Post Chemo Cognitive Dysfunction

"Post Chemo Cognitive Dysfunction"

I heard these words today, and I am floored by how life-changing they are. To have a name for something I have felt for the last 8 years of my life is so validating.  I have been suffering in silence by something that is hard to even put into words, and to have someone tell me that there is hope that I don’t have to feel this way anymore, and that I’m not crazy, is beyond relief. 

I went through a full hysterectomy and chemotherapy for stage 3 uterine cancer in 2010, when I was 40 years old.  It was my impression that I would get through that, and that I could just get back to life as normal.  I had 3 small children, and my focus needed to be on raising them.  I sailed through all of my treatments with a winning attitude; I knew deep down to my tippy toes that I was going to be OK, and I’ve been given a clean bill of health ever since.  

While going through my chemo, I experienced all of the side effects you might expect – hair loss, insomnia, bone pain, neuropathy, and the dreaded “chemo brain”.  Before chemo, I could tell you every phone number stored in my phone – so silly that I had to put them in there, my mind was so sharp and numbers-oriented!  I never had to keep a calendar – I could keep track of schedules for all 5 members of our family.  I knew who needed to be where and what time – no problem!

Then “chemo brain” hit - I remember going to the grocery store because I needed 3 things – and I remember standing in the middle of the produce section astounded that I couldn’t remember even one of them.  I remember not being able to apply for a Target Red Card, because I couldn’t remember the last 4 of my Social Security number.  I remember being in the drive thru, and having trouble counting out change, and realizing that the cashier was getting frustrated with how long I was taking.  I honestly thought that once I finished chemo, all of my sharpness and mental clarity would come back, and that this would be a distant blip in my history.

After being out of chemo for one year, I remember asking my oncologist about still feeling a little fuzzy.  The worst parts of chemo brain were gone, but there was still the nagging feeling that I hadn’t really returned to normal.  Nothing that I could really put my finger on; I just knew I didn’t feel quite “right”.  He told me that really, once you’re done with chemo, the side effects will go away. Don’t get me wrong – I LOVE my oncologist!  I still go see him annually to this day.  At my 5 year benchmark, he told me I could return to my old gynecologist if I wanted, and I told him, “You’re not getting rid of me that easily!  You’re stuck with me!”   I found it interesting, though, that at that 5 year checkup, when I brought up the issue of long term side effects from chemo, his response was very different.  He said, “We simply don’t know what all of the long term side effects are.”  What a shift in thought, and so very true. Chemo is the best shot we have right now for treating cancer, but we really have not had long enough to figure out what happens in the long run.  

After the first time I asked about it, I searched the internet for Post Chemo Brain Fog.  It was hard to get any information, but I did find a few forums where other people were talking about feeling this way, so at least I knew I wasn’t alone, or imagining how I was feeling.

A lot has happened in the last 8 years – we returned to regular life, running after the kids, and making sure everyone was focused on school and got to all of their activities.  The whole time I have mourned the person I was before, constantly questioning myself – why don’t I feel motivated to do anything?  Why can’t I get my house organized?  Why do I always feel like I have so much to do, but I couldn’t tell you what it is?  Why do I lay in bed at night, kicking myself for all of the specific things I could have gotten done that day, but couldn’t think of earlier?  WHY CAN’T I JUST GET IT TOGETHER?!  It has taken a toll on my self-esteem in ways I couldn’t have imagined. This has all been going on as an inner dialogue for 8 years!  When people I know read this, I think they may be shocked to know that this is how I have been feeling for so long.  I put on a really good game face.

