Chemo Brain

Facebook Post from December 7, 2010 at 9:19am
“chemo brain moment #416....I ordered 125 Christmas cards that DO NOT have our last name on them! Too late to change....hopefully our picture and first names will be enough! What an idiot!”

Ok. Let’s be honest. I suffered from some serious chemo brain during my treatment (and some might argue it still continues today :). I had heard about it before treatment started, but I kind of dismissed it. Maybe only aging people get chemo brain. Nope. I got it, and I got it pretty bad.

Before cancer, I prided myself on my ability to multi-task, to talk fast, and be efficient and precise in all that I did. Some call it Type A personality, some say anal retentive. Whatever it was, it was me. To a fault. I also had mass amounts of useless information stored in my head, which I guess just takes up space and makes you good at Trivial Pursuit and answering random questions that no one should really know the answer to. (I still know all the lyrics to Vanilla Ice’s famed “Ice Ice Baby”, but I can’t memorize a single scripture. Super helpful, right?).

Then along came chemo, and a permanent fog took over my brain for several months. I don’t remember when I first noticed it, but there it was, and I was doomed. Out with the multi-tasking, information central. I was now a chemo vegetable.

I am always on time. Early if possible. Chemo made me operate in slow motion, and I started running late. Not super late, but late just the same. Mornings were hard getting the kids out the door, and while we never missed the bus, we cut it close pretty often. So not like me!

One Saturday, I got Ryan to the soccer field at 10:30am, thinking we were 30 minutes early for his 11am game. WRONG! I mixed up the times and we were an hour late for his 10am game – he missed his warm up and half of the game. I was devastated and burst into tears. I felt like a terrible mom. I have never done that, and hated that I was the reason he was late and missed most of his game. Ryan, however, was unfazed but it all and was just happy to play soccer. Parents always make a bigger deal out of things, don’t we?

I found myself tongue tied very often. Those of you who know me know I am never at a loss for words. I always have lots to say (obviously!) But I felt like my mouth could not keep up with my head, and I would jumble my words up, almost like a stutter. I also found myself searching for words to complete a sentence that I would normally know. It was different than not being able to remember some obscure name or fact; this was not remembering things I should have known. It was beyond frustrating.

I struggled with forming sentences correctly, and writing emails became a challenge. During my treatment, I remained on the board at Norah’s pre-school as the class Vice President. Along with making the monthly volunteer calendar, I would send out emails to the parents periodically to make announcements, ask for supplies for parties, etc. I remember sitting down to type an email for a simple announcement, and it took me forever to form the sentences. It was as if my brain was in molasses and I just couldn’t get it to work.

My patience also took a beating. Frankly, I no longer had any. Cancer allows you the rare opportunity to take a step back and really simplify. I embraced the things that were important and the rest just didn’t matter any more. It was easy for me – my diagnosis shined a light on what really mattered. The hard part was that I sort of expected that everyone I came into contact with had embraced the same philosophy. So I was constantly disappointed when people would freak out or get upset over something super trivial. I just didn’t care, and it made me a not-so-nice person for a while. I just did not have patience for trivial, superficial matters.

Multi-tasking had become a thing of the past as well. Cooking, something I usually enjoyed and could do fairly well, became a real challenge. My poor family was forced to often eat burnt, overcooked and rubbery foods, all because I could no longer do too many things at once. Good thing for all those Let’s Dish! freezer meals and my fabulous friends who brought in hoards of food, or we would have had to resort to Michael’s version of cooking: take-out.

We had Stella’s 7th birthday party at an ice rink, and while I was prepared for the party and made cute invites and goodie bags and all that stuff, I struggled at the party to do more than one thing at a time. The normal Jenna would flit around, doing ten things at once. But I found myself in slow motion without the ability to multi-task at all. Fortunately Michael was there to pick up the slack, along with some kind parents who pitched in and helped to make up for my turtle-like brain.

Having a conversation with me was also super fun. Fully engrossed in a discussion, I would stop mid sentence and then ask, “what was I talking about?” It’s not like it was a one time thing - it happened all the time. I wasn’t getting distracted and losing my train of thought. I would completely forget what I was saying. I doubt I was on anyone’s list of people to have a meaningful conversation with during this time.

I noticed that my ability to make a decision was also compromised. I found myself second guessing EVERYTHING. I could not be decisive about anything – I needed the advice of Michael or anyone who was willing to listen and share their point of view. I guess all of the symptoms I was experiencing caused me to really doubt my abilities. Normally a pretty confident person, I struggled with simple, everyday decisions. The Christmas cards I referred to in the facebook post above took me forever to decide on. What card to choose? What font to write it in? What picture to put in? I went back and forth on everything. And in the end, I forgot to include our name on them!

Despite all this, I really didn’t get too worked up about my chemo brain problems. Of course I had my moments of frustration and annoyance, but there were bigger things to worry about. Perhaps it was a blessing in disguise. Or maybe I just forgot to be upset.


The Wig and I

I had a love/hate relationship with my wig. I was unsure about whether I really wanted a wig in the first place, but decided it would be smart to have one so I had options for covering my baldy noggin. When I put it on for the first time, I didn’t feel like myself. It made me self-conscious, like it was screaming “I have fake hair! I have fake hair!” The part was on the wrong side from how I used to style my hair (I guess I was supposed to be able to switch the part to the other side, but I could never get it to work). The color was great, and the cut was fine, but I was not used to having bangs, and although they were minimal, they took some getting used to. Remember, I was plain-jane hairstyle girl, and it was all an adjustment for me. I got plenty of compliments on the wig, and few people could tell it wasn’t my real hair. That was a good thing. But it was still so strange to have this head of hair that was not my own.

Once I got used to it, however, I began to wear it all the time. There were many reasons for this. When my hot flashes started, I noticed that my wig allowed my head to breathe when I was sweating up a storm, while hats seemed to trap all the heat in, making me feel even hotter. While in public, a wig came in handy – the hot flash could come and go, and it wasn’t noticeable to anyone but me. But if I wore a hat, I would start to sweat and it would often drip down my neck or face. Lovely image right? Menopause is so hot.

