Put on a Happy Face

I have found my happy place again. Not sure how long I'll get to reside in this mindset but I will enjoy it as long as I can.

The weather has changed and I am occasionally wearing scarves and hats indoors. Yesterday I played with my Rachel Welch wig and decided it would make a good furry hat if I can only figure out how to keep the bangs out of my face. How did I deal with long hair pre-chemo? I cannot remember but now I don't want anything in my face. 

My eyes are bugging me. Super dry. Sometimes I feel like my lids are sticking to my balls (hehehe... she said balls). I'm an eye drop addict. I broke some blood vessels in my left eye. Looks weird but I'm not too concerned. People can break blood vessels in their eyes by just sneezing. I probably did it blowing my nose. My sinuses feel jacked up and I get a bloody nose at least once a day so there is a lot going on in eyes/nose zone. 

Yesterday I received a phone call from a Wells Fargo customer service rep asking me about my experiences visiting my local branch. I KID YOU NOT! I was able to relate my stories about overly chatty tellers while stating that I understood they are trained to be friendly and up-sell at every opportunity (see previous post for the full story). All I ask is they read my body language. When a bald, sick looking person comes in and does not engage they should read the customer's body language and act accordingly. The CS rep was totally understanding and it felt good to report my experience. The timing was uncanny and I got a slightly creepy feeling that "big brother" was watching. 

I'm planning on going into the office on Tuesday. I should probably wait until I get my final blood counts but there will only be a couple of people there so it doesn't feel too risky. I'll check in to make sure no one is feeling ill just before I leave the house. 

I'm looking forward to establishing a new routine. Remember nap time in kindergarten? We should incorporate that back into our work week.

Chemotherapy and Mood (ANGER)

I did a search for scholarly articles relating to chemotherapy and anger. My search returned pages of results, however, after digging deeper it appears there is a researcher out there with the last name Anger so my search was totally bogus. Now I'm pissed. Again.

You know what else pissed me off today? The bank teller at Wells Fargo (again).

Teller: What are your plans for the day? 
Me: Nunna
Teller: *tilts head like a dog*
Me: Nunna Business

Teller: Have you been in this branch before?
Me: *Nods head*
Teller: I don't think I've had the pleasure of meeting you before.
Me: *blank stare*

Teller: Is this your home branch?
Me: Yes, I don't know.

Teller: blah blah blah blah
Me: *Turns and stares out window into parking lot*

Seriously she went on and on with the questions. What? Do they train them to ask these questions? READ MY BODY LANGUAGE! I don't feel like chatting. I'm a bald woman in a bad mood just count out the cash and no one will get hurt. Then on the way to my errand I has two road rage incidents. Well rage is a pretty intense word but I did feel my blood get hot and I used the bird in one instance. Totally justified I assure you. 

So I'm pretty sure I have anger issues. Which feels good and bad all at the same time. Good because I don't have anger in my normal state and it feels like a release to let it flow but bad because I am experiencing these flare ups and I prefer being in a relaxed-go-with-the-flow mood. 

The complaint list:
I am tired. My hormones are unstable. Sleep disturbances are routine. When I see my reflection it reminds me of Darth Vader without his helmet on. When I try to read all I do is reread the same paragraph. I feel isolated. I'm anxious about returning to work. I'm road kill by late afternoon. The list goes on...

On the upside... ya right, you really think I'm going to go all Polly-Anna right now? I'm on the downside and I am embracing it. 

What was my errand you ask? A visit to the medical marijuana dispensary. I bellied up to the bar and asked for their best mood elevator. I told them that I was at the end of my treatment and needed something to relieve nausea and anger. They were understanding and acknowledged that treatment wears you down and it is normal to feel the way I do.

I came home with a little bag full of things to try and a slightly better mood for having someone tell me it's okay to feel the way I do. 

Cognitive Rehabilitation Improves Brain Function in Cancer Survivors

http://www.washington.edu/news/2013/09/19/cognitive-rehabilitation-improves-brain-function-in-cancer-survivors/

Infusion 4 of 4

Last Thursday was my final infusion. Infusion day isn't that bad. I get 3 different anti-nausea meds that hold me over for a few days and my chemo buddies are a great distraction from the fact that poison is being pumped into my body. 