After battling mental health issues with one of my kids, and seeing her struggle to focus with her finally-diagnosed ADD, I started thinking about how much our symptoms seemed similar.  My gut started telling me that maybe if I could just take some ADD medication, maybe my brain might start to feel clearer.  However, my day-to-day need to manage my family and what they needed, made me push that aside for a long time.  Recently, my other daughter was diagnosed with MS.  I finally realized that if I really want to take care of my family, I need to take care of myself first.  While at a visit with her nuerologist, I asked him, “On a side note – have you ever heard of post chemo patients having long term side effects similar to ADD?” He said, “Absolutely! But you need to start with your Primary Care doctor.”  What a relief that someone didn’t look at me like I was crazy!  So… off I went to my doctor, who ordered a bunch of bloodwork and a bone density scan to make sure that the things I was feeling couldn’t be attributed to something organic – like Thyroid or an effect of lack of hormones due to being thrown into menopause by my hysterectomy years ago.  The type of cancer I had is fed by estrogen, so there was no treatment available to help relieve the menopause.  In fact, another reason why I delayed getting help for so long was that many of my girlfriends said that they felt like they weren’t as sharp anymore.  I don’t have a way to compare my experience directly with theirs, so I brushed my symptoms aside, thinking that it must just be what everyone else is feeling.

All of my current bloodwork and tests came back with flying colors – healthy as a horse!  So…  I still made an appointment to follow up with my doctor.  I went in prepared for him to tell me – “Your numbers are all good – there’s nothing wrong.” To which I was going to say, “If you don’t feel prepared to help me, let me know, and I can find someone who will”.  (I always have these great conversations in my head before I even go in and hear what they’re going to say! Haha)  So he said my tests look good.  I told him that I have lost 10 pounds in the last month, have started walking, and have tried cutting sugar out of my diet – all things that I know are supposed to help your brain function, but that I haven’t felt a difference. That is when he dropped the bombshell of the day!  There is an actual condition – Post Chemo Cognitive Dysfunction.  The fact that it actually has a name feels like such a godsend to me!  No more random forums on the internet, with people commiserating together while their doctors can’t give them answers.  It is real, and there is something I can do to try to help it.  I have actually cried while writing this, because I can’t believe that there is hope for feeling better.

I have a very optimistic view on life – everything happens for a reason. Even when bad things happen, it must be a lesson my soul needs to learn in this life.  Also, I absolutely believe that every challenge I have faced in my life (which usually have come at an earlier age than my peers), prepares me to help others through their difficult times.  That is also why I believe in sharing my story.  I find that it makes you feel less alone in your struggle, and it opens up the opportunity for people to come into your path, whether you are meant to help them or they are meant to help you.  I hope that someone else might read this and not feel so alone, or maybe a health care provider might read this, and recognize a huge need in the cancer, or even more widespread, medical community. 

Please, please, please!  Learn to trust your gut!  You know your body better than anyone, even doctors.  If you have a nagging feeling, trust it and follow up on it.  If you don’t feel right about the answer that one doctor gives you, move on to another.  Everyone has different opinions and are good at different things.  Trust yourself and you won’t go wrong.

A Sunny Winter's Day

It's been a while since I posted, and most of it has been due to the holidays, which were great, by the way. I have discovered the benefits of acupuncture for my chemo side effects, and I have had a lot of relief from nausea and some of the other short-term side effects, like insomnia and fatigue. My last 2 chemos were delayed due to low white blood cell and platelet counts, and my current one was delayed until next week again for the same reason. At this point, I've had 4 cycles, with only 2 more to go, and I am definitely feeling like a horse racing for the stables. I have so many exciting things to look forward to this year - I'm going to Italy in May, and I am planning to open a new business. At this point, chemo has become an annoyance and I can't wait until it's over so I can move on.

This week, I feel like some of the effects of the chemo are hitting me a little harder, and I think it's due to the "building-up" effect that chemo has. Although I always have muscle pain and weakness in the week following a treatment, it usually goes away, and I feel pretty strong the second 2 weeks of my cycle. Although it has been 3 weeks since my last treatment, I am starting to feel a little weaker - getting winded going up the stairs, and feeling like I've walked about 10 flights as opposed to one. Today, I took a walk around my backyard. I noticed all the plants with their bare leaves, and the weeds that have grown up in some of the planters, and I was overcome with the feeling that my body is in a temporary "winter", stripped bare and weak. Although that might sound a little down and depressing, today is, after all, a sunny winter day. Even though my body feels a little down in the dumps right now, and I can't wait to start my walks in the park, or try going to yoga, my spirits are great - I am confident and positive. I see the beauty in everything around me, and I am grateful for this experience. I believe that the level of pain you experience in your life allows you to experience the same level of pleasure and happiness, kind of like a pendulum swinging back and forth. If nothing bad ever happened, you wouldn't be able to appreciate the good. And while we are in the depths of winter, even on a sunny day, what is the one thing we all look forward to? Spring. I can't wait for my Spring to come! Everybody better look out!

