This myeloma warrior HATES chemo brain. And guess what? It's REAL!!!

From The Myeloma Crowd (www.myelomacrowd.org). I'd go into more details but this says it all.

And This Is Chemo Brain. We’re Not Making It Up!       

By Lizzy on February 26, 2015

   

BY LIZZY SMITH

Just a week ago, someone ask me what chemo brain was like. Here’s an example. I’m in my car purchasing drinks for my daughters at the drive-thru at Beans & Brew. The barista tells me the total, I get the money out of my handbag and then I pick up my phone and start calling my best friend.
“Mom! You haven’t paid yet. Are you kidding?” my 14-year old daughter, Morgan, said.
I looked at her confused, then looked at my hand and there it was- the money. I forgot to pay.

Just minutes later, my nine-year old stops me as I’m driving home. “Mom, we are supposed to be going to the orthodontist!” Oh, yes, why am I driving home? We all laugh at crazy mom. Hahahaha.

There are conversations I’ve had with people that I don’t remember. I supposedly promise my children I’ll bring them lunch to school. I don’t remember that either. I put things on my phone calendar but I often forget to look at my calendar.

It’s not so awful that I can’t drive, travel, or enjoy life. But I’ve long stopped trying to hide the fact that I fish for names, can’t remember words, and show up for events on the wrong day. It’s just one more thing to blame on cancer. “Sorry, I have chemo brain!” I’m apt to say. And it’s not like I’m making it up. It’s true. It’s real. And it’s sometimes really annoying. Oh well, I’m alive!

But chemo brain isn’t simply forgetfulness. Heck, we all forget things, even if we don’t have cancer, dementia or Alzheimer’s. But it’s a fuzzy feeling that is often exacerbated by fatigue (thanks, myeloma and meds!). It’s not feeling sharp. When my daughter talks to me too fast and then someone else starts talking to me at the same time, I just can’t do it. I want to put my hands over my ears and scream “STOP!” I feel like 300 people are screaming at me at the same time. Sometimes even trying to remember things takes more energy than I have so I simply don’t. Some days (not all!), I have to really concentrate. Like my bedtime routine takes forever– take meds, put jammies on, wash face, put on lots of essential oils, turn on my electric heating pad, put my children to bed, read to my youngest child, brush teeth, get lunches ready in the morning… I finally made a list so that when chemo brain rages, I don’t have to “think,” I can just “do.” Just go down my trusty To Do list and give my cognitive thinking skills a rest.

So today when I stumble on an article in OncLive (Chemobrain—It’s Real, It’s Complex, and the Science Is Still Evolving), I am relieved. Just in case someone doubts me, I can send them a link and say I’m not making this up!

Apparently, chemo brain is most intense during treatment. However, since many of us myeloma survivors are in long-term treatment, we may not get the “benefit” of going back to baseline of how we were before illness.

But according to the study, some 30-percent of cancer patients also experience other emotional ailments associated with chemo brain, including depression, anxiety and distress during treatment. 30 to 60-percent also have insomnia, and poor concentration and memory.

No kidding! We cancer patients have been saying this all along. Now we have validation.
I found this example in the article very interesting:

In an early study exploring functional changes in the brain due to chemotherapy, [the researcher] asked twin, 60-year-old females, one of whom had been treated with chemotherapy, to perform a series of tasks while undergoing MRI. The resulting images documented areas of hyperactivity in the chemotherapy-treated twin relative to the untreated twin, which the authors interpreted as areas of deficits due to chemotherapy.Findings of several functional brain imaging studies have been reviewed and relative to “controls,” individuals treated with chemotherapy have been found to exhibit functional differences, including both areas of hyper- and hypoactivity during tasks, as well as differences in brain activity while the brain is at rest.In addition, structural differences have been noted as well. [Researchers] compared brain images of women with breast cancer, some of whom received chemotherapy and some did not, and found decreases in volume and density of both white and grey matter in the group treated with chemotherapy. Chemotherapy-related reductions in grey matter have also been correlated with impairment in cognitive abilities.

So what is someone with chemo brain to do? If you’re looking for a magic pill, it doesn’t exist. Exercise and socialization helps. For me, I write myself a lot of notes and try to do better with looking at my calendar many times a day. I tell people I have chemo brain and that’s why I forget stuff. And, well, I move forward in life, enjoy and make apologies when I mess up.
Here’s what the article says about help:

Healthcare professionals are urged to validate patient concerns, provide education, and to assess for contributing factors, including medications, depression, anxiety, pain, fatigue, substance abuse, and sleep disturbance. Although most patients eventually return to pretreatment baseline, a subset report significant impairment in quality of life, independence, and self-confidence. One of the most important things friends, family and caregivers can do is to provide emotional support by listening to the patient’s concerns and validating the existence of chemobrain. It is common for families, coworkers, and friends (and sometimes even healthcare professionals) to not understand that the emotional, physical, or cognitive effects of cancer treatment may linger after treatment has ended.

