Archives for posts with tag: Tamoxifen

I’m cold. I mean that literally. It is winter and I am cold.

Obvious, huh?

Not so obvious, actually. Through the miracle of insta-menopause, which was part of my cancer treatment, I was hot for a long time. I would find myself stripping down to a sports bra in February during an outdoor walk. I stopped wearing tights with my dresses and went bare-legged through many winters.

Last year, I started wearing footless leggings under my dresses. This year, I notice that my workout clothes are not warm enough. I also noticed that I have a shortage of long-sleeved dresses.

I am longing for the two sweater dresses that I gave away to charity a few years ago because I could never wear them. I always overheated.

Yes, my friends, my body continues to heal from the effects of cancer treatment and the natural hormonal changes that come with middle age. My personal thermostat is much more like it was before the years leading up to cancer when I was in peri-menopause.

Sensation continues to return to my torso, the areas of my surgeries. Although not fully restored, I no longer feel numbness when I am upright. It is odd how a lack of sensation feels very much like something, like carrying around a weight.

After nearly 7 years of survivorship, I am still healing. Perhaps, if I knew this would be the case back in 2012, I would be fearful. But today I find this to be a gentle miracle, an aging body that is better able to sense cold, pressure, and gravity.

May 2019 bring you peace and healing, dear friends.

-Elizabeth

As you know, I have been working to break the brain draining choke hold that nearly a year and a half of bad sleep has wrought upon me. There have been peaks and valleys but mostly, I am sleep deprived. And now in the northern latitudes, it has gotten very cloudy and very dark. Without the long summer days to give light to my mind, I find myself being incredibly and totally fatigued during the day.

And it hasn’t been like I haven’t been doing anything to help myself sleep well. I exercise every day, I meditate, and I try to keep my stress level to a dull roar. I also started taking Chinese herbs for sleep prescribed by Dr. Wang, who does my acupuncture. They taste like a combination of dirt and mushrooms. Surprisingly, they aren’t that bad. At least they don’t taste like feet. I also take magnesium citrate and melatonin, as recommended by my naturopathic oncologist. The magnesium also helps with the leg cramps I get from tamoxifen. I have many patients as well as my daughter who take melatonin with very good impact on improving sleep onset (falling asleep). However, I’m not sure it’s doing anything for me.

I saw my psychologist last Friday and she gently suggested that I might ask my physician for Ambien to help me sleep though the night again as lately, I have been waking up 6-8 times a night, often with night sweats, which are side effects from Lupron. I have been trying to solve this problem on my own. I also started using blue light therapy since my energy level usually gets lower with our short, low on sunlight days. The blue light has helped in the past and it seems to be helping now by increasing my day time alertness. It also seemed to be knitting the fragments of my night time sleep together a bit so that I was getting longer amounts of sleep. I noticed that I remembered more dreams and felt slightly more rested when I awoke each morning.

I had an appointment with my medical oncologist last Friday. I have not previously complained about sleep. But I did this time. She was empathetic, as usual, and suggested that I start taking gabapentin to reduce the night sweats and help me sleep at night. Preliminary data would suggest that my sleep has improved significantly since starting the medication.

Stay tuned. So far so good. Sweet dreams.

After a couple of recent inquiries about my physical health, I realized that I have not provided an update for some time. So I will take out a bit of time from my concentration on my emotional and cognitive health (a post about my challenges with attention, organization, and memory is forthcoming) and focus on my medical status.

Medications

I started taking Lupron injections last summer. I now get one every three months and will continue to do so for a total of two years. Lupron “shut down” my ovaries by disrupting the signal between my pituitary gland and my ovaries. So my ovaries think my days of monthly cycles are over and done with. I am currently infertile and functionally in menopause. However, Lupron induced menopause is reversible. Once I stop taking Lupron, I may start my cycles again and go back to being peri-menopausal.

In October, I started taking tamoxifen, another hormone blocker. I will take that for a long time. At the time of my diagnosis, the usual treatment protocol was to take it for 5 years. Subsequent research suggests that 10 years might be better. I’m not going to worry about it because we’ll have more information by the time that decision needs to be made.