My Overdue November Update

It's been awhile since I've written, so I thought I would post a little update as to how things are going. I'd love to write some profound piece of wisdom, but for right now, a little update will have to do.

The first major thing that happened since my last post was losing my hair. It came fast and furious, and even though I knew it was going to happen, it was a bit of a shock. I finally got so sick of finding hair everywhere, I bit the bullet and shaved my head. My hubby was ready to do it right away, but I had to get mentally ready for it. Ladies, it's like being pregnant. The idea of childbirth scares you until your body is so uncomfortable, you don't care how that baby comes out or who sees it. One day, my mind shifted so that I was ready to do it, and off the rest came!

Having no hormones and no hair brings challenges that I can only compare to what I've heard about flying a helicopter. When flying a helicopter, you have to coordinate your hands and feet so that you can steer the helicopter, keep it at a steady altitude, and keep it from spinning. Everything is in a very fine balance, and if one of those controls is off, it can throw you into a tailspin. That is how I can explain the sensation of having no hormones and a bald head. It's like a constant battle to keep from being hot and cold. A hot flash hits, and the zip-up sweatshirt comes off, along with my cap. Then my head gets freezing, and I have to try to balance out the temperature without throwing myself into another hot flash. It's pretty comical to sit on the couch with me. I have to adjust about every 5 minutes!

The second (and best) thing that happened since my last post, was the cruise the hubby and I got to take in mid-November. We had the cruise planned since last March, so when the news came that I would be going through chemo this fall, my only question was, "Can we still go on the cruise?" My wonderful chemo nurse planned my entire chemo around the cruise, so it would come when I would be feeling the strongest in my chemo cycle. We flew to Miami and partied in Key West before boarding the ship for a week through the Eastern Caribbean. It's the longest we have ever been away from the kids, and it was a much-needed break from everything we've been going through. We partied in the casino every night, we visited some amazing places, and met some new, amazing friends. Susie and Vicki - meeting you girls was one of the highlights of the trip!

Once we got back from the trip, my 3rd chemo was held up as my white blood cell count was too low to go ahead with chemo. (Hmmm.... could it be all the fun on the cruise?) The delay in chemo let me have a great Thanksgiving with family and friends, and the week off allowed my body to recover enough to go ahead with my 3rd chemo this last Monday. 3 down means I'm halfway done! Yahoo!

Thanks everyone for all your well wishes. I definitely feel all the love coming my way, and I am grateful for all of it.

The Meaning of a Wig

I went wig shopping yesterday. I haven't lost my hair yet, but it's starting to get a little thin, and "they" say that you should get one while you still have hair. My 8-year-old said I needed to get one in my regular color, so that everyone would still know that they are my kids, and that she wanted to come along. My 5-year-old is excited about me losing my hair and getting the wig, and she has even started drawing family pictures informing me that I have a wig on in her picture. I decided that it would be fun to make it a group effort, so I asked all the women in my family to come along. There were a couple who couldn't make it, but we ended up with a good turnout for a girl's day out of shopping and, of course, lunch.

