Crap. I caught a cold...

Episode XVIII: Sick

So, my ear was a bit bothered when I went for my Chemo treatment last Tuesday. I mentioned it to the doctor, but nothing looked odd. However, that was usually a sign I might have a sinus cold or something wasn't quite right. I had lost some of my hearing (bilateral hearing loss) in October 2012 and that was a typical indicator that I didn't really feel well.

I got my treatments. I felt the normal side effects. I felt more than the normal side effects. It was not like a traditional cold - it was weird. By Friday I couldn't take it... plus, I was starting to fever. Not good.

I had been warned, a temp of 100.4 was bad. Like pack me up to the hospital, I might be getting IV antibiotics kind of bad. I was hovering at 99.9 and religiously took Tylenol to get it to drop to the 98-ish range. I did not have sweats, but I could not regulate my temperature at all. I was cold. I was hot. I didn't know what I was.

FEVER... Peggy Lee song

My left neck lymph node hurt and felt swollen. It made my entire neck unusable. I couldn't lay on my left side. I could barely tolerate laying on my right side. It hurt to lift my head at any point. Sitting up, bending down, or any movement of my head was painful. Forget even turning my head, that was out of the question.  It was not the typical my lymph node was irritate cold... it was holy crap my neck friggin' hurts!!!

Also, my throat felt closed off. I thought it was a chemo side effect, but it was not. I had a hard time swallowing, not like the sore throat pain that I have had in the past. It was more things are getting stuck and how am I going to eat anything or drink anything?!?

On Friday I called the doctor's office and was given some antibiotics since it sounded like a cold. I did not have to be seen, I was prescribed some medicine and needed to call back if it was still bothering me on Monday. Of course, any temperature issue was an emergency, but I fortunately got to avoid that.

I did call in on Monday because it wasn't gone, but better. If I felt I needed to be seen and my white blood count to be checked I could have gone then or at any time, but I seemed to be improving. Slowly, but improving. I spent most of the weekend and week asleep, tired, or wanting to feel better.

Me getting my sleeping on while sick.

A week had basically gone by, but on Thursday I woke up and felt so much better. Friday was even better - I was Cured (Friday I am in Love by The Cure). I realized then how horrible I had felt, it was like it dawned on me that it was bad after it was over. I was tired by mid-afternoon, but it was still leaps and bounds better than the week before. It wasn't until the weekend that I felt like me.

I had been down for the week, I had so much undone. I needed to get the next week ready too - cause Chemo #3 happens. I needed to fit in the week before tasks and the next weeks tasks into a few days - which meant I better feel good!

Getting back to normal!

In my head...

It was definitely not like a normal cold and I do not think I realized how bad I felt. Since, I had no idea what a cold felt like while having low white blood cells I just thought it was either chemo or weird symptoms of being ill. I think I had a sore throat and general cold, but not having the immunity to fight it made it cause real physical pain. I only hope I can avoid colds in the future.

"For years now, I've wanted to fall asleep. The sort of slipping off, the giving up, the falling part of sleep. Now sleeping is the last thing I want to do."

- Chuck Palahniuk, Fight Club (novel, Chapter 25)

Episode Reference: Sick, by Shel Silverstein

Family fun... shaving mom's head!

Episode XIX: I think I am going bald...

It was time to make my impending baldness a fun family event - we all decided to cut my hair together. I wanted the hair loss to be a good memory and not something traumatic for the kids. What a better way than to let them cut my hair. A normal taboo thing to do, my kids were pumped about cutting my hair. Maybe too excited...

   

I am going to hand over scissors to these two???

My hair was falling out in bulk and it was becoming more of a hassle than it was worth. I was sick of dealing with it, so it was time. The main rules...

1. Don't cut off mom's ears.

2. Stop if I say stop... since my bones are still sore.

3. Don't cut anybody else's hair - even your own!

4. Cut it any way you like - really - have fun with it.

After determining that it was going to be a messy undertaking, we opted to move the salon session to the back porch. Then we turned on some music and I turned over the scissors over to the kids. They began creating their masterpiece!

   

The first cut is the deepest... Cat Seven's song

  

My kids were having way to much fun... 