Neuropathy is one ANNOYING side effect from myeloma treatments! How to cope...

What Is Neuropathy And How To Live With It?        

By Lizzy Smith on www.myelomacrowd.org    

 

Peripheral neuropathy is a common side effect from the myeloma drug bortezomib, and is often one of the most debilitating. Symptoms are usually seen almost immediately when beginning treatment, sometimes within the first few cycles, or when a cumulative dose is reached. Because I have been on near continuous bortezomib therapy for the past three years, I struggle with neuropathy. I don’t have pain, but in my left foot, I have almost no feeling. I can feel pressure, but that’s about it. In my right foot, I have about fifty percent feeling. At night, the numbness can at times be uncomfortable. I also feel quite a bit of weakness in my left leg, which is quite a switch from my pre-myeloma body when I was a runner and had very strong legs.

So let’s talk about neuropathy, what is it, and what to do about it.

What is peripheral neuropathy?
Peripheral neuropathy is damage to nerves of the peripheral nervous system. It causes pain, numbness, tingling, burning, and weakness, typically in hands and feet. Additionally, motor skills can be affected with mild to severe weakness in the lower extremities.

For me, I can still do pretty much everything I want to, but I am aware that I am not as physically strong or as coordinated as I once was. Case in point– several months ago, I went on a power walk in my neighborhood. I simply don’t lift my feet up as much as I used to. It’s a subtle change in my walking gait and I don’t even think about it. But on this walk, I tripped over an uneven sidewalk and slammed my face into the pavement. I have a permanent bruise on my cheekbone. It wasn’t the end of the world and I don’t mind some wounds from getting out and doing fun things (it gives me a great story to tell and I appear less boring than I am!), but nonetheless, I need to be well aware of my limitations and be extra cautious. I often go snow skiing with my daughters but I am very careful, I go on easier runs than I used to, and I really avoid falling. My ski boots don’t feel that “great” on my feat but keeping them extra warm, wearing good cushioned socks, and staying hydrated helps immensely.

Some patients have such intense pain that nothing helps but pain killers and a walker. If you have these symptoms, talk with your doctor about your options for relief.

Is neuropathy permanent?
For those discontinuing bortezomib, neuropathy often resolves itself within three months, though it can take longer. Since I’m staying on the drug for the foreseeable future, I don’t anticipate mine going away any time soon. Instead, I need to learn to live with it.

What can be done to prevent neuropathy?
While there are no ways to stop neuropathy from happening, getting proper sleep, managing stress, eating healthy foods, staying hydrated, and exercising helps. For me, the worse thing I can do is be sedentary. Stimulating my feet helps a lot, as does getting around and moving. I never walk around barefoot, though, not even in the house. One day, I noticed my foot was bleeding. I had no idea how (or when) that happened. So always having something on my feet is really important. For example, I always have fuzzy socks or slippers on at home. Good cushioned shoes help, too, though I must admit that I live in flip-flops and sandals over the summer. As long as I’m not barefoot, my feet seem relatively happy. Last summer, I broke my rule when we were in Sirmione, Italy. The lake looked so beautiful and it was so hot outside that I had to get in. I took my sandals off and started walking on the beach. The tiny rocks felt like needles and I almost passed out from the pain. Thank goodness my daughter was nearby and she rushed my shoes back to me. I couldn’t get them on fast enough. Never again! I purchased some water shoes for our upcoming trip to the Honduras in Belize because even in the ocean, I need foot protection. It might not look as cute but who cares? Comfort first!

I also have my fiancé rub my feet and I love getting pedis simply because it helps stimulate my nerves. This helps diminish the intense numbness I experience, especially at night. I absolutely love peppermint essential oil for its nerve-stimulating effects (plus it smells dreamy). I put about a tablespoon of fractionated coconut oil in my palm, add maybe six drops of peppermint oil and rub it on my feet and calves. Oh my gosh, it is amazing.

I also have a “foot ball” that I usually use at night. The night numbness is so much more livable when I use this routine.

I am a huge fan of yoga. For me, it’s 90-minutes of Bikram yoga in a 105-degree temperature room. It is very stimulating for my entire body, numb feet and calves included. I walk, hike, ski and most everything else I like to do. True, not everyone can do this. For some, the pain is too intense and if this is you, make sure you discuss this with your doctor. Perhaps physical therapy is also an option.

