October has come – some thoughts from a breast cancer survivor

Holy Cow! It’s already October. The summer slipped away from me as I rested in bed trying to stay away from pain. And as I searched for answers to rid me of the pain. Now it is fall- one days oozed into another and what seemed like an eternity  of time as I sat in bed day after day has slipped away so very quickly. I look back and I still feel as if it should still be June.

I’m going into my fourth month of this hell with my pain issues. The pink will come out today. It’s breast cancer awareness month. It’s a good thing. But it’s hard for me to sort out my feelings really.

Today my son runs in a cross country meet. I haven’t been able to go to any of the meets this fall. Which is a bummer. Anyway for October -the runners are going to wear pink shoelaces. My son wasn’t sure if he wanted to go to all the trouble to change his laces. He’s a teen and has his lazy moments. I kind of wanted him to want to wear them bc his mom had breast cancer and bc i am still dealing w the after effects of treatments. And he lives it with me everyday. He’s used to a mom who  is sick in bed. That makes me sad. But his wearing the laces -that’s just a personal thing bc this son and I are so close. His wearing pink is significant to me bc he lives with the real truth -the real awareness.

He wrote an essay for his AP lit class last month . Part of it mentions how he was effected by my cancer. It made me cry.  I so wish I didn’t cause my family strife in this way. I rather cause strife by being a nagging mom not a sick one.

Three years ago on oct 3 I had surgery to remove the cancer from my right breast. It’s was a stage one cancer. Early stage. And I had a procedure done called a sentinel lymph node Biopsy where I had 4 lymph nodes removed – all returned negative for cancer. During surgery  I had little tiny surgical clips placed in my breast and in my armpit -also called the axilla. They are used to control bleeding and they help speed up the surgery.  Not all surgeons use them.  I followed my surgery with 30 rounds of radiation. Later I learned that radiation can be as damaging to the body as chemo and the effects of radiation can show up years later. I’ve since come to know cancer survivors who suffer from the effects of radiation treatments. I’d like to say in hindsight I would change something that I did back in 2013 but I really don’t know if I would. I didn’t have the gift of hindsight at that time. If I have been asked if I wanted surgical clips in my body I think I may have said no but I can’t for sure say that.

After surgery, I had pain and limited arm range of motion. Radiation intensified the issue. A few months after my treatments ended i was shoveling snow and something happened – when I awoke the next morning I had tingling sensations that went across my chest. It was very painful and it made me cough. Over the years I have had pain in the axilla and in my arm and those terrible sensations that would go across my chest. Nobody knew what was wrong. I saw many doctors with nobody really helping except to refer me to someone else. So I gave up. I was able to deal with the pain and I tried to live with it -figuring this was the price you paid for getting cured from cancer. Then this year in late late May I began to feel worse. The pain was getting much worse -and the horrible chest sensations occurring more often and they were much more severe.

By June it was getting so bad I was basically in pain for our entire vacation and when I came home we began to really push for answers. Which has been hell. I was in a very dark place for a good while.  Read more about that here. But our luck changed when we found our way  to some great and kind doctors who listened. A physiatrist I saw said it could be an issue with my surgical clips as they are located in my areas of focal pain.

That sent me back to my original breast surgeon who treated me like I was an alien and sent me to another breast surgeon that left me wishing I’d used him from the start of my cancer journey . He was finally Someone who looked at me – right at me- and saw a person in so much pain and I could see his shock in his eyes. I had come so drugged to his office for my appointment that day and  I still had to ask to be placed in an exam room while we waited for him to get out of surgery. I had to lay down. Sitting for long is too hard.  He walked in and saw me on the table with a heating pad in my armpit and he was shocked I was ever allowed to be in that much pain and he was even more shocked when I told him I was unable to get out of bed much and too use my right arm much brought on intense symptoms.

He sent me to his pain management center a few days later -where I had diagnostic injections – and all of those docs  -breast cancer and pain doc and a plastic surgeon I also saw – referred me to a peripheral nerve surgeon that also listened  and was so kind. He has seen a large number of breast cancer patients who suffer like I am. Post Breast Therapy  Pain Syndrome is only just now getting recognized as a thing in the medical communities. Often you get doctors not understanding your pain and you don’t know where to turn. Which sends you bouncing from one doctor to another.

But this doctor got it. I liked him right away. We talked a good while. He did a diagnostic injection in my armpit and I reported my results to him. He was happy enough with the results to agree to go in and resection my nerves. He agreed that surgical clips could be caught up in scar tissue and nerves and that this could be causing my pain issues. He didn’t know why I coughed from some of my chest sensations but didn’t cast me off as s crazy person.  He knows the issue occurred after the cancer surgery so he feels it’s all related to my axilla and breast pain. My surgeon is worried I may have internal tissue damage from radiation which can make the case more complicated. The things that we have to help eradicate the cancer can damage us further.