My kids were another big reason I wore my wig so much. They seemed fine with my baldy head around the house – they would stare a bit sometimes, and often say “Mom. You’re bald.” “Yes, I know” was always my answer. But it was very important to them that I blend in when we were out in public. They wanted normal as much as I did. If I was getting ready for the day, they would ask “You’re going to wear your wig, right?” If I was coming in to their school for anything , they would always request that I wear my wig and not a just a hat. Having hair meant that I wouldn’t stand out. I don’t think they were ashamed I had cancer, but it was embarrassing for them to have people see their mom as bald. They were kids, after all.

When the wig needed to be washed, I would let it soak in the sink in the kids' bathroom, and then leave it out to dry on the counter. It looked kind of scary sitting there, like a furry dead thing all knotted up. If I forgot to pick it up, I would get some pretty funny reactions from my family. My favorite was throwing it at Ryan when he came to see me in my room. He would scream and run away - it always made me laugh. Michael named the wig "The Ferret" and I think we got every person in the house to try it on at some point during my treatment. Photographic evidence would be nice, but I never seemed to have a camera handy for those moments.

I don’t know if I ever got used to the fact that I didn’t have hair. I was completely bald for almost 8 months, and I still washed my head with shampoo in the shower every day even though there wasn’t any hair to wash. Looking in the mirror each morning was an obvious reminder, but I don’t know that it ever really sunk in. It was surreal, and I don’t know that I will ever be able to explain it. It is funny how something as simple as hair can mean so much to a person battling this disease.

In the end, my wig made me feel less sick, less obvious in a crowd. At home, I was all about the hats. But in public, I had to answer less questions and got less stares as I went about my business. I didn’t love it, but I was willing to wear it to help me feel like the person I was before I had cancer.

Photographs by Katie Ash Photography


Chemo - Round Four

I am convinced that having chemo during the Halloween-Thanksgiving-Christmas time frame helped me keep my sanity. I loved that there was something to look forward to each month. It helped to keep things feeling normal in my house, although few things were normal at all. Even though I had cancer, I wanted my kid’s lives to go on as though nothing were out of the ordinary.

It was important to me that we keep all of our holiday traditions, just like any other year. On Halloween, the kids still dressed up, we still put the spider web in our front tree, and we still handed out candy. I even made our traditional broccoli cheddar soup for Halloween night.

Thanksgiving was spent doing what we always do – cooking and spending the day with great friends. I cooked a turkey, stuffing, cheesy potatoes, green bean casserole, homemade cranberry sauce, and a few pies. A bit overboard, I know, but I LOVE Thanksgiving and I was so thankful to have the holiday fall during one of my good weeks. And on this Thanksgiving, I had something extra special to be grateful for – my Mom was coming to visit! Let me just tell you, there is nothing, and I mean NOTHING, like having your Mom around when you feel crummy. It just makes everything better. I love my Mom!

My mom arrived the Friday after Thanksgiving, and we spent the weekend doing my usual “prepare for chemo” things. And because Christmas was coming up, we decided to get the house decorated for the holiday. We pulled all the decorations out of the attic and got to work getting everything set up. No one does Christmas like my Mother, and it was so nice to have her help. By the time she was finished, there wasn’t a surface that was left untouched. She even strung popcorn to put on the tree! I joked that it looked like Santa had thrown up on my house - it looked that Christmas-y! I loved knowing that when I was feeling yucky over the next few weeks, I wouldn’t have to worry about getting my house ready for the holidays.

Facebook Post from November 29, 2010 at 7:21am
“So thankful today for the love and support of great family and friends. Round #4 of the poison pumping is today. NOT looking forward to it, but the bright side is that after this treatment, I only have TWO more! WOOOHOOO!!!! There's nothing like walking into the office feeling great and then leaving feeling like poop for a week. But it works, so we'll keep on keepin' on! Happy Monday :) xoxoxo”

Round four was on Monday, November 29, 2010. Again, I knew what was coming, so nothing really surprised me. It was nice to have my Mom there so she could see how everything worked firsthand. After another REALLY late start, we got the poison going. (I was used to the long delays in the waiting room prior to my infusion appointments; my Mom was not. She was so annoyed! Those days it seemed as if my whole life was spent in a waiting room. I had given up on being frustrated.)

This time in the infusion center I wasn’t the only person under the age of 60. In fact, in my little corner of the room, there were 3 of us who were young moms, all of us under 40. The two women both had ovarian cancer, and I talked a bit with the woman directly across from me. Things were not going well for her, and I listened as she told me of the complications she had endured in the last few months. The other woman was there for her first infusion. You could see the fear in her face; I’m sure my face looked the same on my first visit, too. I had met her for the first time a month before in the waiting room. She had two small children, and was facing a tough road ahead. She had cut her hair really short in anticipation of it falling out. Her first round of chemo did not go well.

I remember feeling guilty after meeting these two incredibly brave women. Guilt that I had been diagnosed with breast cancer. The cancer they can find relatively easily. The cancer that they know how to treat. The cancer that you can survive if you find it early enough. The cancer that gets all the attention. I knew I was going to come out of this ok. Yes, I was going to be just as miserable as them undergoing treatment. But I had the kind of cancer that most women can fight and win. I knew their fate was not as certain. And that day I felt guilt that my cancer was easier than theirs.

The smell of the chemo drugs had become more than I could handle during this round. I started covering my nose during the Adriamycin – I could smell it go in my port, and it just made me nauseated. I knew that smell all too well – I would be smelling it in my urine and feces and on my body for the next several days, chemo’s lovely little parting gift. I had a hard time drinking anything cold during that drug as well – nothing sounded good at all. But I did the best I could, and sometimes it would just be ice that I sucked on.

