It's Chemo Eve!

I am so thankful to everyone who has offered to help me during chemo. There are a few things that I need to go over first. I will have several life style restrictions over the next 12 weeks. Please read through all of this to understand what's going on.  But that brings me to Stage 2 of cancer: Chemo. 

Let's talk about the basics on chemo. All of this information was new to me. I've never had another person in my family undergo chemo. The chemo info session at my doctor's office was very helpful. Here's the info in a brief summary.

• I will be on 4 cycles of treatment. I get a chemo infusion, a preventative shot to reduce my chance of infection during each cycle, then rest for 3 weeks. This happens every three weeks. Then I get a three week period after those to rest. After that, radiation begins.
• I cannot be around sick people. I have to avoid crowded areas too. Please do not visit if you have been exposed or are currently sick. My immune system will be susceptible and higher risk for illness while I'm in chemo. 
• The hardest period of recovery will be day 7-10 after treatment. Please bear with me if I ask you to visit or hang out with me, instead of me going to see you. 
• I cannot get vaccinations during chemo.
•  Do not clean up animal poop. (Yay, I don't have to clean up after pets.)
• Use Hand sanitizer everywhere.
• No hot tub or swimming pools.
• If have period better to use pads than tampons.
• All seafood and meat cooked. (No sushi, sadly.)
• Wash fruits and veggies thoroughly. 
• I have to avoid blood thinners: Advil, Aleve, ibuprofen, and aspirin brands. I don't count alcohol in that. I can't part with my wine.
• I must monitor my body for mouth/nose/skin sores, any unusual bruising, fevers and fatigue. Nausea is the least of my worries since all the medication I have to take should help deal with it.
• Hair loss begins on Day 14-21 of treatment. Hopefully the Cold Caps I am using will minimize it. Link to Cold Cap info. I may lose my eyebrows and eye lashes too.  (You risk losing hair in another sensitive spot, so at least I don't have to worrying about Brazilian waxing.)
• There is a strong chance that I will get early menopause. If I'm lucky, my period will return after chemo. There is a 60% chance it will not. That is where the egg harvesting/ retrieval will make a difference. Hopefully my period will return otherwise it means I cannot conceive a kid naturally.
• I will get hot flashes. 
• I will get muscle and major aches in my body.
• Any food I eat may taste like cardboard during and up to 3 months after chemo. I may have an increased sensitivity to certain smells.
• Brush teeth with 3-4 times a day. Use baking soda salt rinse to avoid mouth sores and thrush.
• I may get bloating, indigestion, gas, and heartburn after  I start chemo. Probiotics can help alleviate this.
• I may have increased sensitivity to sun. 
• I may have skin darkening in the creases of my skin. Nails can turn brown or gray. Goes away a few months after treatment. 
• Lymphodema can happen any time. This is a result of the sentinel lymphnode retrieval I received.  I cannot carry backpacks, lift bags, get blood drawn in my right arm for  the rest of my life. Or else it can make lymphodema appear at any time. 
• Long term peripheral  neuropathy. Numbness and tingling in hand, toes. That leads to complete sensation loss. It can go all the way up leg or arm in either side of my body. Sometimes it goes away in 6 months. Or it can come and go for the rest of my life. 
• And lastly, sex. It is OK to have it. BUT birth control methods must be used at all times to avoid pregnancy while the body undergoes the harsh chemo drug regimine.

It's a lot of info that I would never have imagined. I'm sure that you have heard about some of this already through family, friends or TV.   (You can read about my experiences 

The best way to help me is please offer to stop by and hang out with me. I won't be able to go out as much, so I would love to see you. Please text or Facebook me if you can make it over.  I'll send updates on my progress / timeline with chemo as I go along. Take care!

How to keep your hair at -32 degree C... Fighting the chemo battle

 In case you were not aware, I decided to use cold caps to prevent hair loss during Chemo treatment. Cold caps are expensive and not covered by insurance. Some initial medical studies show that it is 70% effective at preventing hair loss during chemo. There is only a 5% chance of developing skin (4%) or brain (0.5%) metastasise. This depends on the drugs that are used for chemo.  Cold Caps are used regularly in Europe but they are not approved by the FDA for reducing hair loss during cancer treatment, even though here is research from the past 10 years showing how effective they are. (UK National Institute of Health article showing effectiveness of cold caps. Recent article that covers info about current progress with getting Cold Caps approved.)