They had a little trouble accessing my port and ended up injecting an enzyme that breaks down fibrous tissue that collects at the end of the port-a-cath. See Infusion 1 of 4 for more info regarding port-a-cath.
 
My blood counts are great and I've been given the status of Gold Star Patient. No actual gold stars were given.

It's been 24 hours and I feel pretty good. Taste buds have gone dead, sleep patterns are all messed up, and I'm slightly dizzy due to the steroids. Also, I am having some trouble regulating my body temperature but that is most likely due to fluctuating hormones. 

It Has Gone By So Fast. Barf. Pow!

When I tell people when my last infusion is many of them say with enthusiasm, "Wow! It has gone by so fast!"

Yet for me it has been dragging on. Some moments have been in slow motion. Some days are cut up into units of time marked by medication, nausea, sleep, snacks, television shows, showers, barfing...

Tomorrow is my last infusion. Each one has been different. This last one brought the nausea. Lots and lots of nausea. At the start of week three (the good week) I barfed. I FUCKING BARFED! I hate barfing. As I was barfing I kept thinking... is this really happening? Week three and I'm barfing?

This whole process is wearing me down mentally. I'm impatient and critical. My internal dialog is nothing like my external dialog. I've been using little tricks to keep myself in check. It's sort of like when you get nervous before giving a presentation and imagine the audience in their underwear. 

For example:

• A few days ago someone said that they were praying for me. I mentally decapitated them.
• Facebook friends that complain about their jobs, the weather, or the government have all been hidden. 
• The bank teller that asks what I am up to this afternoon only receives the death stare. (Look we both know she is only trying to up-sell me so if you sit in judgement you can climb down off your high horse right now.)
• The know-it-all clown that declared the latest Star Trek movies as full of war, fist-fighting, and explosions and not keeping to the true essence of the original series received a mental smack down that Khan himself would have been proud of. 
• That friend whose husband keeps acting like a jerk has been tied to an imaginary post and screamed at like a drill sergeant.
• Don't even get me started on the neighbors with the barking dog!

Generally I am a mild mannered person and not at all violent, loud, or quick to judgement. The barfing brought it out in me. Or maybe... I am all of those things and the chemo is allowing me to purge these traits along with the contents of my stomach. 
 

Horse Tail

You know how horses use their tails to swat away flies? I used to use my long hair in the same manner. Now here I sit outside with a bowl of cut up watermelon enjoying the last dregs of summer and a pesky fly is annoying me. Said fly dive bombs my face and I intuitively snap my head to flick the fly away with my hair... except there is no hair and I feel momentarily silly. 

Pickles

I found a pickle in my fridge that I can actually taste. I bought them in June after I read this article in the Smithsonian magazine about Why You Like What You Like. In a nut shell: A psychophysicist and food industry consultant, was asked by Vlasic Pickles to crack “the pickle code.” Losing market share to Claussen, the Vlasic executives wanted to know: What kind of pickles did people really want?

• Smithsonian Magazine: June 2013
  
  
  
  

Although the pickles were a little too zesty for me pre-chemo, this time around it was like discovering heroin! 

 

LEGO Pain Assessment Tool

Click to Enlarge

Infusion 3 of 4

Thursday was infusion #3. Entering the home stretch now. 

First stop, blood draw.
It was unusually busy compared to my first 2 infusions. There was a wait to get my blood drawn but that was okay because once I was in we had quick success with the blood draw as I assumed the position that worked best on infusion #2. 

Next stop, Oncologist. 
Not much of a wait here. We spent the first 30 min just shooting the breeze and talking about family and the fascinating life of his brother, the federal judge, spurred by my questions on how judges are selected for cases and what type of protection is needed for high profile cases. He could have talked about it for hours and I could have listened for hours.

Then I busted out my PAX vaporizer and showed him the latest technology in delivering THC from marijuana. For more on medical Mary Jane see my July 22nd post.