Michael came and brought Panera for lunch, and my Mom left to fill a prescription so we could have lunch together (remember, only one guest at a time). We were home before the kids returned from school, and I just waited for the misery to start.

Just like before, the symptoms were much the same. The neuropathy continued, but it began hurting so badly that it helped to have someone push on my thumb nail now and again to make the pain subside. The ill feelings chemo brings to your body are still hard for me to explain. It is unlike anything else I have experienced, and you just take it hour by hour.

I was having such a hard time finding something to drink to keep me hydrated and help flush the poison out. Over the past few treatments I had tried juice boxes, cranberry juice and ginger ale. But it was more and more difficult to stomach anything that was sweet. And water tasted horrible. My Mom found some sparkling water with lime essence, and some with orange essence. It made drinking so much easier, and I liked the little bit of flavor in the water. Mom saves the day!

My Mom also felt strongly that I should try to get up out of bed and at least come down stairs and sit up on the couch for a while each day. She said she thought getting up and moving around would make me feel better and help me to bounce back faster. Even though it was hard on me, she was right. See, you should listen to your parents!

Over the time she was here, my Mom baked her traditional sugar Christmas cookies and froze them, ready for my kids to frost on Christmas Eve. She baked nearly 40 loaves of banana bread, ready for me to give out as Christmas gifts (it’s tradition!), and put those in the freezer as well. She had meals frozen and ready for us to eat and she helped me wrap all my Christmas presents. Having her here helped me to ensure that Christmas for my kids would be just like any other. Well, almost. This time, their Mom would be bald.

Facebook Post from December 7, 2010 at 6:25am
“After almost 2 weeks here, my Mom just left :( ....but she got the first picture taken with my baldy head. I know you have all been curious.... so here you go! Don't worry, Baltimore, I will continue to keep this noggin covered up when I am in public! Dinner time and hot flashes at home...now that's another story. No guarantees around the house :)”


Chemo - Round Three

Facebook Post from November 8, 2010 at 6:23am
“Rise and shine!!!! Up early getting ready for the poison - Round Three is today. Guess what that means? We are HALF WAY DONE with this junk, people!! WOOHOO!!! January 10 will be just around the corner (last treatment), And today I am lucky enough to have great company, all the way from CA - my wonderful Dad, Bob, is here to be with me. Love it!”

Round three was on Monday, November 8, 2010. My step-dad Bob had taken a week off of work to come out to help and to go to chemo with me. Michael was out of town for work and would miss my treatment day - it was the perfect opportunity to get some TLC from one of my favorite people! The kids were also excited to have Grandpa at our house for a whole week. We even took in a Ravens game before the impending doom set in.

I felt like it was very important for my family to see me before the round of chemo took its toll - to see me up and about, happy, and functioning normally. I wanted them to know that despite the rough weeks after chemo, I wasn’t always that sick. I thought that if they had only seen me at my worst, it would make the fact that we were so far away that much more difficult to handle. I can imagine it was painful for them to watch me go from happy and involved to miserable and withdrawn. But to me, it made a difference that everyone knew it wasn’t always that way. There was joy in my life, despite the misery my body was experiencing. I NEEDED my family to know that.

The treatment went like all the others – nothing out of the ordinary, which is always good. Bob and I had lunch from the cafeteria, and we sat and talked and reminisced while the poison pumped on. We even had smoothies from Smoothie King again, although I have to say it was the last smoothie I would drink for a long time. Everything was just too sweet for me, and the smell of the medicine mixed with the taste of the smoothie was a combination that began to make my stomach turn.

The time Bob was with us flew by. He cooked, helped with the kids and kept me company (although I was not the best company, it was great to have him here). He went to Ryan’s Boy Scout Pack meeting, where Ryan was receiving his Wolf badge. He even taught Ryan to make scrambled eggs! The love a father has for his daughter is unconditional, and I needed that love during this time.

Looking back, I think this round of chemo was one of the most difficult that I experienced. Everything just seemed worse. I had started getting neuropathy in my fingers – tingling, numbness and pain (mainly in my thumbs). I was also starting to see issues with my nails, a common side effect. My fingernails had ridges in them – there were lines in the nails that went white, pink, white, pink. My two big toenails hurt and had turned yellow and brown, like I had injured them. I knew they would fall off, it was just a matter of time.

I had every symptom that normally accompanied chemo, but everything seemed heightened this time through. My family was too loud – I had a hard time being around my kids in the living room. All the noise of their wonderful lives and their endless kid energy combined with our hard wood floors and echoing living room made my head ache. Being up in my room became a way of life for those first few days post treatment. I even began eating alone in my bed. But then being in bed for an extended period of time was hard on my body as well. I honestly felt like I was 100 years old. I ached all over, and had muscle tension like I had been working out, even though it had been months since I had been in a gym. Sleep was elusive, but the Ambien helped a little. Driving in the car was also extremely uncomfortable – I could feel every bump, and it made my whole body hurt. But I knew each day I would feel better than the last, even if it was just a little bit. I had something to look forward to.

Facebook Post from November 9, 2010 at 9:56pm
“mmmm...Cinnamon Toast Crunch. Why do I love you so much?”

Despite feeling utterly miserable, I had no problem eating. And of course, I couldn’t taste much, but cinnamon was one of the few things that still sounded good and I could kind of taste. I ate bowls and bowls of Cinnamon Toast Crunch. What was I, eight?

Facebook Post from November 13, 2010 at 2:20pm
“LONG week this week....still waiting for my energy to kick in. 4 days in bed is just too many!”

Facebook Post from November 22, 2010 at 10:37pm
“FINALLY feeling like a semi-normal human being today, 14 days post treatment!!! Ok, well I guess the normal part is debatable..... :) One week of feeling good before we do it all over again. That is something to be grateful for!”

It took 2 weeks for me to get my energy back. But I was half way done, and that was something to celebrate! I had made it this far - I could certainly endure 3 more treatments and then begin to put this whole thing behind me.

