Wile E Coyote Mama : The latest

It seems that time passes so quickly. I know time isn't something I can keep track of normally, so it seems. I think I'll just list things that are part of my journey and the go into them one at a time.

Tamoxifen: my body reacted poorly with severe depression and cycle changes.
Conventional treatments left: force menopause and treat with drugs available to those past menopause.
LDN option
Hyperbaric treatment option with optional IV Immunotherapy
New primary care physician
body sensitivity testing
lymphedema

I started taking 20mg of tamoxifen about one month after the mastectomy. I seemed to be doing fine on it until the beginning of December. By the end of December I was experiencing a depression that was more intense than I have ever felt. It took me a few weeks to understand what I was feeling. I have a profound appreciation for those who suffer from this disease. The weight I felt and the challenge to do even simple things was overwhelming.

In addition to the depression I noticed a change in my menses. I realize peri-menopause symptoms have been making themselves know in my body for a few years now. What I found was the tamoxifen amped up all those symptoms. I found I was having far fewer days between cycles. The way my CRPS presents, the majority of my breakthrough pain happens during my menses. I found my menses extending 7 days longer than what I had been experiencing pre cancer. This brought extended time for the breakthrough pain. The more pain I am in, the harder it is to function and the more depression I normally battle. Breakthrough pain leads to less activity and less clear thinking. Life changes in a big way when I am in extended pain.

It ended up being a perfect vortex that builds on itself. I find it almost impossible to reach out to people or talk with others when I'm depressed. I find it more challenging to eat the things that are good for me to eat. I withdraw from my family in obvious and in subtle ways. Phones, messages, blogging, texting all become challenging. Proof of that is that by February I wasn't talking with anyone that wasn't forced into my path. Required phone calls took me weeks to make.

When it was suggested that the tamoxifen might be the cause, it was my OT that told me. I took the possibility to my conventional oncologist and was told that it wasn't possible. However, the naturopathic oncologist suggested I lessen my dose. His thoughts go along with what I know about my body. I have a slower constitution than the average person. This means my body takes longer to process and therefore it takes very little of anything to entice a response (good or bad). I've known this is true with other drugs. Yet I didn't even consider that as a possibility for the tamoxifen.

Long story short, I stopped the tamoxifen for a month and found the symptoms I was feeling disappeared. Life is much easier to handle with not depressed - imagine! My cycles are still not regular, but they are more normal for what I was experiencing before the tamoxifen.

So...this means other options for treatment need to be thought about. Currently, I'm introducing the tamoxifen again. I'm starting with 5mg a day. However, this may not be a sufficient dose to help prevent cancer growth.

The conventional approach would be to see about inducing menopause and treat me as such. What my consultations and research has led me to believe is the drugs that are given to post menopausal women have a tendency to cause more side effects than the tamoxifen does. Add this to the fact my CRPS is most severe during times of low estrogen, and it makes this course of treatment not one I'm willing to do.

Quality over quantity. This doesn't mean I'm refusing to treat myself and intend go out in a big ball of flames. I want to live a long and full life. I want to have a body well enough to enjoy all of the time I am given.

That leaves a more holistic, naturopathic, and integrative care model.

There is a drug that is being used to treat CRPS. I'm still not finding all the studies on it...and I don't know if it will work on the type I have. But I'm willing to try. The treatment is called LDN or Low-Dose Naltrexone. I am hoping the drug will allow me to get off the amitriptyline completely. This would free me from the side effects of the amitriptyline and hopefully allow me to get back into exercising on a consistent basis. I am so, so ready for that. So ready. Changing to LDN isn't immediate, but it has a ton of potential.

For cancer treatment I will be doing Hyperbaric Oxygenation Therapy (HBOT). This should discourage cancer growth and amp up my immune system. There is the possibility that it would help me with the CRPS, too.

If the LDN works, and I have added mobility - then I'm hoping I can up the tamoxifen dosage. Hopefully the HBOT will give a boost to all of my body, allowing it to recognize the cancer and take care of it naturally.

Optional therapy would be immunaltherapy via IV. I'm having such a negative visceral response every time I think of having IV therapy, so I am cautious. I've been working on overcoming this response, and so will keep it as just an option for now.

Sometime shortly after my mastectomy my primary care physician left the practice to have her twins. I am incredibly happy for her. Hopefully she has them in her arms as I type.

It took me several months to find a replacement. I'm now seeing Dr. Kerry Schafer (was Pulliam) with Healthy Living Family Medicine. I am excited to have this experience. She is looking at me as a whole and is seeing if there are more things we can do to support my body and strengthen it. Along these lines, I went and had the VEGA testing done. It has shown what my body is sensitive to. Most of the things I showed a sensitivity to I have already acknowledged. It means, though, that beyond knowing, it might actually do me good to avoid or eliminate my exposure to those things I'm reacting to. This will be something that is challenging for me, as I have already altered my eating considerably. However, I may be able to re-introduce foods as I lessen the burden my body is dealing with.

For most of my healing journey, I have considered myself a whole body with layers piled on - similar to layers of clothing. As I started taking out the stressors my body was dealing with, my overall health improved. Over the last decade, I've been actively un-layering. Because I can still see the improvements happening, I will continue to try and lessen what my body responds negatively to.

The beginning of April found me waking up to a swollen arm and hand. Lymphedema had begun. I hadn't been aware of the full potential of getting lymphadema. I guess around half of all who have lymph nodes surgically removed end up with this condition. It was a surprise to me, and something that I'm finding I need time to adjust to. Amy, my OT, has helped me in so many, many ways. She was able to walk me through what compression I needed and measured to make sure I'm getting the right fit. The compression sleeve and glove I now have will hopefully slow the swelling rate down. Since I began wearing the sleeve and glove, I have had little noticeable change in swelling. As time progresses, I'm hopeful we can minimize it's effects. However, I've flown and had some swelling happen acutely. There has been a bit more swelling under my arm, too. Changes. I have foam I wear under my arm and on my hand while I sleep. If I continue to swell, I may have to look at a full sleeve to wear at night.

Compression means pressure. Because I need both the sleeve and glove, I have to build up the strength in my hands to hold things. This means I am having to slow down my knitting. I have now gotten to the point I can hold silverware long enough to finish a meal. I still have trouble holding a pen to write. Just more adjustments and change. It has been so hard to be gracious with my new reality. Knitting is my therapy. It soothes me and relaxes me. Not having it as my go to activity has been hard and I'm still having to adjust.

Have I mentioned how cool Amy is?! Well, she found a site that has great patterns for the compression sleeve/gloves I need.

I have two patterns right now.