Tag Archive | side effects

Hot Shots! Part Deux

Despite a slight delay because Pennsylvania either can’t count or couldn’t figure out distribution, I finally received the second dose of the Covid-19 vaccine. I am grateful and feel a certain liberation in knowing that I will not die or be on a ventilator if I were to contract this disease. As I see more and more people getting vaccinated in my little corner of the world, I am hopeful that a move closer to normal is in sight. I am glad to live in a community where vaccines are desired and I am not really aware of many people refusing to get them. There is a light at the end of the tunnel.

Unfortunately, the supply is still not up to demand, but I am hopeful we will get there now, with funding allocated to resources to expedite vaccine distribution. It’s still enormously frustrating to try to get an appointment. I have been trying for four weeks to get an appointment for my husband. I got him on multiple wait lists. I got him registered with a local hospital chain. And I was on multiple sites, every day, multiple times a day, hoping a cancelled appointment would pop up. Perseverance paid off and I was able to secure an appointment for this Friday afternoon, 20 miles away. But it shouldn’t have to be this hard. If you work for a living, or aren’t computer savvy, or don’t even have a computer, you’re probably out of luck in the short term. And you have to be super fast, or you miss it. I feel everyone’s frustration and am hopeful this will get better soon.

In terms of my reaction to the second shot, I am doing pretty well. I have a low grade temperature and feel like I was hit by a truck, with achy muscles, joints, and lymph areas, but it’s tolerable. I know many of who have had severe chills, higher temps, and more pain, so I am not complaining at all. I’ll take this temporary inconvenience.

It was suggested that I hydrate before and after the shot, and I did that. So, at least anecdotally, it seemed to work. (It did not work for my dental hygienist who I saw on Friday afternoon, but it certainly never hurts to hydrate.) When you go for your second shot, my advice is to plan nothing the rest of day, and for the next day as well. I plan on spending most of my day with my butt on the couch. I fully expect to be back to normal, such that it is, tomorrow.

I know I am blessed that my perseverance paid off, along with a bit of timing dumb luck (thank you, Karen F. for sending me the link to Hometown when you did!). Good luck to all of you still struggling to get appointments for yourself or your loved ones. I hope you are successful soon.

IMDb: Hot Shots! Part Deux (1993)

Sleeping with the Enemy

Or not sleeping, as the case may be.

Perhaps I am being melodramatic referring to my Aromasin (meds) as the enemy (and I apologize to those of you who might have thought I was referring to my husband…!), but the cumulative side effects of my aromatase inhibitor are catching up to me.

I started the Aromasin (also known as Exemestane) on March 7th of last year. I was handling it remarkably well, especially considering my experiences with Femara back in 2013. I had no side effects for quite a while, with the exception of an occasional hot flash and just being warm all the time. I could handle that. But over the past few months, other side effects are creeping in. I have some joint pain in my hands and feet, and that’s tolerable. It’s the absolute lack of sleep that is getting to me.

Most nights, for the past few months, I do not even attempt to go to bed until midnight. Then I tend to lie awake until wee hours of the morning. Tossing, turning, thinking, sweating, throwing covers off/on, and staring at the ceiling. I have started to just get up to do something productive rather than be continually frustrated with my inability to sleep. Last night, as an example, I did my menu plan and submitted my online grocery order at 2 a.m. I designed a t-shirt on my Cricut (for crafting, if you aren’t familiar), and I played some games on my phone. I returned to bed at 2:30 am and fell asleep about 4:15 am. One night, just a few weeks ago, I didn’t even go to bed until 5:15 am! Just about the time my husband starts his day.

I’ve always been one of those people who needs 8-10 hours sleep, so 2, 3, 4 hours just isn’t cutting it.

I’m not really sure what to do. I mean, when it’s a side effect of meds, do the usual things work? I try to limit my caffeine (no more than two cups of coffee a day) and certainly none after noon. I should probably do more reading and less time on my phone/laptop because of the light. I already take magnesium (which has helped me tremendously in the past). Melatonin and lavender have never really worked for me. It’s just something I think I’m going to have to suffer through for the next 5-10 years, which is sad. I do love to sleep!

If any of my BC sister warriors have suffered through this, any suggestions? And if any of you are up late, message me! We can chat!

* * * * * * * *

I would like to get back to recipe sharing again, so I’ll start with our New Year’s meal!

Growing up, January 1st meant my mother’s amazing roast pork and sauerkraut. Even when I ate meat, my preference was the sauerkraut. I loved that it cooked in the juices of the pork roast and it was one of my favorite meals of the year. But then I became a vegetarian and the pork had to go! But sauerkraut is still an amazing food!