Walking on Sunshine, Katrina & The Waves song

After some time and hair falling, they came to my first new hairdo. It was the first of many looks... a semi-punk hairstyle!

Hey Ho. Let's Go.... more hair to cut. 

Blitzkrieg Bog, Ramone's song

The shorter my hair got - the more the chunks that had fallen out were noticeable. My special manged hair was being cut even more special, by my favorite people. The scissors eventually turned into an electric razor. And then it happened, I officially had the shortest hair in the entire family!!

Time for my second style, an almost military high-and-tight!

My backyard barber station making me well, less like me, and more like jarhead...

We aren't done yet... I still haven't found what I am looking for, U2 song

We can do better! That military style was too uptight for me... we could still have more fun with my hair. Come on kids get more creative... Let your imaginations run wild! They transformed my next style from a Mohawk into a Momhawk!!!

  

My new Momhawk... 

It's the end of the world (my hair) as we know it... REM song

I must admit, the Mohawk was pretty cool to have for a few minutes. However, in the end that tiny strip of hair would fall out too. So cut it... cut it all! After taking a good look at myself, I immediately knew my new Cancer Parentage...

In my head...

What a great day! We all had so much fun and really rocked out to what could have been a shocking situation. I am not sure if my kids would be good future hairstylists, but they did have a lot of fun altering my look. We laughed through the whole process and everyone got a chance to take some of my mangy hair off. While I haven't shaved off the stubble, I can't imagine it will last too much longer!

It was a pretty simple day with a very simple inspiration...

"If you want to be happy, be." - Leo Tolstoy

Episode Reference: I Think I am Going Bald, Rush song

Week 3 Update... 1/2 way there!

Episode XX: Never Despair. Never Surrender.

2 treatments down and 2 to go… well for AC chemotherapy.

So, during the last treatment the doctor gave me more anti-nausea medicines which helped some, even though they had some not fun side effects of their own. In the end it was about the lesser of two evils. Being ill or having severe constipation. Not sure which was worse as neither was fun to deal with. While I had my normal hug-a-bucket moment, I did not have anything come up. Yeah! Then the proceeding shot caused the bone pain, but it was manageable… after a day or two ;)

Of course they are pumping me full of steroids and other medicine so my “cancer diet” isn’t working out. Even though I get so sick, I don’t want to even discuss or think about food… I can’t manage but basic carbs (toast, mashed potatoes, mac n cheese) which only works against me. Darn Carbs (while raising hands in frustration)!!! And my taste buds were all whacked out so things I normally love were unbearable to eat or I can’t digest them! The really topper was when the other cancer ladies I met said they gained weight on treatment… for real!

Apparently the treatment side effects can include weight gain... why?

1. Chemo - Causes the body to retain (hold on to) excess fluid in cells and tissues. Causes fatigue which makes exercise harder, while increasing hunger. Causes to slow metabolism. Causes menopause which also decreases metabolism.
2. Steroids - Increases in fatty issue, resulting in a large abdomen and fullness in the neck or face.
3. Hormone therapy - Decreases the amount of estrogen or progesterone in women and testosterone in men. Which can increase body mass from fat, decrease body mass from muscle, and decrease metabolism.

That week did turn out to be more challenging than expected. I don’t believe it was because of the chemotherapy treatments, but because I caught a cold. That took me DOWN. I didn’t even realize how bad it was, until I felt better… and I was sick. By Friday after treatment, I was calling the doctor. My neck was so sore I couldn’t move it due to a swollen lymph node. My throat hurt to swallow, but not like a normal sore throat just more closed off (I thought it was chemo related, but may have been wrong). I was getting a fever. I got to 99.9 and 100.4 is hospital… so I got some antibiotics which were enormous! Crazy big, they even had the ability to break into two.

It wasn’t until a week had passed that I felt somewhat better. I still got tired easily, but I could finally move my neck and swallow. I couldn’t even lie down on a pillow on my left side… it was crazy. My neck was insanely sensitive. Of course combined with all the general side effects (and me just being me) I was probably more of a mess than normal and required more sleep than one person should be allowed, even though sleeping wasn’t as easy as you would think on these medicines.