Everyone Needs a Heap O' Christians in their Life

Do you ever meet someone and they instantly feel like family? Living 3000 miles away from our immediate families for nearly 15 years has been difficult. Without the help of family, you tend to rely on those around you more than someone who has their family near. My family has been blessed with incredible friends in all the places we have lived. But there will always be those that stand out above the crowd. Friends you have experienced life’s greatest joys and deepest sorrows with. Friends you know you can call any time, day or night, and without question, they will be there for you. Friends you would do anything for. Friends who will do your laundry, clean your kitchen, and climb in bed with you to chat when you are not feeling well. Friends you can laugh with and cry with. Friends you trust your children with. Friends, who are so kindred you just feel like they MUST be long lost relatives. Friends, who despite location or circumstance, you know will be forever friends.

I suppose there are people who go through life without the blessings of a wonderful friend. The thought just breaks my heart. I have been blessed with an army of angel friends. My life has been changed by knowing them. When I think of the joy and love that has been given and received over the years and especially during this trying time, I know I have experienced a glimpse of what heaven will be like.

Mama's Back!

My husband makes me laugh. It is one of the things that I love most about him. Neither of us can sing well, but it has never stopped us from belting out a note now and again. Michael loves to annoy our kids by singing funny songs to them in a deep voice, or he will sing one line and expect them to sing the next verse back to him (“Popcorn Popping” is one of his signature hits!). He can always make us laugh, and his singing will lighten the mood in any situation. It made me happy that my months of chemo were no exception.

When the fog was lifted after each treatment and I would return from that nasty dark place chemo takes you to, Michael would sing “Mama’s back! Back again!” I was often quiet and withdrawn the first week or so after treatment, but the day that I would bark at someone, boss someone around, or take charge of a situation (like my normal self :), he would say “Mama’s back!” I know how miserable I was; I can only imagine what it was like for him to watch his spouse go through something so horrible and be completely helpless. He was grateful when the normal Jenna would return to our family. So was I.

Hot flashes also took on a musical note around here when Michael would sing “One Hot Mama” a la Trace Adkins as I whipped of my hat/sweatshirt/blankets to cool off. I have to admit, this was one of my favorites. I just love a man with a sense of humor.

Ambien to the Rescue!

Facebook Post from October 26, 2010 at 7:52am
“Sleep. Oh, how I have missed you! Feeling so much better today!!!”

After a nasty cold and no sleep in several days, I finally got a prescription for 10 mg Ambien. Can we say lifesaver??!!! When you are exhausted but still can’t sleep and you feel miserable all over, you will try anything to get some rest.
I wasn’t crazy about having to take more medicine for something that I used to be able to do all on my own. But I knew that if I got some rest I would be healthier and better able to handle the next round of chemo. I just wanted to get through it all. A few months of Ambien wouldn’t kill me, and in the beginning I did have a few days that I didn’t need to take it. Towards the end of chemo I would come to rely on it every night to help me stay asleep. I would often fall asleep fine, but just couldn’t stay asleep through the many hot flashes I was plagued with each night.

No sleep=grumpy Mama. No one wants a grumpy Mama. Trust me.


The Food Network, My New BFF'S

In my attempts to prepare for the days I would inevitably be in bed with nothing better to do than watch TV and feel like poo, I brought every chick flick that we owned up to my bedroom and placed them in a basket on top of my mini-fridge. I even added a movie to the collection here and there. I had books on stand by as well, ready to be read at a moment’s notice. Wanna guess how many movies I watched during my entire 4 months of chemo? NONE. Books? NONE. Funny, huh? I was too tired to watch an entire movie. I would doze on and off all day, and it got really annoying to have to keep rewinding a movie because I had slept through a 20 minute section. I was also too sore/tired/sick to keep getting up and changing the movies. My eyes were too sore to read. My brain was too fried to take in the complexities of a good novel. (This will come as a shock to those of you who know me, I know!)

So I did what any semi-respectable person stuck in bed, perpetually hungry with a bad taste in her mouth would do. I started watching Food Network. The shows were short, they were always happy. Everyone’s food always turns out perfect. I didn’t have to read a thing. If I fell asleep, no problem! Another show was always on next, and its easy to tune in half way through. Within a couple days I had the entire daily line up memorized on The Food Network and Cooking Channel. My days of misery were now spent with my new best friends Ina, Paula, Giada, Bobby and even the great Julia Child. Half of what they made sounded divine; the other half made me nauseated. But they were always there, my trusty celebrity chefs with their styled food, well lit kitchens, and a smile to greet me. I swear I even gained a few pounds just by watching.

Menopause at 34: Is it me or is it HOT in here?

I was told that chemotherapy would more than likely put me into temporary menopause, and it would happen pretty soon. I had my last menstrual cycle in October 2010 while undergoing treatment, and then they stopped. I have not had one since. In about 35% of cases, the menopause could be permanent. We wouldn’t know for at least a year if this was the case for me.

Menopause at 34 meant that I had to come to terms with some pretty big issues. I always wanted to have four children, and I wanted to try for baby number four the fall that I got diagnosed. I needed to consider that we might not have any more children. Norah was only 3, and I had never once looked at her and thought she was our last child. Despite horrendous morning sickness and the trials of having a newborn, I always wanted another baby. I was grateful for my 3 happy and healthy children, but it took a lot of pondering and prayer to be ok with the fact that they might be all we were blessed with in this life.

Facebook Post from December 17, 2010 at 5:42pm
“[Jenna] knows her chemo-induced hot flashes must be bad when her children randomly think of things she can use to fan herself when she gets hot.”

Menopause also brought me into the wonderful world of hot flashes and night sweats. What a joy! What a treat! There is nothing worse than sitting comfortably in a temperate room, only to break out into a complete sweat for no reason. The best is when it is a really bad hot flash (yes, some are worse than others) and you get beads of sweat dripping down your face or neck. Sexy, right? Since I was breaking a sweat without actually exercising I wondered if I was burning calories as well. The growing size of my butt led me to believe that the answer was no.