Made from cabbage, sauerkraut is a cruciferous food with lots of anti-cancer properties. And one cup of sauerkraut is only 27 calories, with 4 grams of fiber, 35% of your Vitamin C requirements, 21% of your Vitamin K, and 12% of your iron for the day! As a fermented food, it contains healthy bacteria for great gut health. What’s not to love?

Enter the Tempeh Reuben! This is a twist on the fattier, less-healthy corn beef. It is totally one of our favorite meals. I pile the sauerkraut on top of my marinated/pan “fried” tempeh (no oil is used in the process), with a Russian dressing made from vegan mayo. It’s a delicious sandwich any day of the week, but it satisfied my sauerkraut fix for our New Year’s tradition!

If you make this, or if you have any questions, let me know! Enjoy!

IMDb: Sleeping With the Enemy (1991)

A.I. Artificial Intelligence

Most people, when they hear the term “AI”, automatically think of artificial intelligence. Unless, of course, you are a breast cancer survivor. Then AI means something completely different. For us, it stands for “aromatase inhibitor”.

What exactly is an AI? Susan G. Komen defines AIs as follows:

“Hormone receptor-positive breast cancers need estrogen and/or progesterone (female hormones produced in the body) to grow. (AIs) lower estrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into estrogen. This slows or stops the growth of the tumor by preventing the cancer cells from getting the hormones they need to grow.”

The three aromatase inhibitors are Anastrozole (Arimidex), Letrozole (Femara), and Exemestane (Aromasin).

For those of you who have been following along here from the get-go, you remember that I took Femara/Letrozole. You also remember how very unpleasant it was for me and how, after about 6 months, I stopped taking this drug. I felt like $h*t and struggled with insomnia for several months straight. I was in pain all the time and the lack of sleep made me feel like a zombie. It was pretty nasty. I sought a second opinion at that time, reviewed a bunch of statistics, and was given permission by all my doctors to stop taking the Femara.

Fast forward to today, literally this morning, when I started a new AI. I am terrified of the side effects, but agreed to give the AIs another whirl given my recurrence. My Penn oncologist has opted for Aromasin, since it is molecularly different from the Femara and Arimidex. Since these last two closely resemble each other, it stands to reason that if I had trouble with one, I would have trouble with the other. It’s hard to believe that I would be terrified of something so tiny and unassuming:

But one glance at the side effects and it’s easy to understand the fear: hot flashes, muscle and joint pain, headache, fatigue, nausea and/or vomiting, osteoporosis (I have to go for a dexascan in a few weeks to baseline), heart problems, changes in mood, depression, insomnia, vaginal dryness/atrophy, and loss or thinning of hair. So your risk of dying is lower, but when I was on this previously, I felt like I was dying already.

On the plus side, my Penn oncologist thinks my side effects may not be so severe this time. She indicated that women who are thrust into menopause by chemotherapy have a harder time, as was my experience back in 2012. There was no opportunity for my body to gradually decline on hormone levels; it was more like “bam!”, you’re in menopause. So the drop in levels from the AI was significant, resulting in more severe side effects. This time it’s 7 years later, so I’ve had the chance to settle into menopause. Theoretically, the drop will not be as significant and the side effects more tolerable. Fingers crossed that is my experience.

If it turns out not to be the case, there are still other options to consider, but I need to give it at least 30 days.

I did recently learn that soy is actually an aromatase inhibitor, which might explain why those who follow standard Asian diets have lower incidence of breast cancer. If things get really bad, perhaps eating soy every day will be an option. Stay tuned.

Day one of my AI is here. Wish me luck!

 

IMDb: A.I. Artificial Intelligence (2001)

Announcing to the World

About six weeks ago, I mentioned that I was in the process of writing my first (but hopefully not last) book. I had planned to give a sneak peek between then and now, but it’s been a crazy six weeks, trying to wrap up the book amidst all of our busy schedules. This book experience has been amazing and I have learned SO much. The biggest lesson? That the easiest part of writing a book is… writing a book! It’s all the other stuff that’s hard, especially when you are self-publishing. Getting Word to cooperate when you are trying to format your manuscript into a template… frustrating! Figuring out the best way to create a cover, after multiple attempts using Canva and KDP failed… even more frustrating!

I am grateful to the love, support, and help of so many people who got me through the frustration, taught me how to “layer” in PhotoShop, or fixed a file for me! Those who shared their thoughts on page colors and font selections, who proofed and re-proofed, edited and re-edited. I am immensely blessed to have so many people who helped me on this book-writing journey!