Besides stopping bortezomib, are there other options?
I have read that the weekly administration of subcutaneous bortezomib, rather than the standard twice per week treatment schedules, helps with neuropathy’s frequency and neurotoxicity. Discuss with your doctor about perhaps reducing your dose if your side effects are too painful may be an option too.

What about medications for peripheral neuropathy?
There are topical gels that can help, though you’ll ne need a prescription for some. Topical menthol can also be effective. Pain killers can be used for intense pain. Additionally, there are prescription medications for managing the symptoms of neuropathy. Discuss them with your doctor.

My News Interview (side effects of Bortezomib/Velcade)

http://www.ivanhoe.com/contentclientvideo/MB_videozip/mb3858.mov

In September, I was interviewed for a news segment about my experiences with Velcade, or bortezomib. One of the side effects is low platelet counts, which I experienced pre transplant. Let me assure you that when you have low platelets, you feel like you're dying and you don't even care. My organs were getting ready to shut down. It is not a fun feeling and when you get infused with platelets, you feel like a new person. So anyway, here is the interview. I was battling a horrific stomach flu on the day of filming. I can't believe that I don't look pasty white. Anyway, enjoy!

Another scary Ambien story and traveling

So this morning I woke up and the TV in the living room was on, so were the lights. The silverware drawer was wide open, there were dishes on the countertop and a plate with four bagel bites that looked like someone had stuck their fingers into then decided not to eat them at all. I was totally baffled. The girls woke up to get ready for school and I asked them if either had woken up in the middle of the night to eat bagel bites. They looked at me like I was nuts. No, of course not. And, really, I don't see either one of them turning on the TV and having a food fest alone anyway. So there were two options left: 1) ghosts in the house; 2) it was me. I am convinced it was me, which is really disturbing. I don't even like bagel bites. I hate them actually. I only bought them for my daughters because about a month ago, I went to Kansas City for four days and wanted to leave easy snacks for my children while I was gone. And this had to be an Ambien sleep thing. I have no recollection of it at all. What else am I doing in the middle of the night that I don't remember? Oh my gosh. I once went shopping on Ambien. I woke up the next morning only to check my email inbox to discover that I spent some $400 on stuff I don't remember. But am I eating or... I can't even fathom what else. I talked to my nurses today and they will give me another sleep aid without the same side effects. I hate that I even take sleep aids but you try taking Dex and sleeping. It isn't possible!

Did I ever mention how much I love to travel and go places? Life is about experiencing new things and seeing as much as possible, whether it be in your backyard or a continent away. To that end, I went to Kansas City last month. It was a last minute thing and I had company (William). Kansas City is beautiful. Granted, we stayed in a very tony part of the city. But the downtown park, the mansions, restaurants and shopping were superb. I absolutely loved it. I ate way too much, that part was not good. But the rest? I thought Missouri and Kansas were simply fly-over states. If I had not gone to Kansas City, I'd still be thinking that and what a shame that would be.

On Thursday, my daughters and I are flying to Long Beach for a few days.

And in early December, I'm heading to San Francisco for the American Society of Hematologist's convention (ASH). I was admitted as a reporter and I'm so excited to go. It's a huge conference and I will learn a lot and be writing it, blogging it, and Tweeting like crazy. Three years ago, I went to this same convention but as an employee of a major company that had a large presence at the convention. And this time around, I am going as a patient and advocate. Weird how that works. I haven't been to San Francisco in eight years. William is coming with me and we are heading out a day early, staying with my college roomie Jen so we can visit, then checking into the hotel downtown the following day. It'll be a very busy but hopefully fun and rewarding five days.

We just booked a trip for Spring Break. It's a cruise to Honduras and Belize. Just weeks prior, I'll be in Fernandina Beach, Florida for the Myeloma Beach Party. And I am hoping that next summer I can somehow figure out how to live in Croatia. I really want to rent an apartment there for a month or three. Sigh-- a pipe dream? Perhaps, but I can wish and hope and dream some more, right?

And that's my Wednesday post. Cheers!

This is fatigue

I have yet another cold. I get them it seems every six weeks or so. They never progress beyond your typical cold (knock on wood) but they are annoying. But despite my cold, I had really good days on Sunday and Monday, the days I usually come off of Dex and are most fatigued. On Monday afternoon, William and I went for a long power walk (well, "long" for me, not for him) and I thought that despite my cold, I felt pretty dang good. Maybe I'd skip my fatigue days this week. And then Tuesday arrived. Yuck. I got the kids off to school and went back to bed for an hour, met up with my parents for breakfast, then went home and right back to bed. I woke up in time for the girls to come home and managed to get them to their activities, and by eight o'clock, I was asleep on the couch.