On a not hear-me-whine-I-am-sick note, my hair was falling out last week and a nuisance. The shower was covered. My pillowcase was covered. In general, it was pretty weird how much hair was falling out – even brushing it became something I had to avoid. So now for the fun part!!! Saturday the kids (and husband) got to cut and shave my head. It was so much fun!

Cosmetology 101... have fun!

We turned on some music and I let them go to town on my head. They first created a punk short hairdo (funny), then a high-and-tight (not cool), then a Mohawk (awesome), until finally I was bald. It was so much fun I think it made it a great experience for the kids and me. I now can take very quick showers – no shaving or hair washing needed. And bonus – no need to spend money on cuts, color, & products! However, the Brain Joseph's Lash & Brow Conditioning Gel has kept my eyebrows and eyelashes still on my face - Another Bonus!!!

My take on Where's Waldo?

I am hanging in there and still have my sense of humor, except after 4 pm when my kids have driven me crazy and it is 1 ½ hours before my husband will arrive home. At that time, watch out or at least they should!

“Mothers are all slightly insane.”

J.D. Salinger, The Catcher in the Rye

In my head...

Officially, I am down another treatment. I got to experience being sick while have low immunity and minimal white blood cell count. I got no hair.  I got to watch people avoid eye-contact with me when I go out in public due to my crazy cancer caps. I got way too many naps! I got to watch the joy of my kids face as they chopped my locks. So, lots of new things for me!

My Crazy Week...

Now I get to go next week for Chemo Round 3 as well as meet with the Genetics Oncologist Specialist to discuss various testing and stuff I might need done. Yeah another doctor and more new things! So Tuesday I will put on my treatment smile which apparently annoys my dad … his thoughts, “Get that smile off your face….make us think it’s a near death experience.” Funny!  Guess I will need to fake a pitiful face next time too.

“You must take life the way it comes at you and make the best of it.” 

― Yann Martel, Life of Pi

Episode Reference: "Never despair. Never surrender.” –Rorschach from Watchmen 

Third times a charm!

Episode XXI: "But man is not made for defeat..."

Chemo Round 3

Prior to my 3rd chemo treatment, I had to get prepared. The night before I placed on my anti-nausea patch on my left arm (alternating arms each treatment). Once I got up in the morning the edges were already loose so I had to tape down the edges. My arm will look like some crazed medical dilemma this week.

So, about an hour before leaving I put on my numbing medicine so that when the needle was placed into the port it would be mildly less painful. Mildly. However I did learn the hard way, use ample medicine and press-n-seal Saran wrap made into a tiny bubble so not to press the medicine flat. The flatter the numbing medicine, the less effective it would be.

Prepped and ready for chemo...

I found that going for my 3rd treatment a little more daunting than the rest. I knew what I was getting into and I really didn't want to do it. There was knowledge which helped in preparing, but it also meant that I knew I didn't want the side effects I was about to endure. However, I turned up my car radio and really rocked out to some classic 80s music. Nothing like a musical distraction to avoid the idea of chemotherapy.

So the hubby and I had to meet multiple people prior to treatment. I got registered and jabbed with my port needle before we waited to be seen. And jabbed was the correct word!! Our first meeting was with the nurse practitioner to just discuss my side effects and to make sure my blood work was good. Overall I was pretty good, so the conversation was pretty brief. Basically take your medicines and here are some new ones.

Then the Genetic Counselor arrived and we got to discuss the general concept of genetics, cancer, and testing. Most breast cancers are spontaneous, but 5-10% can be inherited. Essential two specific genes called BRCA1 and BRCA2 play an important role in some breast and ovarian cancers and can be tested to determine whether or not a mutation was found in me. If these genes do not work properly cancer can develop. I was fortunate in some ways as my young age allowed for my insurance to cover the cost of testing.

Click Here to learn more about Genetics & Breast Cancer.

After scheduling my next appointment, I kicked my husband off to work and headed back for treatment. I think I said something like, "Get out of here and pay for my cancer." Of course, in a lovingly manner. Make that money - cause Cancer wasn't cheap!