With that, I am so very excited to announce that my book, “Beyond the Pink Ribbon: What I Wish I Knew About Breast Cancer (Before I Got It)” is now available in paperback on Amazon!! Woo hoo! In addition to being exciting, this is also a bit scary and surreal for me. To write a book is to really put yourself out there, making yourself really vulnerable. It’s a huge step out of my comfort zone, but a dream I have realized after several decades of wanting to be an author.

The book, as the name would imply, details my journey from diagnosis to returned health. I think it will be a great resource for newly diagnosed women, even if a different diagnosis than mine, and for women who might just be trying to lower their risk of breast cancer in the first place.

I do ask that if you purchase and read the book, that you return to Amazon to do a review. It’s apparently how one moves up the Amazon rating scale, which has benefits (that I am still learning)!

For those of you who prefer e-book, I am working on this and hope to have that released by early next week.

IMDb: Announcing to the World (1950)

Cape Fear

As a two time winner of the cancer lottery (two unrelated cancers), the fear of getting cancer again is part of my daily existence.  With every ache or pain, every bruise, every symptom, I can’t but wonder if it’s cancer-related.  I realize this sounds a bit paranoid, and it probably is.  But I would be lying if I didn’t say that the thoughts of another cancer scares the shit out of me.

The thought of cancer is always with me.  It’s there with every morsel of food or drink that I put in my mouth.  (Is it a healthy choice?)  It’s there with every movement that hurts and reminds me of the side effects.  It is there every time I look at my son and I wonder if I will get to see him grow to be a man.  I know that’s not a guarantee for any of us, but there’s a greater awareness of mortality when you have to face cancer head on.

This past week has been harder for me than usual, for some reason.  There are the ongoing Femara side effects which seem to accumulate after a period of time (prompting me to take a break).  I am in some form of pain always.  There are those UTI symptoms, with a negative UTI lab result.  There’s the headache that has persisted a few days this week, and pain that shoots from my right shoulder blade down to my fingers.  All this pain starts to get to you after a while.  How do you know what’s “just” a side effect, what’s something normal (sinus infection, stress, etc.), and what’s something that you really need to pay attention to?  For me, I guess I need to pay attention to all of it, but it’s exhausting.  In the absence of solid answers from the medical community, I spend a lot of time reading and Googling and chatting with others in the same boat trying to make sense of it on my own.  This is good and bad.  Sometimes I find an article that makes me feel relieved; other times I find something that scares me.  But I want to be on my guard and can’t wait to see my doctors to get answers.

Maybe over time my paranoia will subside.  I sure hope it does, as I think it would drive me crazy after a while.  I don’t want to forget it, as the cancer perspective allows you to look at life differently and to appreciate the little things.  It’s the fear that also drives me to do all the healthy things I can for my body.  I don’t want to get complacent or lose that fighting instinct.

A friend posted the following prayer on Facebook tonight and the timing is so perfect.  I have been praying for healing in a multitude of ways.  Loved this one!  (Thanks, Beth!)

New recipe tonight… Roasted Cabbage.  It sounded a lot better than it was.  Maybe it was because I excluded the bacon bits!  🙂  I’m trying to increase my cruciferous vegetables, but this wasn’t the way to do it.

Cape Fear (1991) – http://www.imdb.com/title/tt0101540/

Hormones

I just got done enjoying a bowl of the 5 minute banana “ice cream” that I referenced the other day.  This is my new favorite treat… and guilt-free!  Ethan and David even love it!  I just can’t believe there’s no dairy in it.  Ethan was clamoring for more, but I didn’t have any more bananas frozen.  I think I need to stock up on those!

The other day, a call to my financial adviser got me into a conversation about hormones.  Apparently, a few of them in the office were seeing a local doctor who specializes in treatments that focus on restoring / stabilizing hormones in the body.  They thought it might be something I would be interested in, and that it might help me.  I did check out his website and learned that he has a lengthy waiting list.  New patients need not even call until January 2014.

So I tried email, just to see if he would even be able to help me.  I sent an inquiry, providing a Readers’ Digest version of my history, and asked if he thought there was anything he could do for me.  He didn’t answer that question directly, so I’m assuming I’m a lost cause!  🙂  But following is his response:

The treating physicians have only one concern: to provide whatever treatment will delay the return of the cancer by the 5 year point. Aromatase inhibitors do that, to some degree. They completely deprive the breast cancer cells and the rest of your body of estrogen. The estrogen deprivation does appear to slow cancer cell growth–if there are any live cells left, but at the expense of your quality of life and your health. Not only do you feel terrible, but you are losing bone mass and you have an increasing tendency towards estrogen-deficiency-related diseases: diabetes, heart disease, and cognitive dysfunction. 