Last stop, chemo lounge. 
The waiting room was packed! There was quite a wait and the other patients were chatty. Lots of questions and comments directed at me, mostly spurred on by my fading Mohawk. 

Finally my name was called. It was so busy they gave me the option of using a private room with its own bathroom. Although I liked the spots near the windows the only one available had a large post blocking most of the view so I choose the private room. Having that bathroom was a perk and when my chemo buddies went out to grab us some lunch I didn't feel bad about eating my piroshki that was hot and smelled so good. Normally I wouldn't do that because I am conscious of the smell affecting the other patients. Private room kept the smell of our lunches contained.
 
My blood levels were good as reported by my oncologist and the ooh's and ahh's I got from the nurses in the chemo lounge. Those nurses are rock stars. I brought them them a local treat, Almond Roca, and they were just cute as can be hugging the container and offering many thanks.

We found out the nurses have a little thing on Thursdays. They all wear pearls. So next time my chemo buddies and I will wear pearls in solidarity. 

At home now:
It has been two days and I feel tired but happy. I am off to a good start for what is supposed to be the worst week. Taste buds went dead by Friday morning so it's all about texture and staying hydrated until the buds start to wake up again in week three. Meanwhile I torture myself by watching cooking shows. I love food porn. 

Sleep has been eluding me but that is due to the Dexamethasone I take before and a few days following infusions. This is temporary though and I look forward to naps.

Upcoming post:
I have been researching the history and evolution of chemotherapy. My attention span is best in the morning so I try to work on it a little everyday. It has been fun and I look forward to completing it.

Everyone Poops

Last week was a white knuckle ride that will be used as a ruler to measure how bad things can get.

Chemotherapy damages healthy cells in the lining of the digestive system. Your whole digestive system can be affected. The digestive system extends from the mouth to the anus and includes the salivary glands, stomach, intestines, and rectum.

Everyone poops. If you don't poop it is bad. If you over-poop it is bad. Either of these situations can make you cry and not only cause damage to your pooper but also your psyche.  

• Everyone Poops as read by Morgan Freeman

I could go on and give fascinating details but now that people I know are reading this blog I would rather they not be all "up in my shit".

Mouthing Off

Chemotherapy kills or slows cancer by interfering with cell growth processes in all rapidly growing cells. Cancer cells grow at an uncontrolled rate, even faster than healthy cells in the body (hair, nails, skin, blood, and mucus membranes) that are supposed to grow quickly. The mouth and digestive system are made of cells that normally renew themselves at a fairly swift pace, and this makes them susceptible to temporary damage by chemotherapy. 

Dysgeusia (a change in the sense of taste) is one of the side effects I am experiencing. Everything tastes like cardboard. The exact mechanism of chemotherapy-induced dysgeusia is unknown.

Taking care of my mouth is a part time job. Kat's Survival Kit tips:

• Brushing teeth & tongue often with Ultra Soft toothbrush 
• Biotene toothpaste & mouthwash (designed to help relieve oral symptoms of dry mouth)
• Very gentle/careful dental flossing 
• Baking soda rinse
• Sucking on ice during infusions
• Sipping water often

Infusion 2 of 4

Yesterday was my second infusion. Two down. Two to go.

Start Time: 9:45 AM 
 
First thing I do is go to the blood lab. They had a little trouble accessing my port, however after trying several different positions (sitting up, leaning forward, laying down, leaning forward with one are up and head turned) we finally gained access. The last resort would have been to inject an enzyme that breaks down any fibrous tissue that has formed and wait an hour or so then try again. Modern medicine is cool! 

Second thing I do is go see my oncologist. He is awesome, his staff is awesome. I reported on my last three weeks he told me my blood counts were great then we moved onto non cancer related topics. He's a prolific photographer and has hung several of his images in the office. There is a Seattle skyline image w/ an orange sky that would look perfect in my home. Although he spends the majority of his day accessing a computer he is not a techie gadget guy and I'm going to try and convince him to get an iPod. He is resistant. Next infusion I'm bringing in my PAX vaporizer and showing him the latest technology there.

