Not a Journey…just a Trip

I am warning you that this post is not a very positive one so if you choose not to read it I will understand.

I used to consider this whole cancer thing a journey but it has become a trip that I am not wanting to be on anymore.

Although I am still healing from surgery with two small open wounds yet on the right side, it has given me time to think and pray…ALOT.

Most of you know that making the choice for Chemo was very hard for me. It went against everything I believed about treating disease in the body. What I have noticed about modern medicine is that they tend to use scare tactics to get you to make a decision that they are happy with. Of course they don’t want to be sued for not giving you what they believe is an accurate treatment plan. The doctors told me that my tumor was 7cm according to an MRI which is supposed to be more accurate than a mammogram or ultrasound. What they didn’t tell me was that these scans can pick up simple inflammation and when read, the radiologist may believe that it is cancer when in reality it is not. I didn’t find this out until after my surgery to remove what was left after the chemo was completed. What they told me was still 3cm of cancerous tumor after the chemo was in reality nothing but healthy breast tissue. All removed and tested.

Oncology just kept telling me that the study they went by recommended certain treatment. I asked for the study and all I got was a paragraph of the abstract from it. No link for the entire study. I have no idea how many people were in it. What their diagnosis was, how old they were, where they were from. Nothing. I was just supposed to trust that these doctors knew what was best for me.

I went to see the radiologist in Appleton and she tells me that the recommended radiation is to radiate the lymph nodes – which I had no lymph involvement at all – and to radiate the entire breast areas for a total of daily M-F for at least 6 weeks. A week later I go see a radiologist in Madison and after consulting with the surgeon who did my lumpectomy she recommends No radiation to the lymph and only 4 weeks of M-F radiation to the breasts. Of course they minimize the side effects and tell you there’s really NOTHING to worry about. You see, radiation can cause cancer. It can also cause lympodema, heart damage, lung damage, damage and breakage of the ribs, just to name a few. Of course there are no studies on what it does to the immune system. If it damages it, which I am sure it does, then how many suffer with constant infections, MS, Lymphodema, diabetes, lupus or neurological disorders for the rest of their life? Where a common cold turns into bronchitis or pneumonia every time. Or that the immune system actually causes cancer to occur throughout the entire body? Of course no information on that because we don’t want people to know that chemo and radiation can cause immune system damage.

I was diagnosed on March 23rd, 2018. Since then I have had 16 chemo treatments, 2 surgeries (went from a DDD cup to a B cup) and am still recovering from the surgeries 10 weeks later. I spent 6 weeks sleeping in a recliner only able to go to the toilet and eat on my own. Then to only being able to sleep on my back in bed for another 3 weeks. Screaming in pain just to take a shower.

We went from being a married couple to being more like a parent/child relationship. To say it was heart wrenching is putting it mildly. Of course if you cry or show any unhappiness in a doctors appointment the dr will automatically go to drugs to help your mood. No discussion of side effects, which some of the drugs can cause suicidal thoughts and withdrawal symptoms similar to oxy’s. But its a “let’s just try it and see how it goes” attitude and if there’s side effects let’s just cross that bridge when we come to it.

Chemo caused menopause for me as it does for almost all women which brought on hot flashes for months now. It got so bad that I was barely sleeping at all because I was either freezing cold or sweating and needing a shower and bedding change. I tried several things and nothing really helped. In desperation I asked the dr for help 3 weeks ago. She put me on effexor normally used for depression and said it helps many women with hot flashes. It did help, unfortunately after a week I began to itch all over and even had hives a couple of times. Thanks for more problems to deal with. After 3 weeks they told me to stop taking it but offered no immediate help and said I would just have to wait 2 weeks until I could see my doctor. So enjoy your side effects from chemo is basically how that went.

I am just DONE. I can’t take any more of this. There is no guarantee that any of the treatments they offer will prevent the cancer from returning. They say that there’s a 30% chance of it returning now but would drop to 10% according to their study, if I have the radiation too. It is more like a guessing game and they are not sure of anything. I took pain killers and round the clock advil and tylenol at the highest dose for 2 months. Who knows what it’s done to my liver or kidneys but the oncologist has no concerns about it. Even though regiments like this have caused liver and kidney damage in people she has no concerns at all. We won’t know if the chemo will cause any heart damage until a year or two down the road as it doesn’t show up before that. Well it’s not her body is it?

Chemo also caused neuropathy in my hands and arms. After chemo my right arm went numb and stayed that way for over an hour so they checked to be sure I wasn’t having a stroke. The diagnosis was neuropathy and I should take more gabapentin. I was taking 300mg a day already and they uped it overnight to 1800mg a day. They never told me that this drug must be weaned off of as it can cause some very severe withdrawal symptoms. Again, advise a drug and offer no information to the patient on how it could cause severe side effects. I had not idea until Tim looked it up online because I was starting to have leg and arm muscle jerks all day long after I had been on it a few weeks. I was just going to quit taking it but that is NOT a recommendation at all. But my doctor never told me that.

Our marriage has suffered, our family life has suffered. My health has suffered. I still can’t open my office due to issues in my left arm from scar tissue and muscle loss due to all the inactivity for 3 months. Tim had to take off from work for over a month to take care of me because insurance would not cover any in home care and we couldn’t afford it on our own. We have suffered financially as a result and Tim has had to take a 3rd shift job so he can still keep his carpet cleaning business going during the day and on weekends. We applied for grants and only a few were able to help us with things like car payments. We have a broken water pipe to fix in the kitchen when it warms up due to the cold temps and insulation to replace.

And today I just found out that I can’t get mileage reimbursement for any of my Madison appointments so I will be canceling those future appointments as they were just follow ups on surgeries anyway. One trip is a full tank of gas. We’ve done wound care for the last 12 weeks at home anyway so might as well just do the rest on our own. It would have been nice of badgercare to tell me the mileage got denied back in December, instead I had to have a social worker dig for the information. But that is government health care for you.

I am just so tired of appointments and clinics and the doctors who don’t want to listen to my concerns. Minimizing side effects like they are no big deal at all. So with that being said I have decided I won’t be doing radiation or take any of the hormone blockers for 5-10 years like they are recommending. The blockers have horrible side effects. I want my life back. I want quality of life. I just pray that what I have done so far has not jeopardized my future quality of life and come back to haunt me later.

I never realized how lonely cancer is. How much it robs from you even if you try not to let it. How many beautiful things it literally destroys. And then our only hope from western medicine is treatments that can cause more cancer. How is this even fair? How can they sit and tell me at my first visit that they want to “cure” me when they have no idea if their treatment will cause more disease and more damage?

I envy those who never feel defeated through all of this. I envy their strength and courage because I don’t have any of that left. I want to laugh again. I want to be happy again. I want to enjoy life and not be sick every day with treatments and medications.

Is all that really too much to ask for?

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2 Replies to “Not a Journey…just a Trip”

  1. Jeanne, hugs my friend. This was hard to read only because i didnt know this side of your story and feel that I missed an opportunity to help in some way. I understand your feelings about wanting your life back and not wanting to go on for more treatments. But please don’t feel that those you have envied didn’t feel the same way as you. They may have not verbalized it. You are an inspiration to so many and YOUR story is an important one and may be the one that helps someone else out. Again Hugs!!!

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