Wednesday was better but still a struggle. I went to Myeloma Jenny's and we worked on the www.myelomacrowd.org site and then we went to lunch at Koi where we met a third myeloma warrior, Heidi. Jenny met Heidi on Facebook and this was our first meeting with her. She lives about 20 minutes away from us and was diagnosed in December at age 51. She is being prepped for a stem cell transplant.

As I was driving to the restaurant, it dawned on me what fatigue is and the difference between fatigue and just being tired. With fatigue, it never matters how much sleep one gets, it doesn't help. I could sleep all day when I'm fatigued and it just won't matter, I'll still feel fatigued. It would be nice if I could just sleep it off but it doesn't work that wait. I just have to wait until my body isn't fatigued anymore. It kind of sucks.

Anyway, throughout lunch, I had to concentrate on everything that was being said. I got that odd sensation of somewhat floating. For me, it's now more "mind over matter." While I have that sensation, I know I'm not going to pass out so I just don't panic and get through it. When I first started getting that floating feeling, I wasn't so sure! But now that I'm a veteran, I know my body now! I went home and had to be horizontal for a bit. A few hours later, William and I went to a Death by Chocolate event (yum!) and to a movie. We saw Jack Ryan Phantom Recruit. Much of it was filmed in Moscow, which was a huge treat for me. I love that city! Anyway, my strange floating feeling went away almost entirely. Sometimes getting up and moving makes my fatigue and side effects almost disappear and such was the case last night.

Today it's a bit early to tell but I think my fatigue is mostly gone. After writing my Divorced Moms column, I'll go for a power walk and see how that goes. Usually my fatigue days don't last more than a day or two so let's hope it's gone until next week.

When I started treatment, my nurses told me that after transplant, I'd find out what my new normal is. For some, it's 80 percent, others, it's something else. I think for me, 80 percent sounds accurate. It's doable. I'm not working (thank goodness) and that helps. Really, I don't "have" to do anything. So if I'm having a bad day, while I might have a million things on my list, in reality, almost none of them are "musts." So I'm nice to myself. If I feel crappy, nothing gets done that isn't absolutely required. I look at some runners who look so energetic and strong and powerful. I used to run. I miss being able to do that. But that's ok. I am strong. I challenge someone in my shoes to do a lot better. Still, I miss that feeling of feeling healthy and strong. Sigh.

I'm still on maintenance medications. Maybe when I'm off of these meds, I'll feel more like the old me. That would be nice. If this is as good as it gets, well I'll be grateful for that. I'll be grateful for life.

My myeloma side effects and Obamacare

 

Typically, my most fatigue days are Sunday and Monday because those are the days that I'm coming off of the Dex that I take on Fridays. Last Monday, despite feeling incredibly fatigued, I went to yoga. I had to sit through probably half of the standing yoga poses. I thought I was going to pass out. Everything turned dark and my head started spinning. So I got comfy on my mat and meditated until we got to the floor poses.

But I never know about fatigue. Sometimes I get fatigue on other days, and sometimes I don't get fatigue at all. And that's what is frustrating about managing side effects. I just don't know what my side effects will be or when I'll get them. Case in point...

I caught another winter cold. I think my immune system is doing quite well, especially considering that I take immune-suppressing drugs every day. That said, I get one cold after the next. For the most part, my immune system kicks in and it's just a cold. And that's what this one is.

But despite the fact that I have a cold, this past Sunday, I felt terrific. And Monday morning was a great day, too. So I went to yoga and it felt great. No dizziness or anything. I did every pose (though my balance was way off). Go figure. I would have thought I'd feel horrible Sunday, Monday and today but not at all. I'm coughing and sneezing and congested, but all else is great.

...Except, I was sitting at a stoplight and my heart started pounding. It felt like a huge panic attack except I had no panic. It was bizarre. It went away after a few seconds.

I have to say, it is really strange when you realize that your body can, and will, fail you. Usually (hopefully) most of us will experience that when we get older. I experienced this much younger than I would have liked. It is scary and sad and, well, I feel so not in control. It's all in God's hands. All I can do is live today as if this is all I've got.

I am now using my Obamacare health insurance. I'll blog about that very soon. I am happy with it, I think, but there is so much to discuss about healthcare. I called the Mia Love for Congress campaign office and they promised to get me a one-on-one with Mia Love herself soon. I want to talk to her about a whole host of things and share with her my story. I can't wait to hear what she has to say and to have a very robust dialog with her. She will almost certainly win a seat in Congress and I'm a fan. Strong women are my heroes.