I have to admit that I was glad to have these women with me as I walked into the store. As I opened the door, I momentarily got a little twinge in my tummy. I like to look good, but I would not say I'm super vain. I don't buy the most expensive creams, I am ok running to the store without makeup, and at this point, I can't justify getting botox or anything else done. Not that I don't need it - just that I am ok with how I look, and I don't feel the need to hang on to a younger version of myself. I may feel differently in a couple of years - but for now I'm ok. (Wait - if I had the money, I would definitely spring for laser rejuvenation - I want to get rid of those sun spots!) Anyway, part of vanity is hair, and I must say that I have never had a great love affair with my hair. I have gone into the wig experience with the attitude that it will be fun to try new styles and colors, and joked to my hubby that on our cruise next month, everyone will think he's coming to dinner with a new girl each night. All that being said, your hair is a very integral part of being a woman, and even for someone who's not extremely vain, the thought of losing it is a little daunting. It's part of what makes you feel sexy, or womanly, and when you think about the whole process of losing it, falling out in clumps, it's not very enticing. Anyway... back to the shopping! As I got the twinge in my tummy, I was so glad that I had all that backup walking in the door behind me, and the feeling quickly faded. We had a great time trying on all different colors and styles, texting pics to the hubby, and I found two, very different, that I liked and took home.

After I got home last night, the enormity of the day hit me, and I was surprised at how emotional I was. What hit me was not the actual losing the hair and getting the wigs. What hit me was how eternally thankful I am for the women in my life who went with me. I have some great girlfriends who are helping me through, and I'm sure I'll blog about them another time, but today is about my family. I had my two daughters, a sister-in-law and cousin who are like real sisters to me since I don't have any, a woman I got through marriage who has become my family, and my aunt, who has always been a second mother to me. As I sat thinking about the day, I thought about what each of these women has done for me since I have started going through all this. One has been praying for me everyday, and bought me the HOTTEST new yoga jacket right after my surgery. We all know how that lifts spirits! One gave up her anniversary at the last minute to watch my kids for the weekend when I had to arrange surgery in four days, and has continued to watch them and get them to school when I have to leave for chemo super early in the morning. Another has come into my house as a Merry Maid force of nature and has gotten my house in order better than I could. Now she has unleashed herself on an unfinished kid bedroom, and I know that within a week it will look like a magazine. Finally, one has continued to be the second mom she's been since she bought me my first baby doll when I was little. She has done my laundry, watched my kids, driven to hockey, and yesterday, she bought me my wigs. It's not the monetary significance of it that made it so moving for me. The wigs are a very intimate thing, and her generosity was a way of taking care of me, just like my mom would have done if she were here. For years, I would have just walked into that store alone, not wanting to bother or burden anyone else, and I'm glad that this cancer is changing me in that way. All of these women have made me feel taken care of, and after years of taking care of everyone else, it is a very welcome feeling. Thank you, ladies, for being my backup when I need it most. I love you all!

Who Let the Truck In, or Welcome to Chemo

I had my first chemo treatment exactly one week ago. When I have chemo, I get to go sit in a fairly comfortable room for 5 hours hooked up to an IV and watch reruns on TV. Not so bad - I brought magazines, my Nintendo DS, and the hubby. All in all, not a bad experience. A little boring, got to take a nap, and then came home. What I really was anticipating thereafter was a couple of days of downtime, maybe tired, maybe nauseous, and then back to my normal self.

I woke up the next morning feeling a little achy, so I walked a couple of small laps around our neighborhood park to loosen up, went to Starbucks with the hubby, and informed my family via text that this chemo thing was not so bad.

Somehow, that night, the chemo truck made it's way up to my second-story bedroom and proceeded to run me over. A few times. It didn't just run me over and go on it's way. It ran me over, threw it in reverse, and ran me over again. Since then, I have had bone pains and muscle aches mainly, only slight nausea (thank goodness), and completely no energy. I joked to the hubby that I didn't feel sick until they were trying to make me better!

I am discovering that I am going to have to adjust to a new "normal" for awhile. I need to let the very willing, loving people in my life take care of me for a change, at least temporarily. And it's kind of a nice change. After taking care of everyone else for so long, it's nice to be taken care of. More moms should have this luxury (minus the chemo). My energy will come back, and then, watch out! I am counting my blessings everyday - more on that next time.

