Archives for posts with tag: Lupron

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

Today, a “feminine hygiene product” fell out of my purse onto the passenger seat of my car. I looked at it like it was a space alien of sorts.

Why, do you ask? My last menstrual cycle was in 2012. I must be in menopause; I mean, it’s been over a year. Actually, it’s been over three years.

However, my menopause was chemically induced with Lupron injections as part of my breast cancer treatment. I had one cycle after the first injection and then no more. Lupron, incidentally, was not yet part of standard breast cancer treatment when I first started receiving my quarterly injections. It was, however, a part of standard treatment for prostate cancer. You see, Lupron disrupts the signal between the pituitary gland and whatever reproductive organ you might have. In the early days of the shots, there was always a photo of a man, “smiling Lupron man” on the box in which the Lupron syringe was contained. And yes, Lupron was also used with women to treat conditions associated with infertility but maybe the dose was different. I didn’t see women on those boxes in the early days. In time, it became more of a standard practice of treatment for hormone positive breast cancer.

Although I experienced intense and frequent hot flashes and night sweats as a result of jumping into menopause thanks to Lupron, I actually tolerated the treatment pretty well. Tolerating a treatment is pretty subjective. I experienced significant side effects, including up to 50 hot flashes a day, at one point, and disrupted, poor quality sleep. To me, it was a pain in the ass but a tolerable pain in the ass. And in time, the intensity and frequency of these side effects lessened somewhat.

I took my last Lupron shot in November of 2014. Each shot is effective for three months. And you know what? The effects of Lupron are not always permanent. I will turn 50 in November. I was experiencing peri-menopause when I was diagnosed with breast cancer at age 46. I was making my way to menopause. However, the path to menopause is quite variable. Peri-menopause can take years and years and years. During my last oncology appointment,

One of my colleagues has a book in her office called, Have You Started YetIt’s a book for girls about puberty and periods. Remember that time? Not knowing when your cycles would start and hoping that you were neither the first nor the last?

For the record, I was 12. I was relieved. My body worked. I was not going to be left behind by my peers and be left out of the club of maturity. After about a year, began the monthly decent into menstruation Hell. Cramps worse than any labor pains I experienced in childbirth. (Knowing that labor pains were supposed to be 100 times worse than menstrual cramps, I asked for an epidural early and often until I got it. It kicked butt on pain.) The bleeding was horribly heavy, going on for 7-10 days, just like my mom. However, unlike my mom, my cycles were of irregular length, anywhere from 28-42 days. And then there was the nausea and vomiting.

This all improved enormously after pregnancy and childbirth. However, that was 20 years later! So losing my periods with Lupron was far and away the best cancer treatment side effect that I could hope for. Hurray! Yay! Yes, this change was also accompanied by facial hair and it becoming EVEN harder to maintain healthy weight. It still seemed like an awfully good deal to me!

I had my final Lupron shot in November. They last three months. During my last oncology appointment in the spring, Dr. Rinn said, “It could start back any time or not at all.”

So, just like a premenstrual 11 year-old girl, I keep supplies on hand, just in case.

As I parked my car at my cancer center last Friday, I thought to myself, ‘This is my last “double-stick Friday”!’ Friday is not a day I see patients so it is the day I typically choose to be a patient. The first stick is a blood draw, which marks the beginning of every medical oncology appointment. Two vials of blood are drawn. Most of the phlebotomists are amazingly adept, which is very important when working with cancer patients, who have veins that are no stranger to the needle. My blood is always drawn on my left arm because I had lymph node removal on my right side. Prior to cancer, I’d had one I.V. placement when giving birth to my daughter 16 years ago and blood draws on a very infrequent basis for some of my annual physicals. Since cancer, my left arm and left hand have been poked and prodded many times a year for blood draws and surgeries. I didn’t even have I.V. chemo and I can tell the difference.

My name was called by an unfamiliar phlebotomist. But they have all been good so I didn’t worry. Then I noticed that it was taking her a very long time to find a vein. I have what they call “difficult” veins. This is why I often get the I.V. line placed in the back of my hand, which by the way, which is kind of ouchie. I could also tell that she was getting nervous. I close my eyes during blood draws because it helps me relax and also because I like to give people privacy to do their job without my staring at their work. I kept feeling the tap tap tapping of her index finger on the inside of my arm and some whispered nervousness. She stuck the needle and then the draw was taking a really long time. Usually, the phlebotomist lets me relax my fist once the needle has been placed. But she didn’t. She kept apologizing and then finally gave up. It wasn’t an adequate blood draw. Then she peered at my arm again, anxiously fretting as she did so. I kept saying, “Don’t worry about it. It’s okay.” She found a vein on the outside of my forearm. This was a new sticking spot.