All this sweating became even worse with my baldness. I would wear a hat or wig to cover my cold head. I would have a hot flash. I would get sweaty and take off said hat or wig. Then the hot flash would fade and I would be left soaking wet and freezing. Repeat this about every 20 minutes each and every day. When I was in the car I would either have the heat blasting or have the window rolled down and my head out like a dog. There is no happy medium for the chemo-induced menopausal woman! I suddenly had a whole new appreciation for all the women I knew who had gone through menopause. I would never tease or laugh at a woman all flushed and fanning themselves again.

The hot flashes and night sweats were worse in the days just following treatment. There were times when I had to change my clothes in the middle of the night because I was drenched. I would sleep with a towel on my pillow to help suck up the sweat. But the further away I got from treatment day, the less severe the hot flashes and night sweats were.

Living Life 3 Weeks at a Time

My life began to run in 3 week cycles. Here is summary of how each round would work:

Day 1 – chemo, anti-nausea meds, steroids
Day 2 – Neulasta shot, anti nausea meds, steroids
Day 2-7 – feel like crap (although in later treatments, this would last longer. Chemo has a lovely cumulative effect)
Day 8-10 – coming out of the fog/energy returns (again, this would change as time went on)
Day 14 – check up with oncologist or nurse practitioner
Day 18-20 – blood work (to check white count in preparation for next round of treatment)
Day 18-20 – frantically get things ready for next treatment – shopping, stocking the fridge and pantry, cleaning up, organizing, scheduling, etc. PREPARED was my middle name!
Day 19 – start senna laxatives (no more Dulcolax for me!)
Day 20 – start steroids
Day 21 becomes Day 1 and we do it all over again. SIX times!

It may seem monotonous to you, but having a schedule like this made it easier for me to manage the treatments. I always knew what to expect. I knew when things needed to be done, when I needed to prepare. The only variable became how long I would feel crummy after receiving treatment. I felt different every time, and that was enough to deal with. Having a schedule kept me sane.

Chemo - Round Two

I had survived the first treatment. Despite some rocky moments, my body handled the poison well and I even bounced back after about 7 days. By the end of the three weeks, I felt mostly normal. The “my brain is swimming in my head” feeling lasted about a week and a half, and then one day it was gone. Thinking that might part of what people referred to as “chemo brain”, I was really worried that I might be dizzy throughout all of treatment. But chemo brain was something else entirely, and it would be in full effect soon (see future post about the joys of forgetting everything!)

The week before round two was to begin, my fabulous sister-in-law Suzanne had rearranged her schedule, pawned off her children, and flew a grueling flight from Salt Lake City, Utah to be with our family for a few days and help out. Expecting to find me in bed and in need of a nurse, she was surprised to see me up and about, running around and busy as ever. We decided that since there would be multiple family members coming to visit over the next several months, it would be a good idea to get our basement more organized to better accommodate them. We shopped, cleaned, planned and assembled furniture. With her “can’t sit still. EVER.” motto in full effect, the transformation was underway. A Diet Coke and lemon slice in hand, she was down in the basement finishing up old craft projects and decorating and organizing while the rest of my family slept each night. By the time she had worked her magic, our basement went from a cluttered, unorganized space to a room that people actually wanted to be in. There were pictures hanging on the walls. The bookshelves were decorated and they looked amazing. A home office area for Michael was set up. There was a place for everything. My girls room got some much needed decorating as well, and I spent 5 days with one of my most favorite people laughing and eating and forgetting for a short while that I had cancer. Suzy went home with a hurt back and some extreme insomnia, but we will always be grateful for her time and talent to help make our house more of a home.

I had seen the nurse practitioner on day 14 and she commented that she could already tell that the chemo was working. The tumors had softened up a bit (I had noticed a difference, too, but I wasn’t sure if it was real or just my imagination at work. I was STILL having discomfort from the biopsy and the punch gone wrong, and that seemed to lessen as well). I was beyond thrilled. All this misery would be worth it if it actually worked!

Facebook Post from October 17, 2010 at 10:12 pm
“Happy Chemo Eve! Round two tomorrow!!! Round one was a success – dr’s say they can already tell it is working - tumors have already softened up! WOOHOO!!! I was just told about the sweetest prayer offered tonight by one tenderhearted eight year old. "Dear Heavenly Father. Please bless Miss Jenna that she will get better. And that her sickness will go away...the one that no one likes." LOVE IT!!!!”

Round two was Monday, October 18, 2010. Ashley was meeting me at the infusion center, and then Michael would bring lunch when she had leave to pick up her boys from school. She even brought me my favorite smoothie from Smoothie King (no bananas!) to drink during the Adriamycin. Despite Ashley’s morning sickness (she was expecting baby number four) and the fact that I was getting filled up with poison to kill the disease raging in my chest, we had a great morning together.

Facebook Post from October 25, 2010 at 6:58 am
“cold + fever + 7 days past chemo = yucky Monday”

Round two was my first introduction to how my body would handle a cold under these unusual circumstances. A simple head cold with just a stuffy nose felt like I had a full-blown flu. I had fever and chills and couldn’t sleep at all. I went in to the doctor because any fever while on chemo is cause for concern, and mine had almost reached 100. I was told I only had a cold, but was given an antibiotic to fight off infection, and because I wasn’t sleeping, she upped my Ambien dose to hopefully let me sleep. When I picked up my prescription for the antibiotic, I laughed when I read that the primary use of the medicine was to treat anthrax exposure. Lovely.

My symptoms after round two were about the same as what I experienced during the first treatment. Taste became more of an issue, and the juice boxes that I couldn’t get enough of last time no longer tasted good to me. I could only taste the sugar in things, but not the actual flavor. The only exceptions were cinnamon and chocolate. I drank lots of chocolate milk, and cinnamon gum was a lifesaver. The hardest part was that I was always starving, so I was forced to eat even though I couldn’t taste it. Staying on top of my senna laxatives helped in that department, and round two did not see a reoccurrence of the pooping dramas of the past. My family remained patient with me, letting me rest when needed, and be alone when I just couldn’t be near all the noise and hustle that normally felt like home.