Other than those stupid hot flashes, occasional foot cramps, and having to work out harder to maintain a healthy weight, I have been very lucky and tolerated these medications very well. Knock on wood.

Scans

I have an annual diagnostic mammogram and an annual MRI, staggered by six months. I had a “clear” mammogram last January. I will have my next MRI in September, six months after my TRAM surgery. (Recent surgery makes it harder to read the images for MRI.) Both diagnostic mammography and MRI missed three of my four invasive tumors as well as a 6cm area of DCIS. A disadvantage of being “young” (under 50) in the breast cancer world is that our breast tissue tends to be denser because there isĀ  higher water content. The water shows up as white on imaging as does cancer. So it’s hard to know. I have also read measurement research on the sensitivity and specificity of breast imaging techniques. Imaging should get considerably more sensitive as I age. However, the specificity of mammography in particular is not great. As you know, there is a high rate of false positives. But that was not my problem. My problem was of false negatives.

Surgeries and recuperation:

As many of you know, I had seven surgeries between 6/27/12 and 3/11/13. I know I mention this a lot. I also know that it is not a race as in she who gets the most surgeries wins! Let’s just say that one of the reasons I keep mentioning it is because I am still trying to believe it. And I kept my sanity that whole time. And I know that many of you out there have been through similar and even rougher treatment protocols. Let’s pause a second to reflect on our resilience. It’s really rather incredible.

Back to me, sorry, I told you that I was going to write a post about my ever-changing cognitive functioning. I had an appointment with Dr. Welk, my plastic surgeon last Friday. Even though I was feeling good and nothing appeared to be amiss with my healing, I was kind of nervous about the appointment as I had not seen him since April. I am happy to report that nothing appears to be amiss.

I am still slightly swollen from my TRAM surgery, which was 4 1/2 months ago. A significant portion of my sensation has returned to my abdominal area. There are no areas that are totally “dead” to heat, pressure, etc. I intermittently feel those little electrical shock sensations associated with nerve regeneration, especially right after my acupuncture appointments. And then after several hours of on and off shocks, I notice that I have more feeling. I just now read a plastic surgery abstract from a very small study of women post TRAM surgery. A good number of them had at least some sensation return. (Yes, it would be better to read the entire article but the journal was charging $30 for the privilege.) I had not expected any sensation to return and so had not mentioned this issue to Dr. Wang. I will talk to her about it next week when I see her. Perhaps there could be some welcome improvement in the “being able to feel stuff” department.

An unexpected positive is the fact that my abdominal strength is much better than I expected it to be. I had a pedicle TRAM procedure which means that one of my rectus abdominus muscles was sacrificed to create a blood source for the transplanted tissue. Microsurgical procedures can be used to prevent this but I was not enamored with the higher rate of complications and failed surgeries. There is a little bit of controversy regarding the pluses and minuses of these procedures but I am happy with the choice I made.

I am seeing Dr. Welk again in October after my follow-up MRI. I may have another set of plastic surgeries, which Dr. Welk said could be done in one office visit. (Dr. Welk’s time estimates are like dog years so this means two office visits.) The purpose of the procedures would be to improve symmetry between lefty and righty. But at this point, I don’t have to do a thing and Dr. Welk was very clear that this was a perfectly reasonable option. He provided a range of possibilities including doing breast enhancements on each side, which would involve getting a set of implants. For me, this is a big “no, thank you”. He was fine with that.

Healthcare visit schedule:

Currently, I see my breast surgeon every six months, my medical oncologist every three months, my naturopathic oncologist every 4 months, my Chinese medicine physician every two weeks for acupuncture, and my psychologist every two weeks. And I continue to get a full body massage every three weeks, something I have done for nearly 13 years now for stress and chronic pain management. (I had chronic neck pain for twelve years during my 20’s and early 30’s. It went away after two months of massage.) I typically have 1-3 healthcare visits a week, about half of which are across town or in another city. I am very lucky to have such wonderful care. The logistics, however, contribute to a frequently interrupted life and work flow especially on top of parenting duties.

So that’s the state of the union as of today. I will keep you posted and thanks to all for your continued support and concern.

Heart Sisters

For women living with heart disease

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

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