Last thing I do is head to what I have dubbed the Chemo Lounge. They access my port and I show them the lean way forward, one arm up, head to the side trick... boom... we have access. I can sit up for the rest of the infusions. We start with popping a benedryl and three anti nausea meds, then comes the first chemo drug Taxotere followed by a port flush and second chemo drug Cytoxan. I believe it ends with another saline flush and maybe some heparin. By this time I'm feeling tired and unfocused. 

End Time: 3:15 PM

Side note: Now that my hair is falling out and I am easily recognized as a Chemo Girl I am part of a club. Other patients give me the knowing nod, smiles, and some even approach to chat. The nurses & hospital staff gave a lot of positive feedback about my hair. Friends/family also giving me lots of love about the new do. I started sharing my blog (reluctantly) yesterday. Last thing I want to do is bore anyone. I had a boss once who told me his biggest fear was being boring. I related to him completely.

Chemo Punk

The Upside of Chemo

• Free Brazilians
• Guilt free naps
• Medical Marijuana 

This Just In: Cold Caps Tested to Prevent Hair Loss During Chemo

 

  http://www.nydailynews.com

Medical Mary Jane

Mild nausea set in on Saturday (day 9) and I found immediate relieve smoking a little bit of weed. 

There are several subtypes of Chemotherapy-induced nausea and vomiting (CINV). The classifications of nausea and vomiting are:

• Acute: occurring within 24 hours of chemotherapy

• Delayed: occurring between 24 hours and 5 days after treatment

• Breakthrough: occurring despite prophylactic treatment

• Anticipatory: triggered by taste, odor, memories, visions, or anxiety related to chemotherapy

• Refractory: occurring during subsequent cycles when antiemetics have failed in earlier cycles

I would classify mine as delayed and/or anticipatory. 

I live in a state where medical marijuana is legal. I have been issued a prescription by my oncologist, along with a tongue in cheek warning that his brother is a federal judge. 

I experienced my first visit to a local medical marijuana dispensary and it was pleasant. Nick was kind, attentive, patient, and full of good vibes. I selected two products: Huckleberry (indica) & Snow (sativa). A gram of each. The perfect sample amount. I also chose a few edibles. 

• Indica use creates a “couch-lock”, I-don’t-want-to-move-a-muscle type high. Using indica is a great choice for those nights indoors watching TV, playing video games, or just chilling with close companions. The indica high numbs the body down and induces an overall sense of relaxation, which is ideal for a relaxing night’s sleep. 
• Sativa use produces more of a mental, cerebral high, which often results in a boost in energy and imagination. Sativa strains are perfect when working creatively in activities such as writing, painting, and brainstorming new ideas. Sativas are also a great choice for enhancing the experience at artistic events like movies and concerts.

Similarities:
One of the most well known similarities between the indica and sativa strains is their ability to relieve nausea. Medical marijuana is a popular choice in people who are afflicted with HIV/AIDS or are currently enduring chemotherapy. These 2 situations are notorious for causing severe episodes of nausea, which can be effectively eliminated with the introduction of THC into the system.

Increased appetite is another well-known benefit to people who have a difficult time eating and staying nourished. When an individual is recovering or weakened for long periods of time, it is especially important that their body receives proper nutrition. Possessing a strong appetite could be the biggest difference between positive well-being and persistent sickness.

Whether it is an indica or sativa, these two medicinal benefits will surely be available. 

Differences:
Noteworthy differences between indica and sativa are their abilities to relieve pain and insomnia. While both strains can achieve these effects to varying degrees, indicas tend to be more valuable in treating issues related to the body while sativas address problems of the mind.

Individuals suffering from chronic pain and afflictions such as Multiple Sclerosis or fibromyalgia will most likely find indicas are more potent for reducing pain levels. Indica serves as a great analgesic.

Insomniacs will most likely find that indica is an ideal solution. Under the effects of indica, users will definitely feel drowsy, tired, and have a strong urge to fall asleep. For someone who can’t bring themselves to rest, this effect could be nothing short of a blessing.