So on October 12 -a little over three years since my original cancer surgery I will be having nerve resection surgery. And he will remove as many surgical clips as he can.  I’m nervous but hopeful this will rid me of much of my pain so that I can again be a part of the world.

This brings me back to pink October and breast cancer awareness month. I’m all for creating awareness. But I think many of us are quite aware of breast cancer and cancer in general it’s everywhere.  All of us have been touched by cancer.  Do we need to be made more aware than me already are? I think awareness needs to expand its scope. I know this is a big fundraising month for breast cancer organizations. And that’s the point for the pink in your face for the month of October. And I think giving is great to help further cancer research to find less barbaric ways to treat this disease. Because it’s barbaric.

In Mexico there is a clinic where they treat breast cancer in a very different way. So much less invasive -breasts aren’t removed -the cancer is treated through the heating of the blood -and it also it involves diet changes ,supplements , the use of hormonal meds like tamoxifen. No chemo. No radiation.  They have good results in treating early stage cancers. Many of their patients achieve remission which is no evidence of cancer in their bodies and they didn’t have surgery or chemo or radiation. Pretty amazing. There are alternatives out there.

The month of awareness needs to extend to the entire truth. Cancer is a journey for the person having treatment.  It doesn’t end the last day of chemo or radiation.  We are all left with scars. Some physical some mental some financial. I had all of them. Cancer doesn’t effect just the patient. It effects the whole family. People think we just should get on with life. And most of us who are lucky enough to be in remission do. But we have scars. Fear always follows us. Sometimes chronic pain infiltrates us. Sometime it pops up years after treatment.

We freak out inside at any weird blood test result. I had one yesterday. Liver enzymes high. I think it’s because I had taken a pain killer and Valium right before the  visit to my primary care doc for a pre-op check. But they are higher than my blood draw a few weeks ago. In my head swirls so many thoughts.  Rational and irrational. I had a chest CT that said I had nodules on my lungs and three docs have told me they aren’t anything. But when you’ve had cancer you can’t let it go so easily. I’ll get a recheck  on these things after I deal with this pain issue.  It’s the trajectory having had cancer puts you on. You never really let your guard down.

Let the awareness continue. But let’s not make the end of the story just that we are survivors. That you rid us  of cancer – you’ve really put me in remission and I will try to do the right things to stay there.  Let’s tell the whole story.  Survivors can end up with chronic pain issues and other nasty side effects from the treatments. They can end up with recurrence and other types of cancers. Don’t ask us to be thankful we are still alive and we should deal with our new normal. I am thankful but theres just so much more to it than just telling someone to get over it and be thankful and get used to a new normal. My pain wasn’t addressed early on properly and now I’m in agony. And now hopefully I’ll be in less pain soon. But the mental wounds are hard to shake.

There too many people that suffer after cancer. Some things needs to be fixed to keep this from occurring. We need better after care for one. And its coming -I see it now after hunting down doctors familiar with post cancer pain – but the progression is slow.

I’m angry inside – but it comes from frustration over my situation and I want to make people aware of the true realities of cancer – not just the numbers Komen and other organizations throw out about survivor stats.

I’m that survivor and I am here to tell you the truth.  The good, the bad, and the ugly. Cancer is just the monster that begins the domino effect of a journey you never ever wanted to be on. I’ve seen my strength and weakness pop up in the same minute. I’ve Seen the very worst of myself and the very best. I’ve learned I’m resilient. I’ve seen the darkest depths of despair yet I’m here to tell you about them.

I’m the woman at the walk to raise money for a breast cancer center that’s helps treat woman who are low income or who are not insured. I’m the woman lying on the table face down getting pain block injections.  I’m the woman laughing out to dinner with friends. I’m the woman in tears bc her doctor doesn’t want to help her. I’m the woman stuck in bed trying to plan her daughters journey to get into college. I’m the woman who makes meals when others need help. I’m the woman taking in those meals now so her husband has one less thing to worry about.  I’m the woman who is facing surgery three years after my initial diagnosis. I’m not the only one. There are more of us. We are warriors.

I’m here to create real awareness that the cancer may be gone but the journey is never over.

I don’t mind the pink but just know there is more to the story -a lot more.

Cancer means so many things. It’s bowled over too many people. It’s a journey of warriors. When you see all the pink in October and your sick of it maybe if you’ve read my blog posts of late maybe you can look at the pink in a different way and you can know the story behind the story and think of those cancer warriors making their way through life trying to pick up the broken pieces and live their lives. And think of those fighters who have left us. This month should also be about them. The ones who are gone.  The cancer org’s won’t focus on that. I have a list of those brave souls that I knew that were taken by cancer- I bet you do too. When you see pink think of them.

And on October 12 if you have a minute to send a prayer up for me or send good vibes for my surgery and a good outcome that would be such a blessing to me.

______

See More on my pain journey here:

Sidelined -the summer goes on. 

Powerless- in search of MY power. 

Did I leave? 

Sitting on the deck

 

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