I Have Cancer

Those are pretty shocking words to hear, let alone say. If you are a friend and have not heard, yes, I have cancer. There are so many things floating around in my head about the experiences I have had in the last 5 weeks, that I will have plenty of blogging material. I think that for now, I'll give the low-down on my cancer and where we are at with it, and save the emotions, spirituality, and life lessons for future blogs.

In late August, I had surgery to remove some uterine polyps. I had a very easy recovery, but when I went for my follow up visit a week later, my doctor dropped the Cancer Bomb. I must say how lucky I consider myself. First, for having a doctor who listened to me and told me that what was going on with me was not normal. Second, that he still did an ultrasound after the biopsy of my uterus came back normal. Third, that he decided to do a D&C along with getting rid of the polyps. That is where they found the cancer. As I sat in the exam room waiting for my dr. at my follow up, I thought, "why am I even here?" "I'm doing great!" All of a sudden, it occurred to me that I was going to get my pathology report, and something in my gut just knew that he was going to say cancer. He told me that I had endometrial (uterine) cancer, that I would need a hysterectomy, and he was referring me to a dr. at UCI who specialized in this.

On Tue., Sep. 14, the hubby and I went to see my specialist at UCI - a gynecological oncologist. Is that a mouthful, or what? We talked about the cancer and my need for a hysterectomy. Then "wham, bam, thank you ma'am", I was in surgery 4 days later. A really cool robot did a complete hysterectomy on me laparoscopically. So... now I am 2 weeks post-op, and I am getting ready to start 6 rounds of chemo on Monday.

My prognosis is very good. Even though the cancer had microscopically metastasized onto my cervix and an ovary, making me technically Stage 3, those came out in the hysterectomy. Also good news was that of the 30 lymph nodes they took out, every one came back clear. My chemo is now the "just in case" kind. I will lose my hair, and I may move a little slower than I'm used to for a while, but I believe down to my toes that I will be ok. I feel eternally grateful to have a dr. that my hubby and I feel comfortable with and trust completely. I'm also thankful for my hubby, who has taken on the roles of mom, dad, cook, cleaner, laundress, and carpooler, in addition to all of his regular duties. I love him with all my heart and could never get through this without him. I am everyone else's "rock", and he is mine. I'm thankful to all the friends who brought us dinner over the last couple of weeks. I'm thankful to my girlfriends (that includes my family girlfriends) who have cheered me up, watched my kids, cleaned my house, and just been there to make me laugh.

When the chips are down is when you find out who your true friends are, and I have found out that I am truly rich in that department. I will keep blogging to keep everyone updated. I'm going to start my chemo next week, so I'll let you know how that goes! Take care!

Mom Knows Best

My mom always said I should be a writer. She said it to me countless times during high school and college. I'd always roll my eyes, but I admit I was secretly flattered. As I am writing this, I just realized that the last thing I actually sat down and wrote, besides elementary school projects, was her eulogy 9 years ago. She died very suddenly of a brain hemorrhage, and we were all shocked and heartbroken. I was a new mom, and since I always looked for the silver lining, I felt blessed that she had at least been with me to get me through my first year of motherhood. Anyway, I very carefully crafted her eulogy, as it was monumentally important to me that I express everything I felt for her, and it was a way of giving a final thanks to her for everything she had given to me. The church we booked was so full that people had to stand out front on the lawn and listen to the service piped through the loudspeaker. It was overwhelming to me how many peoples' lives she touched.

Like I said, it's been 9 years that she's been gone. Now I have 3 kids and just hit the big 4-0 last year. My youngest is getting ready to start kindergarden, so now I have been feeling the angst of "what I am supposed to do now?" I am a stay at home mom, and want to continue to be, as it's important to me to be home with my kids if I can.


My mom seemed to be right about almost everything, especially about those very basic and most important things. She knew which friends and boyfriends weren't good for me. Countless times, she told me, "He's gonna break your heart." She was always right! When she met my husband, even though on the surface I didn't think they would really mesh, she said she felt like she'd known him forever. That's a pretty rousing endorsement, in my book. So... maybe she was right about the writing thing. I guess I'll never know unless I try, so here we go.