Again, more time passed than usual. I didn’t mind the extra needle sticking as much as her distress and repeated apologies. Finally, the vials were filled. She fretted over the bruise she knew would be left and in attempt to prevent it, wrapped my arm tightly with medical tape.

I walked upstairs for my oncology appointment with two bandages on my left arm. It would be “triple-stick Friday”. The last stick would be a Lupron shot into my left hip. I have been getting Lupron shots every three months for over two years. Their function is to disrupt the signal from my pituitary gland to my ovaries, which respond by producing progesterone and estrogen. This is a non-surgical way of “shutting down the ovaries” and putting a woman into a near instant and possibly reversible menopause.

And yes, over two years ago, I entered menopause. At the time, Lupron was more commonly used to treat prostate cancer. There was a photo of a smiling middle aged man on the package that held the pre-filled syringe. This struck a few of us in the breast cancer community as funny. The man on the package looked far too happy with his cancer status and the fact that his testes were going to be “shut down” by Lupron.

In three months, the Lupron will wear off and I will wait and see what kind of change ensues. I asked my oncologist what I might expect to happen. It was quickly clear to me as she explained the possible factors (my natural menopause time and the fact that both Lupron and tamoxifen, which I am still taking can cause irreversible menopause) that this was a hard outcome to predict. I said, “Ah, there are many factors involved and they are all DYNAMIC.” Then I covered my eyes and pantomimed throwing a dart. Dr. Rinn replied, “You got it, it’s like throwing a dart at a moving car.”

Like throwing a dart at a moving car.

A great deal of life is like this. My health, parenting a teen.

Mindfulness is like throwing a dart at a moving car with my eyes open.

Wide open.

I had my penultimate Lupron shot. Yes, my second to last jab, on the right hip this time, with a syringe of Lupron stored in a package decorated with a photo of a smiling African American man, whom I am to assume is to represent a prostate cancer patient. Because, you know, both women and men love it when we get our hormones turned off by Lupron. It’s a party!

Lupron made me infertile by disrupting the signal between my pituitary gland and my ovaries. Yeah, I know, I talk a lot in my blog about breasts, a secondary sexual characteristic. However, the ovaries, primary sexual organs, are also commonly involved in breast cancer treatment. That’s because a lot of breast tumors, including the ones that were discovered in what was formerly my right breast, grew in response to progesterone and estrogen, two female hormones.

I could complain about the fact that a big part of my breast cancer treatment has been both a surgical and chemical warfare on my femininity. Remove my breast, then remove my lady chemicals. Go ahead, make me a man!

I’m not going to complain about this. Yes, losing a breast is a big deal. But that happens to many women, regardless of the hormone responsiveness of their tumors. Having had tumors that are progesterone or estrogen responsive is actually a positive prognostic indicator. Reducing hormonal activity is something that can be done to reduce the chance of breast cancer recurrence.

Chemically induced menopause is rough. I can tell you this first hand. Menopause symptoms, on average, are worse. I can tell you this, first hand. At the peak of my menopause symptoms misery, I had about 50 hot flashes EVERY DAY. Does that sound intensely uncomfortable? If yes, I have done an effective job in describing it. IT WAS RELENTLESS.

Currently, I experience almost no menopause symptoms. Also, I do not menstruate. And it is impossible for me to get pregnant. In other words, I am in a state of bliss.

It is likely temporary. Lupron does not permanently shut down my ovaries. In six months, my body will be adapting to the absence of Lupron. I will be 49 years old. At that time, I may become fertile again. My menopause may pause! Thanks a lot, menopause! Let me get used to you for two years and then throw a wrench into the works!

Yes, Virginia, I’m going to have to start thinking about birth control again. Aaaaaaaaaaaaaah!

The last time I took a pregnancy test was at least five years ago. I knew it was unlikely that I was pregnant, but things were not as usual, and I wanted to be sure.

Based on my family history, I am likely to go back to a peri-menopausal state after I discontinue my Lupron shots. In other words, it unlikely that I will be able to conceive, but still possible. My last method of contraception was an I.U.D, which I loved, but then had to have removed, because it secreted female hormones, and I am not allowed to have those.

Yes, I know that I am solely responsible for contraception. And I have talked to my nearly 50 year old husband about perhaps, just perhaps, getting a vasectomy. The first time I raised the issue was when I was 37 years old. I did not raise it again until I was a breast cancer patient, nearly 10 years later. Neither conversation went particularly well. In my husband’s defense, I probably raised it too early the first time, and the second time, he was likely stressed by the prospect of his wife dying.

I may be a two time champion of menopause achievement. It is not a title that I particularly relish but I guess they are far worse things in life to bear, like CANCER!!!!

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.

