I had a plan**

I had a plan. **

You know, best laid and all that.

Life got in the way and all that.

I want to say something but I do not want it to sound whiny or pouty or feeling sorry for myself and all that.

I think it may be unresolved anger. Or maybe it is very well resolved anger. How do you know if it is unresolved? Maybe by the number of **** used in words like da*n or is it d*mn. Nuts I can’t even curse properly in print.

In six days I have an appointment to see my oncologist. The plan was to tell him that even though I still have two years of drug therapy left I simply must stop taking the pills.

I am certainly much better off than many people I know but I am angry at ‘the attitude’. So you had cancer, radiation and medication and the follow up tests say it is all gone. Mine would be a success story. Except.

The complications and side effects at this moment are just too much.

Most are just annoying, but I have discovered that annoyances that are constant are debilitating and depressing.

I have a number of friends that went through, and are continuing to go through the same diagnosis, treatment and consequences, all within a short time of myself. For some the stage of cancer was worse and some not as bad, but basically we survived the surgery, radiation, chemotherapy and had positive results. So it looks like we survived.

But no one said the cure was worse than the disease. Well I guess it really isn’t but it sure feels that way. Would I have agreed to treatment if I had known what it meant?

October 7, 2013 surgery for breast cancer.

December 2013 to January 2014 radiation. Fair skinned – and I burned like a toasted marshmallow in spite of ointments and creams, and the radiation broke down one of the incision sites. That was fun.

Then a start on Arimidex, a drug to prevent the production of estrogen (since my tumors were estrogen producing) – to be taken for 5 years.

Now my doctor would say, ‘I explained all the possible side effects to you before I ordered the drug.’

Yes, yes you did.

But when you are sitting there in a state of shock over your diagnosis everything else that is said is just back noise. Your mind just can’t grasp it. And really, until you actually experience it you can’t possibly know, or guess, or imagine. It is all just a bunch of words.

I was pretty good until April 2016. Hot flashes that had been gone post-menopausal for ten years came back with a vengeance. But I am woman. Hah! This is no more than a very uncomfortable annoyance. Not to mention embarrassing when speaking with someone in public and the hair at the back of my head drips water down my back.

I had three friends that went through all this a few years back and had NO side effects so I did not expect any either.

I am really angry about my cholesterol which has always been remarkably good. BUT stop estrogen production and that bad cholesterol goes sky high. ‘I will change my diet and exercise rather than take drugs.’

‘Chris it won’t change anything. Right now you have a one in three chance of having a stroke.’ So now I have a lifetime commitment to a Statin.

One friend who went through surgery and treatment four months before me started experiencing a lot of joint pain, and she would ask if I had any. Me? Not I.

But four months makes a difference. By April 2016 when the doc asked if I had any joint pain I said, No. at least no more than usual except my right wrist was painful, but I put that down to excessive Knitting or typing.

By August 2016 hand and joint pain was what I would call excessive with limited use of my hands. Pain in my hands and arms would wake me at night. I would wake up crying.

I got splints and called my oncologist who said to immediately stop the Arimidex and start taking Tamoxifen. But before he ordered it he said he wanted me to fully understand possible side effects and decide if I would continue. All I wanted was for the pain to stop. So I agreed.

Truthfully the pain remains in my hands but is less that before. I can knit and type without crying.

Then the other joints decided to join the party. But at least they are polite and let one flare-up finish before another starts. Most recently my right knee flared which lasted days, and I literally moaned and groaned with every step. Finally last Monday was a Normal Pain Day! Yea! But in the early morning hours on Tuesday I was awakened with fierce left hip pain. Now today, two days later it is just normal pain.

Some days I limp along, and some I can just go about my business, and some I have to go to bed for a couple of hours in the afternoon until the worst of whatever flare up passes. And it does pass. But I am angry. This ‘successful’ treatment is interfering with my quality of life. At my age anytime spent in bed or immobile due to pain is a major interference. I don’t want to spend a single second not ‘living.

I can handle pain. I can’t remember what it was like to have no pain. But these flare ups are above and beyond. I won’t take heavy drugs because that just fogs and messes up your mind. I know, I know, you say, the ‘quitcherbitchin’

It all comes down to quality of life.

Oh and more news. A friend who went through the same thing at about the same time has just been told she has lung cancer related to her radiation therapy. Oh I remember being told at the time, ‘Now radiation kills good cells as well as bad so there is a chance you could develop lung cancer.’

You hear the words, but they are only words.

So here it is a few days from my appointment. I decide to check with the Cancer Society and Support Groups. I want to know how reasonable my request to come off Tamoxifen 2 years early is. (One dear friend has been told she must be on it for TEN years, not five, and she is experiencing everything I am.

Anyway, apparently coming off the pill increases my chances of the cancer returning. The dreaded hot flashes in fact may not go away but may actually get worse. The joint pain in some cases gets worse with withdrawal. Oh and some report abdominal bloating. Sigh…..

D*mned if you do, D*mned if you don’t.