Sativas on the other hand are superb at addressing conditions like depression. Those who suffer from depression and take prescription drugs often suffer the unfavorable side effects. Cannabis sativa can put the user into the greatest of moods with virtually no negative effects (especially if vaporizing).

Some studies have also shown that sativas are capable of treating the symptoms of ADHD. At first glance it almost seems counterintuitive, but some ADHD sufferers say they can only focus when high on a sativa. 

Physical differences:
The best way to tell whether a marijuana plant is sativa vs indica is to look at the plant itself. Sativas will tend to grow taller and stalkier while indicas will tend to be shorter and bushier.

The plant’s leaves are also a very clear indication of which family it is a part of. Indicas have wide, fat leaves whereas sativas have narrower, finger-like leaves.

Delivery Method: 
Whether it is an indica or sativa, the most efficient and effective way to extract THC from marijuana is through the process of vaporization. Vaporization is an ingenious process that heats marijuana to an optimal temperature just below the point when it would start to burn. At this temperature, the THC will be released into the air through vapor rather than smoke. The result is hits that are 90% THC or more instead of the usual smoke which is often less than 20% THC, filled with carcinogens, and harsh to both the throat and lungs. 

Another key benefit of vaporization over smoking is the strength of smell. Smoking causes marijuana to burn releasing toxins and oils into the air. The fumigation of these chemicals and essential oils is what gives marijuana its strong and distinct smell.

Because the only goal of vaporization is to release THC, virtually all of the odor-causing agents inside marijuana remain within the plant and are never put into the air. THC by itself is odorless, it is the other components of marijuana that give off the powerful odor. If discretion is of major concern, vaporization is a convenient solution.

The iPod of Vaporizers:  
So what did I end up purchasing? The PAX, a pocket-sized, rechargeable vaporizer designed in San Francisco by Ploom and manufactured in China. 

Read the review in Wired magazine: http://www.wired.com/reviews/2012/08/ploom-pax

Bones

I have been experiencing bone pain. Yesterday it was downright medieval. The pain is the result of the drug Neulasta which was given to me after my first infusion (one week ago today).

White Blood Cell

Neulasta is a protein that stimulates the production of neutrophils, a type of white blood cell that is depleted during cytotoxic chemotherapy.

Neutrophils are the most common type of white blood cell made in bone marrow, comprising about 50-70% of all white blood cells. They are phagocytic, meaning that they can ingest other cells, though they do not survive the act. Neutrophils are the first immune cells to arrive at a site of infection, within an hour, through a process known as chemotaxis. They are fast acting, plentiful, and responsible for the bulk of an immune response.

• Neutrophil chasing bacterium

This increased white blood cell production has caused a change in my bone marrow pressure and inflammation. I've been prescribed Clariton D, an antihistamine, that in theory reduces inflammation.

• Understanding your complete blood count

The Whole Foods Incident

It's been four days since my first infusion. I've been getting out of the house everyday for a walk and fresh air. Today we headed to the drug store then stopped at Whole Foods to look for organic brown rice vinegar to make some Avocado Dressing from The Cancer-Fighting Kitchen cook book by Rebecca Katz. This step-by-step guide helps patients nutritionally prepare for all phases of treatment, and is a remarkable resource for teaching patients and caregivers how to use readily available powerhouse ingredients to build a symptom and cancer-fighting culinary toolkit. 

After the ingredients were located we decided to grab a snack and eat it onsite in the cafeteria area. A few bites into my snack it hit me... uh oh... what's going on? My world started closing in and I pushed away the food. I continued to attempt an assessment of what was going on as my sister, always in tune, snapped to attention and asked if she should get a to-go box. I nodded and she quickly darted off like a ninja and had us packed up and headed toward the door in mere moments. A cold sweat broke out on the back of my neck and I concentrated on breathing as we walked to the car. As I climbed into the passenger seat I was already feeling better but we sat there with the air on full blast just to be certain. 

I survived my first chemo sneak attack! 

Infusion 1 of 4

Yesterday was my first infusion day and it was a long day that started with a port placement. The port-a-cath is implanted under the skin and is designed to permit repeated access to the venous system.