I got into my seat and started my 3 hour chemo treatment. I really just sat back and tried to read a little and talk to some of the interesting people around me. I was amazed that most of them were able to eat, as there was no way that I could manage Mexican, Asian, or general food during treatment. Guess that was some of the benefits of other types of chemo. Instead, I forced a tiny pretzel into my mouth so that I would have something in my stomach to help prevent the nausea that was already in my stomach.

I have a... Wild, Wild Life, Talking Heads song

After treatment I had to wait around for a prescription, which gave my stomach more time to feel worse. Between the long appointment time and general summer class schedule for my kids, my mom was actually near the Cancer Center when I was waiting. She arrived to wait on the pain medicine while I headed back home. I was glad that I was still mobile enough to make it home without an issue. However, even though I left first I saw my mom pass me on the way home. Just like most things, I am moving and driving slowly... everything I did was S..L..O..W..

After getting home I had to make sure to eat small meals throughout the day to help prevent the nausea. While nothing ever prevents my stomach from being nauseous, having some food in my stomach made it more tolerable. I handled the day pretty well, but of course chemo causes a lot of crazy side effects. The fatigue, nausea, and overall crappy feelings kept me in my daily hang-out, the bed...

Enduring.

In my head...

Blah! Even though I didn't hurl, I did feel pretty rough. I was unable to sleep due to the overall illness and crappy feelings associated with the chemo. Plus, the steroids love to keep me up, as well as hungry... which leads to nausea... which leads to lack of sleep. A giant icky circle... my Catch-22.

“It's been my experience that you can nearly always enjoy things 

if you make up your mind firmly that you will.” 

― L.M. Montgomery, Anne of Green Gables

Episode Reference: "But man is not made for defeat," he said.

"A man can be destroyed but not defeated."

-Ernest Hemingway, Old Man & The Sea

Triple dose... Neulasta shot #3

Episode XXII: Gotta Get Up and Try Try Try

I got my toxic butt out of bed and made my way to my afternoon appointment. With only a consistent mildly nauseated stomach, I headed out for my 3rd Neulasta shot. The one great thing about the appointment was how fast it was. I basically walk in, sign in, take a pass, walk to short-term treatment, and pick out a seat. Super fast and involves no blood work or payment. One positive about that treatment.

Hit me with your best shot... Pat Benatar song

So, I did my normal shot procedure... I sat and waited briefly. Then I pulled down the top of my shorts and got a shot in the tummy. Each time was a different side. The shot doesn't hurt or at least it doesn't hurt me. However, I do not mind shots.

Coolest trash can that was right near my seat!

I recommended that they gave out cool goody-bags that had the toxic or bio-hazardous labels on them. While not all patients would appreciate them, I thought how cool it would be to have something like the trash can or toxic bag they bring the medicines out in.

After my idea was turned down, I headed home. Of course I have chemo brain and yes its a real term... click here if you need to proof. I drove halfway home with my car brake on... I am an idiot. While the shot doesn't kick in immediately it does cause some bone pain.

By the evening... Making trips to the bathroom seem like mile walks. Eating a small meal turns into a few hour event. Often it makes any human contact painful... don't touch me or I will... well, I won't do anything cause I can't lift my arm to do anything. I feel like I have tiny T-Rex arms that were just keeping things out of reach.

Me and my bald head doing a horizontal nothing.

I did make my way outside once and it was funny. My son was throwing ball with my mother and accidentally threw it my way. Thank goodness a chair was in front of me to block the impact. However, I couldn't move so I just tensed up ready to take the hit. My mother was surprised at how slow my reaction was because normally I would just catch and throw it back at him. Instead, I just reacted ready for pain. I think my legs barely raised off the ground and my arms pulled in a few inches. I closed my eyes in case it was going to hit my face. It was really funny and kinda pathetic. However, that tiny jolt made me decide to move back inside... I have officially become a weenie!!

In my head...

The shot was like the cherry on a sundae. It adds the final touch to my chemo treatments, however it was a nasty rotten cherry! And the sundae was made of rotten bananas and moldy ice cream. But it was my sundae and I have to eat it!

The more AC chemo I have the more it compounds the side effects. The more I take the longer I take to recover. My fatigue has increased. My constipation has increased. My other side effects have increased. While I can still laugh, sometimes it was harder to do... I think I am too tired or too dense to get the joke some times.