As I’ve mentioned on this blog in the past, I am not a psychologist trained in dream interpretation and generally speaking, the area doesn’t hold a lot of interest for me. But in my own flat-footed way, I get information from my dreams at times. For example, when I have a dream that bad guys are chasing me, it tells me that my daytime anxiety has gotten high enough to invade my dream scape so I take it as a cue to get myself to “calm the Hell down”. (And when I used to have Gilligan’s Island dreams frequently as a kid I perhaps should have taken that as a cue to watch less television! I would ask the Professor, “What do you mean you can’t find civilization? There’s a big resort hotel across the water over there, within easy swimming distance!”)

Another popular theme for my dreams has been pregnancy. I remember having my first pregnancy dreams when I was a teen and they continued for many many years. As I teen I thought of what my life would be like, would I be married, would I have children, what would my career be? I think a lot of those pregnancy dreams were about how my identity was shaping up as a woman and since a lot of those dreams involved me giving birth to lots of babies at once, I think I was perhaps more than a little concerned about how I would establish a work/home balance. When I was pregnant, I had birth dreams. My husband had one, too. He said that I gave birth to a baby who looked like a softball with one eye. Not wanting to distress me (thoughtful even in his dreams), he casually asked the obstetrician, “Hmm, so when do you think the baby will get a SECOND eye?”

Now I have middle-aged pregnancy dreams. On more than one occasion, I’ve realized in the dream, “Wait a minute! I’m not in my thirties anymore. I am 47 years old! Good Lord, how did this this happen? This is a very high risk pregnancy!” No one else in the dreams seems to worry about this. And I try to be as excited as I can be for the birth. Even if this cancer mess had never occurred, I would have a very low chance of getting pregnant at my age. And as long as I take Lupron shots, I will be infertile. Eventually, this state of affairs will become permanent as a natural consequence of aging.

So what’s the deal with the dreams? I guess an obvious explanation is that in losing my fertility I am thinking about it. (Yeah I know, “D’uh!”) The only thing I’ve noticed in my attitude about losing my fertility is that it doesn’t really seem to bother me that much. In contrast to much younger cancer patients, I was done having children quite awhile ago and was in peri-menopause when I was diagnosed. I had never planned to bear any children past age 35, anyway so I think I’d pretty much processed the probability that I would never get pregnant again, already.

I think part of this is just the realization that although I am not old, I’m not young anymore. Unlike my historical hang ups with body image, beauty, and weight, I am surprisingly less concerned about getting older. But I do notice it. My father-in-law, Don, a very fit and physically active man in his early 70’s, tells me that it shocks him when he looks in the mirror. Inside he feels much younger and the person looking at him is old. My Great Aunt Blanche had uncorrected vision problems for a number of years. Once they were corrected, she was shocked at her aged appearance because she had not seen herself clearly in quite some time. She died at age 105 years. She was still living by herself and in her own home, tending to her magnificent garden until she was 103. She was extremely fit and good looking for a centenarian.

But we don’t start off life as 100 year olds, do we? And we develop a view of ourselves over the years that changes over time but perhaps not as quickly as we change externally. I imagine that youth has always been prized due to its association with fertility and reproduction. Our culture, however, has gone incredibly and irrationally overboard with youth idealization. Some people decide that they are old when they are middle-aged, that this is a bad thing, and then they interpret the advancing years in a negative way for the rest of their lives. I sometimes tell people that Aunt Blanche chose her burial outfit when she was 80, only to live 25 more years. My grandmother also chose her burial outfit, a decades old pink and black peignoir set, which she used to wear on special occasions. I think she was trying to set her sex appeal setting to Ava Gabor in Green Acres. But it might have just as well been Esther Williams, since Grandma also used to wear an authentic 1940’s era gold lame bathing suit while she was watering the garden. But I digress…

When my father-in-law was a teen boy he asked his grandfather if there were things he missed about being younger. His grandfather replied, “Every age has compensations.” Don told me that he has carried his grandfather’s words with him throughout his life. As for my own life, I am not as fit or beautiful as I was when I was younger but I am a whole lot happier. I don’t sweat the small stuff so easily. I appreciate each day more fully. Finally, I know a lot of cancer survivors say this but I look at aging differently now. Aging is more life. I can’t be old unless I live for a long time. And that sounds pretty good to me.

Christmas at Johnny and Katie Torlai's house. The boys are my brothers. I am the girl. I am guessing the year was 1969.

Christmas at Johnny and Katie Torlai’s house. The boys are my brothers. I am the girl. I am guessing the year was 1969.

For those of you who didn't get the Ava Gabor in Green Acres reference, here she is.

For those of you who didn’t get the Ava Gabor in Green Acres reference, here she is.

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 is  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.

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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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