It was during this treatment that I noticed I was not comfortable driving in the days following chemo. I felt foggy and slow to respond. I decided I would not drive for at least the first few days just to be safe. The last thing I wanted was to endanger my family or someone else.

Round two also brought out more family and we were thrilled to have my sister Ashley come visit just after my treatment, and my Dad Don came for Halloween. I have been blessed with an incredible family, and it was so great to have them here.

The girls with Auntee Ash!

My Dad watching Norah at a neighborhood Halloween party.

The kids and I at our ward Trunk or Treat. Halloween was wonderful, despite the circumstances!


Baldy Mama...and not just on my head!

It may sound vain, but amongst all the side effects that chemotherapy would bring, I was most concerned about losing my hair. I am not a stylish person – most days my plain hair was in a simple ponytail. No bump. No pouf. Just an old school ponytail. I did not have highlights – I would color my hair all one color to add some richness and to hide a few pesky grey hairs (ok, more than a few. But who’s counting?). I do not know how to French braid or put my hair in cute, trendy styles. (Trust me, my 2 daughters are fully aware of my lack of skills in this department!) But I was really upset about losing my plain, un-styled, shoulder length, thick-ish brown hair. For me, losing my hair was the one thing that would set me apart as a “sick” person. I would no longer just be Jenna, mother of Ryan, Stella and Norah, or Jenna, wife of Michael. I would be bald. I would look sick. Everyone would know I had cancer. I would get that look – you know that look you give to someone who you feel sorry for. You stare and tilt your head and say “awww” internally, wondering what is wrong with them. I certainly wasn’t ashamed that I had breast cancer, but up to that point I had enjoyed a life of anonymity. I do not like to stand out in a crowd. Being bald would take all that away.

I was also going to lose my hair and be bald in the winter, so I did a lot of thinking about how I was going to cover my noggin up on those cold Baltimore days. Hats? Wigs? Scarves? I knew what I didn’t want – I didn’t want the scarves and wraps that screamed “I HAVE CANCER!” I know many people embrace it and own it and can wear them with pride. I knew that I would not be one of those women. (When discussing this issue with my Mom, she laughed and said “Just promise me you wont get those terrycloth turbans that the old women wear.” Not to worry, Mom. No pink terrycloth turbans that gather in the front for this girl!)

I wasn’t really sure how I felt about a wig either. I was going to be bald, and wearing fake hair seemed a little strange to me. Like it was too fake. Like I was cheating. But if I wanted to look “normal”, a wig would certainly help me blend in in a crowd.

Having become somewhat of a wig expert herself after her mom was diagnosed with pancreatic cancer, I invited my wonderful friend Ashley to come with me to look for a wig. If my fashion and style sense is a 0, hers is a 10. I trust her opinion completely, and I knew she would be the perfect person to help me through this. Choosing a wig was personal. I didn’t want to do it alone, and was grateful to have someone as special as her come along. Oh, the blessings of a best friend! We made a day of it, shopping at a local wig shop and then going to lunch at Cheesecake Factory. Despite the fact that I was shopping for fake hair to cover my baldness, in an endless sea of bad days this day will always remain a highlight of mine.

The wig I selected was very similar to my natural hair color (actually, it had better highlights than I would ever have!), and was a short a line bob. It was synthetic, but was hand-tied at the scalp which made it look like real hair. It had some bangs, which the sales lady told me would come in handy if and when I lost my eyebrows. When Ashley and I found out how much it was ($495!), neither of us were surprised. Of course WE would pick the most expensive one there! But luckily for me, I had a prescription from my oncologist for a wig (yes, they do that) and my insurance would cover up to $350. The wig shop would take the $350 from my insurance and would not charge me the remaining fee. I placed the order, and was told it would be available in a week.

I also scoured the pages of the Headcovers.com website, buying all different hats and a couple scarves. I was pleasantly surprised at the selection of hats that not only covered your head completely, but were cute and stylish too. I bought bandanas from Michael’s Arts and Crafts as well, but didn’t love those as much. I was willing to try anything. I just wanted to have options when it came to this most visible sign of my condition.

When meeting with my medical oncologist in early September, we spent a good bit of time discussing the many and varied side effects that chemotherapy would bring. When I asked if I would lose my hair, his guaranteed “Yes” was difficult to take in. When I asked when I would lose my hair, I was shocked when he said “Around day 14. Of your first round of chemo.” WHAT???!!!!! I thought I might lose it more gradually, or later on in treatment. But just after the FIRST treatment? I was not expecting that! (We can thank the Adriamycin, or the “Red Devil” for that one – it gets to work fast killing everything – good and bad. Hair is no exception.)

Facebook Post from October 5, 2010 at 10:28pm
“Last night with my "long" hair - it's getting cut short tomorrow! YIKES!!! Bring on the pixie haircut, baby! :)”

I decided that I needed to cut my hair shorter in order to better deal with the hair loss. It just seemed it would be easier to handle the hair falling out if it was shorter rather than longer. I didn’t want to shave my head pre-emptively, and secretly I wished I had enough guts to chop it off in a cute funky hairstyle and color it some crazy shade of pink. But that was never going to happen, so I settled on a respectable, cute haircut from my stylist that would ease the pain just a bit. I said goodbye to my old hair, knowing it would be a while before we met again, if ever. I remember paying my bill at the salon and thinking it was ironic that I just paid to have my hair cut when in just about a week I would start losing it all. Oh, well. At least I would save some money not having to pay for haircuts or waxing for a while! (I still claim that the biggest perk of chemo was the not having to shave or wax at all. It was awesome.)