I do not know the exact overall 5 year recurrence-survival benefit of using an AI, nor how that compares exactly to the costs to quality of life and long-term health. I did see one mention that after 5 yrs. of AI therapy the drug causes enough problems that it overweighs the cancer-survival benefit, that is why they limit therapy to 5 yrs. Basically, you need to look into all the risks and benefits and make your own decision. Pub Med online allows you to search for medical articles.

I guess none of his response is a surprise, and it was refreshing to have an MD who spoke honestly about the damages these drugs do to one’s body.  But his response really hit me hard.  “At the expense of your quality life and your health…”  “Estrogen-deficiency-related diseases…”  It’s amazing to me how no one really talks to you about the trade offs.  Since I went back to the Femara (but not every day), I continue to struggle with this raging debate.  And I struggle with symptoms…what’s a real issue and what’s a Femara side effect?  It’s so hard to tell, and it’s scary.  (More on that tomorrow.)

His response really made me think, too, about all that our hormones do.  As women, I think we tend to associate hormones with reproduction, but they do so much more than that.  Here are some excerpts from the website hormonerestoration.com:

Hormones are the most powerful molecules in our bodies, controlling the function, growth reproduction, metabolism, and repair of every cell. Our bodies require optimal hormone levels, just as they require optimal levels of essential vitanutrients: vitamins, 
fats, amino acids, and minerals.

Insufficient hormone levels have been shown to contribute to many of the disorders and diseases that we suffer as we age–
diabetes, atherosclerosis, high blood pressure, fatigue, loss of muscle strength, osteoporosis, autoimmune diseases, cognitive 
decline, increased cholesterol levels, blood clots, increased belly fat, loss of libido, depression, and some cancers.

It really makes you appreciate the wide spread damage that hormone depletion can do.  Just more to think about, I guess, in my ongoing personal debate.

By the way, no call from the oncologist yet regarding my colonoscopy, and as for the urologist, he wants to see me.  Appointment is in three weeks…

 

Hormones (2008) – http://www.imdb.com/title/tt1208717/

Drugstore Cowboy

For the last two weeks, I have been taking my Femara every three days and monitoring my blood pressure.  So far, so good.  As of yesterday, I moved to my “every other day” mode.  I will continue to monitor my blood pressure and the other side effects to determine if that frequency makes sense.  I have been taking two herbal hormones diligently for the past few weeks also — Flash Ease, which is Black Cohosh and Dong Quai Root, and Wild Yam & Chaste Tree.  Those really seem to be helping both my energy level and the joint pain.  While the joint pain is not completely gone, it has certainly lessened.  I am hoping that prolonged taking of the herbal hormones will help even more over time.

I had a call tonight from my dear college friend, Michele, who offered her support and perspective on the whole Femara topic.  As a 10 year survivor of breast cancer, she’s “been there”, and understands what I’m feeling more than most.  She also started with Femara, way back when, and was switched to Tamoxifen after the Femara was causing similar side effects.  Eventually, she was given permission to stop taking it all together.  As she reminded me, it really is a crap shoot sometimes.  You can follow the doctor’s orders to the letter of the law and still get a recurrence.  Or you can be completely a bad patient, not listen to a word, and live a long life.  It’s really up to each person to listen to their own intuition, make the right decisions for themselves, and make the most of life.  All great advice!  (Love you, Michele!)  I’m encouraged that her doctor gave her permission to stop taking it and she’s a 10 year survivor.  (I have no delusions that MY doctor will give the same permission.  She, of course, would not be happy with my Femara vacation, nor my self-imposed schedule…hence my cowboy reference.)

So for the time being, we will try the every-other-day approach and monitor vitals and side effects.  And we’ll go from there!

In other news…

Dad is down to SIX radiation treatments and it can’t end too soon for him and Mom.  He’s really tired, has lost more weight, and was nauseous this week.  I”m glad the weekend is near for him to recover a bit before the final week.

In a conversation with someone at work today about supplements, it occurred to me that I have not been taking my Vitamin B (which is recommended for vegetarians).  Oops!  Need to get back on that!

My wheat grass is growing nicely.  Sprouting like crazy!

wheat grass 2013-08-22