If I knew then what I know now would I…..?

I will say if you now anyone who makes a decision not to receive treatment, please just give support and love. There are consequences to every decision.

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18 thoughts on “I had a plan**”

  1. I did radiation 43 days then chemo by getting a shot every 6 months 2014. All gone, free and clean no treatment just monitor every six months. One time right after radiation I went to the grocery store and set of the alarm system when I touched the stainless steel checkout counter. It does not seem like it could happen but when I touched it again the alarm when off again . The doctors say there is no connection but I was there and that’s what happened ! My side effects were minimal. Survived open heart in 2006 too. These things are frightening but if we are still here it is obvious that we have more time to see and do things and not just for ourselves and I get mad and stubborn and don’t let it all immobilize me. I think we should allow ourselves some “I can’t do anything ” days now and then, however.
    The depression is normal.Some days I do not want to leave the house but then I force myself to do little things even like merely cleaning up the refrigerator and vacuuming the carpet gets me up and moving again. I used to complain just a tiny bit but have learned to stop that completely. I am dad’s sole caretaker. He is 93. He has to think I am 100% just fine to give him some serenity and security. My children and grandchildren have not integrated it all. They think I will be here forever. All I can do is stick around as long as I can. I don’t share my emotions as they don’t know how to react but sharing them cancer patient to cancer patient is what is most satisfying and elevating. Divorced since 1984 and only child so I must be my own support system. I have decided I am going to be uncompromisingly stubborn about it all. Regards…

  2. Your plan sounds better than what’s going on. I can’t imagine having to make these decisions Chris. I don’t even know what to ‘say’. I know my words are only echoes and can’t change one thing for you. “I’m sorry” seems such a weak thing to say. And yet I struggle to say anything that means more or feels stronger. I am sorry. And truthfully, angry, for you and what you have to go through.

  3. Merciful heavens. You poor doll. How wretched.
    I have often thought that the semantics of cancer should be changed – instead of us saying we have survived cancer, or are fighting cancer, we might say we are ‘ LIVING with Cancer’. Living with something sounds so much more positive. After all it never really goes away and we have been trained to be afraid of it as though it is the worst thing in the world. And you are so right to look at the quality of your precious life and wonder why the hell you are in constant pain and is this Living with Cancer or being held hostage by pills.
    My only useful advice is for you to keep a daily notebook of every symptom, every drug you take, every intervention, every doctors visit – every pain, when and where, and look for pattern. One page per day – stuff every piece of info you can think of in there – exercise, what you ate, what you drunk, how much sleep – everything. A month of this will give you a good idea of what is really going on, then you have a document for your doctor to see. Then you can start taking control of your own Recovery from the Medication.
    Also it is never a good idea to stop a chemical overnight – maybe you can discuss doses with your doctor, and gradually wean yourself off. Those poor old doctors are run off their feet. Make your own decisions – but not out of fear of what will happen( eg One out of Three is not an actual statistic, That is fear mongering. Those numbers cannot be true, they are an estimate.)
    But most of all – write that daily journal. Maybe you do already?
    Love celi (love love)

    1. Oh darling Celi! I love your words and feel such energy from them. I will write that journal daily – I do already but just in my head – you know good intentions and all – but you are right -I will do it starting today. I read every word you write every day and you have no idea how much you and the farmy mean to me! Love, love, love!

      1. You will be amazed how documenting your condition and every single conversation with every single medical worker will help you make sense of things – and if they use big words don’t forget to stop them and ask them how to spell it while you write it down. Words are a powerful tool. use a notebook that you can fit in your handbag, kitchen bench, car console, under your knitting, on the bedside table – this goes everywhere with you from now on. Keep me in the loop!! c

  4. Oh Chris, what an awful time you are having; like you say, damned if you do, damned if you don’t situation. You know your own body and the ultimate decisions are up to you my friend; I wish I could help you through it but all I can do is send positive thoughts and hope and pray for you to be relatively pain free. That would be a blessing. Keeping you in my thoughts.

    1. Ah Barb it is so nice to hear from you. I really need to start posting again. One thing I will talk to the doctor is depression. I can’t say I have ever had it before..but that may have something to do with things. Anyway, lots of love to you, yours and all your animals. Love you

  5. It is good to hear someone being honest about this. I have not been through this but know friends who have been or are currently. I wish you the best. In the end, it is your body and you will know what is best for it. I have refused drugs many times over the years. But I have not had cancer so I am not sure what I would do in your case. Sending love and positive thoughts your way. ❤

  6. Yikes. Harrowing course right now. I’m sorry you are having so much stupid discomfort. If your fibromyalgia is calm, does it help the other pain? And how do you tell the difference?
    I hope you have a good talk with your Dr. Its a tough decision but you must look at the whole treatment plan, just like I see you, the whole person. I love you and hope you feel better. Big gentle hug.

    1. Thank you darling girl. I think you were right a while ago when you suggested there may be some depression also. I will talk to the doctor about it next week. Thinking of you in sunny Mexico and sending hugs and loved…

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