I will if I see him. Thanks!
Well, from my research and from a friend I met at Livestrong there are a couple of treatments. If they catch it early they can cut away the dead tissue and do a drill hole and a grafting OR they can replace your hip. She tried the graft and it failed 3 weeks later and so she had her hip replaced. I will keep you posted on what the orthopedic says.
Smurf likes this comment
Thanks for the information, Michele. I am sending prayers and big hugs your way!
Michele likes this comment
This sounds like the opposite of fun - this sounds like hell. I’m so sorry you’re going through this - take the Percocet and at least get some sleep. Have to take pleasure in the little things here, and hopefully the orthopedic surgeon can relieve the big thing. Praying it all gets better for you!
Michele likes this comment
No, not fun at all. You are surely one brilliant woman since your body is taking to new heights the concept of “suffering brings wisdom”. I am so hoping that after your treatment and after your recovery, that you have the gift of being finally released from this pain. You are in for another ride with this disease...I pray it’s the short route. But, it’s not cancer!!!! That is so great to hear. Best wishes for you and your new go-to bestie for med advice (and your loving, always there spirit guide) find that perfect ortho doctor.

I jjust read that Osteonecrosis can also be exacerbated by steroid use so watch for that potential linkage, too.
Michele likes this comment
So glad it’s not cancer!! I hope you get a plan of action going soon so you can get back your life!!! Praying for you.
Michele likes this comment
Does not sound fun at all. Keeping you in my prayers.
Michele likes this comment
Hello my friend. I am so happy to hear no cancer and yes this is no fun and I hope it gets resolved with the least amount of pain as possible.. I have been listening to Doug Stanton Ministries on Facebook every night they are having a revival and it is helping me so much. It starts at 8 pm my time or a little after. They have miracles there and online every night . I prayed for my mother's 5 cm mass and within 3 days it was clear from a CT .I went to Doug Stanton, 7 years ago and I went from having to get my voice box out to 90% survival and chemo and rads.. Miracle and a huge difference in my life... If there was a great place to eat I would tell you .. well this is a great place for food for your soul and healing.. I pray you are healed in Jesus name Amen hugs and love and always prayers Sabina
Michele likes this comment
I am happy for you... it's not cancer. Take the pain meds and see the doctor.
Michele likes this comment
Thank you so much for your last post. Your graphic description answered so many of my questions. Like you, I had stage 4 Squamous Cell Carcinoma cancer (HPV 16) of the rectum (most likely the primal tumor was attached to the sacrum) with lesions to the liver. I’m what you called in on one of your posts a “God forbid”. I say that because you were expressing gratitude that your lung was affected but not the liver (then you wrote “God forbid”). I have this huge chance that I live beside one of the 13 North America liver surgical center. The surgeons did a wonderful job, two resections that I hope will stop the cancer in its track. My oncologist also did a little miracle. Instead of going for traditional treatment, he proposed an esophagus HPV protocol because of his observations of the biopsy. He went with the cell histology, DNA and so on. Science is going forward, thank God. After 22 weeks of chemo and a first liver resection, I got the whole deal radio-chemo. With burns and all. Then I went with a radioscopy of the liver that didn’t work and finally in November the last resection. My oncologist counts the NED since the last chemo treatment in July 2016. We’re crossing our fingers for the 3 years count. I have been having pelvic pain on and off. I went to the pain clinic for the legs neuropathy. I never would have thought that pelvic pain would have been next… So when I read your blog, now I start to understand what I was going through. As John one of you readers said: “Cancer treatment, the gift that keeps on giving.” Do I ever agree! When you wrote one of your post you wrote: “I am going to go into every detail.” Truth is, I need the details, all of it. Because it helps me understand what is going on in my own body, what is and is not. Thank you again and again for your wonderful posts. And know that you are my fellow sister and that I accompany with every challenge that is going on in your body. Take good care.
Michele likes this comment
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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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