The system consist of three parts: 1) The portal - which is a small titanium chamber, sealed at the top with a septum made of self-sealing silicone 2) The catheter - a thin, flexible tube made of polyurethane 3) The catheter connector - a component that connects the catheter to the portal.

The port-a-cath has a variety of uses however in chemotherapy it is used to administer the drugs into the body and to withdraw blood to carry out other tests. After every procedure, the port is flushed with saline and then diluted heparin is injected to prevent clotting of blood.

After the port placement my chemo buddies and I went to the cafeteria for a bite to eat. Then we stopped in to see my oncologist before heading over for infusion #1. It wasn't horrible and everyone we encountered were not only professional but some were downright entertaining.

• Side effects: minor fatigue, dry mouth, watery eyes, interrupted sleep due to increased fluids and trips to the bathroom during the night.

• Mood: good, focused

Out of Office

Last day at work for a while. Need to set an out of office message. Hard to find appropriate message that truly conveys my sentiments. 

Note to Self

Girl, you've been forgetting
Just how special you really are
And I try to remind you
Sometimes I can't find you
But the truth is in your heart
 
So write a note to yourself
 
Girl, don't beat yourself up
Your best is good enough
So pick the pen up
 
And write a note to yourself,
a note to yourself
And don't be cruel,
cause things do happen
And you know it's not your fault
Don't cover your wounds with the salt
 
Girl, let me tell you what I see
You've got to believe me
You're a thing of beauty
 
Girl, put it in an envelope
Put it in the post
It'll come back to your door  
And read the note to yourself,
Note to yourself
And don't be cruel,
cause things do happen
And you know it's not your fault
Don't cover your wounds with the salt

And write a note to yourself
And read the note to yourself.

-Jake Bugg

I'm Not a Saint. You're Not a Saint.

Recently someone said to me, "I'm not a saint. You're not a saint." It was in the vein of... hey I know you are going through a lot here and in the near future you could be significantly compromised so let me know, don't make me guess where you are at. It's okay to say I can't do something. I'm not a saint - neither are you.

This individual is one of those smart, good humored, high achieving, keeping it real types. I appreciated the candor and it stuck in my mind for days causing me to consider this statement as a concept. 

I'm not a saint. I do not possess an exceptional degree of holiness, sanctity, and virtue. I consider myself a good team player, truly forgiving, and I will often go the extra mile but don't misinterpret that as a push over or someone that will always turn the other cheek. I'm not that good. 

Having cancer again has put an edge on me. It has made me less patient, more critical, and mentally fatigued.  

So please forgive because, I'm not a saint - neither are you.

Chemo Brain

How is it that I have had cancer three times and I have never heard of post-chemotherapy cognitive impairment (a.k.a. chemo brain)?

According to wikipedia approximately 20–30% of people who undergo chemotherapy experience some level of post-chemotherapy cognitive impairment. The phenomenon first came to light because of the large number of breast cancer survivors who complained of changes in memory, fluency, and other cognitive abilities that impeded their ability to function as they had pre-chemotherapy.

Recent studies have confirmed that post-chemotherapy cognitive impairment (PCCI) is a real, measurable side effect of chemotherapy that appears in some patients. While any cancer patient may experience temporary cognitive impairment while undergoing chemotherapy, patients with PCCI continue to experience these symptoms long after chemotherapy has been completed. 

The Mayo Clinic lists the following signs and symptoms of chemo brain:

• Being unusually disorganized
• Confusion
• Difficulty concentrating
• Difficulty finding the right word
• Difficulty learning new skills
• Difficulty multitasking
• Fatigue
• Feeling of mental fogginess
• Short attention span
• Short-term memory problems
• Taking longer than usual to complete routine tasks
• Trouble with verbal memory, such as remembering a conversation
• Trouble with visual memory, such as recalling an image or list of words

I Just added kindle edition of Your Brain After Chemo to the survival kit!
 

I Heart DIY

I am starting Chemotherapy in less than a month. 

I love a good DIY project and am currently custom making a survival kit. 

Shit just got real.

Kat