"I took a deep breath and listened to the old brag of my heart. I am, I am, I am."

-Sylvia Plath, The Bell Jar

Episode Reference: Try Pink song

Week 5 Update... 3 down. 1 to go.

Episode XXIII: We are such stuff...

I managed to make it through another chemo treatment! Yay!

I will admit that on my drive in last week, I was like "Do I really have to do this again?" I really hate when they jab that needle into my port. I really hate the side effects. But whatever... I put on my big girl panties and my bald girl cap and made the best of it!

Chemo cap on... ready to go!

The treatment went as well as could be expected. The side effects were tolerable. Of course I felt bad - but I am feeling better! It seems that every week new things just creep up on me, like rashes, constipation, and so many other things. The quirks of chemo never cease to amaze!!

For real, a rash on the center lower back! Come on!

Of course I seem to be susceptible to everything. I got a sore throat and some thrush over the first weekend after treatment – which went away quickly on antibiotics. I probably helped myself by calling the doctor the minute my throat started to bother me. After the last go round, I learned not to wait… especially if it could be a cold. This time, my recovery was faster – so that was good. But the overall discomfort in my mouth was annoying and unpredictable. Seems as if sores and irritation were just par for the chemo course. Some of the mouthwashes help, but it comes and goes as it pleases.

All these just to make me function... my daily routine!

I will admit I am my own freak show and my family was getting a kick out of it. My Jeopardy answers were usually half coherent and half correct. I may have my own language of combining words that make me sound nonsensical at times. I am a slow moving target that’s only defense was to tense up rather than protect if unforeseen objects were accidentally hurled in my direction.

      

Yep! I am the Freak Show...

The most annoying thing is how friggin’ s-l-o-w I am! 

S-l-o-w thinking. S-l-o-w moving. S-l-o-w reacting. Overall, S…L…O…W!!! I am staying away from those silly “real age” tests, as they would probably tell me that I am in my 70s-80s!!! However, my newly formed sloth-like reactions and speed should improve when I get done with all these drugs. I hope!!!

Sums me up!

Like I keep saying, this experience could always be worse. Some of it is downright funny! My son was away during the week so my daughter and I seized the opportunity to have some silly girl time together. Also, I have had a few weeks of gifts and thoughts from others. I have received cards, flowers, and knit hats sent from some friends and family. Plus, I went out for a girl’s lunch where it was great to get out of the house and enjoy good company. These things were unexpected and all nice! I have a lot of things to be thankful for - and I am!!

Before the last chemo treatment, I met with a Genetic Specialist to discuss testing. I got to learn a little about breast cancer, genes, and genetic testing. Only 5%-10% of cancer is genetic, so the likelihood mine being genetic was very small. From what I was told, most people get spontaneous cancer - with the emphasis on "most". Seems they are learning and researching about cancer and finding out stuff about how it works. They hope these tests and research will lead to better testing in the future.

Test my genes!

In some ways my youth was on my side again – insurance will cover the cost of the genetic testing because I am still in my 30's. Apparently breast cancer in the 40's was considered way too young, so me in my 30's was super young. My insurance covers the cost if you are under 45 and if you have met your deductible – which of course I have now. The cost for the test was somewhere over $4000 – WOW! Who can afford that stuff without insurance? Its amazing that one blood test can cost so much. But then again nothing about Cancer or anything medical was cheap.

So, now I am 3/4 done with AC Chemo… only one more next week. Sweet! Then I will have the weekly treatments of another type of chemotherapy. I will be happy to check the AC Chemo off my To Do list! I am hanging in there and really learning the most I can from the experience. Plus, I am trying to laugh at the crazy things that happen along the way!!

In my head...

What can I do, but do. I just keep on moving and making my way through these treatments. Looking for as much humor in odd situations. Taking each lesson as it comes. I have the opportunity to make the experience as pleasant or unpleasant as I want. I choose to enjoy the ride, or as much of it as I can.

“Do," said Louisa finally, "whatever you can't not do.” 

― David Mitchell, Cloud Atlas

Episode Reference:   We are such stuff

As dreams are made on, and our little life

Is rounded with a sleep .

-Shakespeare, The Tempest (Act 4, Scene 1)