Remembering the words of my oncologist, I still found myself shocked on day 13 post treatment when my hair began to fall out. Except that it wasn’t the hair on my head that fell out first. I lost the hair…. ahem…. down THERE! Imagine my surprise when using the restroom and it looked like I had been shaved in my underwear! It was quite amusing to me, and while it didn’t make losing the hair on my head any easier, it was something I could laugh about. And on some days, laughter was all I had going for me.

Facebook Post from October 14, 2010
“As promised.... just a little late. Here is the before and after of my new hair cut. Don't get too attached - we are entering the mangy dog phase of my hair falling out. Time for some hats and scarves :)”

I had my cute new hair for about a week and then it started falling out, just like clockwork. And it fell out in clumps. My pillow was covered in hair in the morning. Taking a shower was a challenge: my hair needed washing, but it was difficult to wash it without removing mass quantities of hair in the process. I had to let it air-dry – using a blow dryer was out of the question. My short new hair needed some texture cream to keep it looking good, but it became impossible to put in. Every time I would try to rub it in, I pulled out huge clumps. I had hair everywhere.

Michael wanted to me to shave my head to make it easier. My sweet stylist had even volunteered to come to my house and shave my head when things got bad. I was afraid to shave it. I wanted to hang on a little while longer. But as the days went by, the hair loss grew worse and worse. By day 18 post treatment, my part had grown wider and my hair was so fine I had to wear a hat to cover it up. On Friday night, 3 days before my next treatment, I decided it was time. My husband shaved my head while my kids looked on from the bathroom door. My haircut had lasted less than 2 weeks.

Facebook Post from October 15, 2010
“Got fed up with all my hair falling out and had Mike buzz my head. Now that’s true love!”

I wasn't ready to take a picture of my shaved head just yet.


An Outpouring of Love

Facebook Post from September 7, 2010 at 11:42pm
"A thousand thanks to all the Baltimore angels who descended on my home this weekend. You know who you are, and words can't express my gratitude."

Facebook Post from September 12, 2010 at 9:19pm
"So grateful to my Cromwell Station family for all their love and support. Loved the basket and blanket - you are absolutely the best! Saving Second Base - FIGHT LIKE A GIRL!!! Love you all :)"

Truly, there are not enough words to express my gratitude for the love and support we received throughout this journey, and especially during those first few months. My family was buoyed up each day by those who reached out to our family, and we could not have made it through without that outpouring of love. I will never be able to repay the kindnesses shown, and I will be forever grateful for the generosity of our family and friends. In addition to the countless cards and gifts we received to help and encourage us, here is a list of some of the things people did that made a difference to me and my family:

• Amazing friends organized a group to clean and organize my home (including gutting a bathroom that was in need of repair!) while we were away at a family wedding in early September. Can we say above and beyond?
• Neighbors put together a thoughtful basket of things I might need during chemo (water bottle, mouth spray, gum and candy, a journal, etc).
• Co-workers of my husband, wanting to help but not knowing what to do specifically, collected monetary donations for our family. In the end, we received almost $4000, which was used to hire a cleaning service and help with medical costs and things around the house. What a blessing!
• A sweet friend set up a calendar on Lotsa Helping Hands so others could sign up to help with meals and childcare during my chemo weeks. There were more than 50 friends on the list, and within a week, meals were scheduled 4 months in advance. I have never felt so loved!
• An incredible friend donated airfare so members of our family in California could travel out to help during my treatment weeks. The help was so needed, and would not have been possible without such a generous offering.
• A family friend in California began sending me weekly notes of encouragement in the mail. This lasted each week until my treatments were over in May! What a treat to get these in the mail each week, and many were posted on a bulletin board in my house to remind me to be strong, even on my worst days.
• A neighbor, who happens to be a nurse, volunteered to give me my Neulasta shot (an immune booster given the day after chemo) at my house, saving me several thousand dollars ($50 to do it at home, or $2000 in office. Which would you prefer?)
• A co-worker of my husband nominated our family to be a recipient of the Pink Dish! Campaign through Let’s Dish! in Baltimore. We received 8 yummy freezer meals (which I had them divide into 16 smaller meals) – all completely free. They were a lifesaver on nights that I wasn’t up to cooking.
• Another group of friends organized a playgroup so my 3 year old daughter would have something fun to do one morning a week. They even arranged transportation for her on the weeks I wasn’t up to driving.
• A wonderful neighbor enrolled my daughter in a music class once a week and provided transportation for her, along with countless hours of playtime at her house so I could rest.
• A sweet friend came over one day a week to help me clean, organize and help with my daughter as a service to me and my family.

I can’t tell you the number of people who told me they were praying for me and my family. It was incredible! The strength I received from the numerous prayers offered by so many was something I will never forget. There is such power in prayer! A special fast was even held amongst our Stake leaders, and multiple people put our names on the prayer roll in temples all across the country. All of these things combined helped to uplift and sustain me, even in my darkest hour.

Komen for the Cure: October is a great month to have breast cancer

The day following Dulcolax Disaster Day was the Susan G. Komen Race for the Cure in Hunt Valley, Maryland. The race is held on a Sunday here in Maryland, and while I wouldn’t normally miss church to attend a race (no matter how good the cause, I know where I need to be on a Sunday morning), this race happened to fall on the same day as general conference. That meant we didn’t have meetings that morning but we would get to watch to the broadcast from Salt Lake at home, beginning at noon. The race was at 8:30am and given my recent diagnosis, my family and I decided to go ahead and walk it. I even ordered t-shirts for my family from CafĂ© Press for the race. Michael’s shirt read “I wear PINK for my WIFE.” Ryan’s shirt said “TOUGH KIDS wear PINK.” The girls had the same shirt “I wear PINK for my MOM.” And my shirt read “FIGHT like a GIRL.” We were all set!

After the horrible night I had experienced, I was afraid I wouldn’t have enough energy to walk even the 1 mile family fun event. I knew there were a few neighbors and friends who were planning on attending with me, and I didn’t want to let them down either. I woke up early that morning to shower and see how I felt. I certainly wasn’t 100%, but I felt well enough to give it a shot. There was a knock at my door around 7 am, and when I opened the door, I was stunned. There were more than 20 people waiting on my front steps, lawn and sidewalk, all ready to walk with me! I was instantly brought to tears. What an incredible surprise. There were signs with our team name “Sweet Jenna” in big bold letters; Komen shirts and homemade shirts and hats, all to support me. It was all organized without my knowledge by the most amazing friends, and I couldn’t have felt more loved and supported than in that very moment.

We drove over to the race and while I didn’t feel great, I knew if I just pushed through it I would probably be fine. How could I miss out on this incredible experience and let everyone down who had shown up to support me? Upon our arrival, I was further surprised to see even more friends join us at the event. Our group had nearly 40 people, all there for me. Words cannot express the gratitude I felt that morning.

When the walk began, I remember looking ahead of me at the sea of people out walking and thinking to myself that all these people were here to raise money to find a cure for the cancer that I had at that very moment. Most of them didn’t know me, and I didn’t know them. But here we were, all walking together. It was an incredibly moving and spiritual experience for me, one that I will not soon forget. I was blessed to be able to walk the entire mile course without any problems, plus the half mile to and from the car. The Komen race gave me the strength to keep on fighting.

Facebook Post from October 3, 2010 at 1:12pm
"Many, many THANKS to all my B'more peeps who showed up on my lawn at 7 am and walked with me today. You are the best, and my first ever Komen Race was awesome. Love you all!!!!!"

Dulcolax is Not for the Faint of Heart!

Don’t let the nice green packaging fool you. When purchasing a stool softener/laxative, I was a sucker for the packaging. I saw the nice green and brown Dulcolax box and immediately thought natural, gentle, good for you. I was the sucker every marketing focus group hopes for. But I am here to tell you that there was nothing subtle or natural about my experience mixing Dulcolax and chemotherapy. Read at your own risk ☺

First, let me back up and share a bit about how my first chemo treatment affected me. I wasn’t completely miserable, but just felt crummy over all. The best way I could describe it was that it was similar to morning sickness, only with a flu-like quality. I was hungry, but nothing really sounded good. And then I had heartburn after I ate. I had a yucky taste in my mouth that wouldn’t go away and my tongue felt as if it was burnt. I couldn’t use regular toothpaste any more, but had to use the Biotene products meant for dry mouths. And boy was my mouth dry! I knew I needed to drink lots of fluids to flush out the drugs (at least 60 oz a day), but it was hard to even take just a few sips in the first days following treatment. I found that a straw was super helpful in getting liquids in and bypassing my burnt tongue and altered taste buds. Round one, and Jenna became the queen of the juice box!

It may sound strange, but even the hair on my head hurt, like it had been up in a ponytail too long. I was tired, but couldn’t really sleep, as the steroids kept me awake and jittery. I could smell the chemo drugs as they slowly made their way out of me. And my head felt really floaty, like my brain was swimming in my head. It was all so very strange. I had walked into the infusion center that Monday morning a healthy feeling 34 year old woman, and within a few days, I felt as if I were 80. If round one was bad, what was round six going to be like?

Facebook Post from September 30, 2010 at 4:25pm
"Oh, it is a fine line between nausea, heartburn and hunger. Wish I could tell which was which :)"

I never threw up, and fortunately the anti-nausea medication kept the nausea at bay. I was taking Emend the day before chemo, the day of and the day after, and was given Zofran to take as needed. I also received my Neulasta shot on day 2 post treatment, and was told to expect even more flu-like symptoms on days 3 and 4. Round one with Neulasta wasn’t too bad, but I would notice a difference in the treatments to come.

My kids handled my sickness well, for the most part leaving me alone, and coming up to my room when they needed to talk. I think I spent the better part of those first few days resting in bed or on the couch downstairs.

I was told that I needed to make sure things were “moving along” in the bowel movement department, especially during the first week post treatment. The anti-nausea medication has a tendency to make you constipated, and it was important to keep things regular, to get all that chemo crap out of you. Literally. While I noticed things slow down a little bit in that department, I thought that because there was at least some movement, I was ok. Wrong!

Dulcolax Disaster Day was Saturday, October 2. I was day 6 post treatment and wasn’t feeling too great, and I had an inkling that things might be a little backed up. I decided to take the Dulcolax that morning, again thinking “gentle relief.” Ryan and Stella had soccer games and team pictures, and then we headed home to listen to general conference (a church broadcast held twice a year). I lay in bed feeling worse and worse, trying to sleep and find some relief.

Just before 6pm I began having horrible pains in my stomach and I took up residence in our half bathroom for the next little while. I will spare you the all the gory details, but lets just say that Dulcolax acted like dynamite to the cement that had taken up residence in my bowels. My evening in that bathroom was worse than anything I experienced giving birth to my three children. I sweat through 2 shirts and my makeup looked much like the crying Tammy Faye Baker when all was said and done. Lovely image, right?

My poor husband! When he came to check on me, the look on his face said it all. I was in bad shape and short of taking me to the hospital, there wasn’t much he could do to help. In an attempt to get the kids fed, he began heating up some leftover pizza in the oven. When the smell of the reheating pizza hit the bathroom, I thought I just might die! It made me feel so much worse. I was so weak when all the business was done, Michael had to help me up the stairs to my bedroom. He also had to help me change my sweat-drenched clothes - I just didn’t have the strength to do it myself. I was shaking and had horrible chills and tried to get some rest, but it was difficult.

Not wanting to ever repeat that experience again, I quickly learned that the key to a successful round of chemo was good poop! Who would have thought? It was out with the Dulcolax and in with the senna laxatives. I found that by starting the senna two days before treatment and continuing it until day 4 or 5, I kept things moving enough that I never had a recurrence of that night of horrors.

I am sure hearing about my bathroom dilemma was the last thing you wanted to know about, but hey, everybody poops, right?