How do Cold Caps work? Based on the info from  Penguin Cold Caps, http://penguincoldcaps.com/how-it-works/:

Each Cold Cap weighs approximately 3 lbs (1.5Kgs). They are fastened using velcro and elastic straps to fit the cap tightly to the scalp. It does not restrict mobility during chemo treatment. The Cold Cap takes effect within 10 to 15 seconds. It must be put on dry hair and applied by a helper to the cancer patient.  The cold medical grade froze part of the cap is applied to the hair. The soft nylon blue outer cover is held by the cancer patient during cap placement. 

Penguin Cold Caps advises that the caps will start 50 minutes before the first chemo infusion. The caps are changed every 20 minutes during treatment (which can last 2 1/2 to 4 hours) and then every 30 minutes for the 4 hours following treatment. It must remain at a solid -32 degree C during the entire process. The caps are stored in the freezer during non-treatment days, put on dry ice the morning of treatment, and rotated on the dry ice during treatment day. There are very few treatment centers in the USA that have medical grade freezers to store the cold caps in. Penguin Cold Caps has a list. You can also talk to your treatment center to get a medical grade freezer donated from Project Rapunzel. The freezers are very large, and many treatment centers decline to accept a donation like that. This is why dry ice has to be used. 

They recommend that you practice putting the caps on before the day of chemo treatment. As scary as chemo is, I made it into a fun practice run with my Chemo helpers.

First, we spread out all the Cold Cap supplies. Check out my blog on chemo supplies.

Then we cut the moleskin to fit by tracing my forehead and cutting the moleskin to shape.

We put the moleskin on my forehead and panty liners--that's right panty liners-- on my ears and under my chin where the straps will connect. You don't need to use the ear covering but my hair is short so I put it there for good measure. My chemo buddy, hetero-life-mate and sister gazes at me in wide eyed wonder at the new use for feminine hygiene products.

Then time to put on the caps. The white part of the cap goes on my head while the blue outer shell goes on top. You place the chin straps on first, then velcro the front of the cap around the forehead. Then you velcro the back of the cap around the nape of the neck. A strap attaches with velcro around the nape of the neck and around the front of the cap to keep everything tight.

The cap has to be a very tight to ensure that it is effective. You can see my mom doing her "Rosie the Riveter" impression here.

And viola, cold cap fun with the strap on. My boyfriend insists that I look like a muppet, but I disagree. 

And then my sister joined in the fun. It's refreshing. The cold caps are not at -32 deg. C because they were just kept the freezer. 

All of this is from the practice run.  The caps are applied on the day of treatment by putting the caps into 100 lbs of dry ice 1-2 hours the day of treatment. The cap goes on 50 minutes before treatment.  

First the cold cap is removed from the storage container, white side up.  Knead the cap to loosen it up. You take the temperature of the center of the cap to confirm that it is 32 degrees Celsius. If it is too cold, knead it again to reduce some of the temperature and spread out the filling. Use gloves that are extremely thick to protect your hands from frost bite while working on the cap. The white side is the coldest part because it goes directly on your head. The blue part is not as cold. 

      

I had two people help me with the caps.  One person to change out the cap and velcro it in back. The other person to put the cap on, place my head in the center of the cap to hold it in place, and velcro the front. Then put the strap around the cap to hold it in place.

We timed the caps so that they were changed every 20 minutes for the first hour of my chemo infusion. Then changed it every 30 minutes during my infusion.After the chemo infusion, I had to keep changing the caps for an additional 4 hours,  every 30 minutes.  The cap must be kneaded every 10 minutes while wearing it. It's like a cold head massage.

You can see my mother concentrating on kneading my cap. We used a timer to remind us when to do each step.



And this is me during treatment. It gets pretty cold so I wore layers and brought plenty of blankets, hot water / tea, neck warmers, and a back warmer.  The nurses had a fantastic treatment to reduce the burning during the infusion. It's a sewn bag filled with brown rice. It is heated for a minute and put on the injection site. It reduced the burning significantly. I will have to make my own.

Shopping for cold caps...

This is a pretty comprehensive list of all the recommended blogs, sites and other places to go to get info on Penguin Cold Cap supplies. I have some helpful tips, lists, and links on this page. Thank you to all the people who helped share the information. It's a summary of all the information I've found to buy supplies for using Cold Caps. Think of it as a fun excuse to get warm and buy all the organic products you've dreamed of.  (Anything written as "Optional" are suggestions that may not have applied to me or I did not use yet.) Cheers!

TIPS FOR COLD CAPS

1.  Check out your home freezer size to make sure you have enough space to store all the cold caps. I live in a small apartment so I had to borrow freezer space from a friend to store the caps between treatment. The caps are about the size of a rugby cap, and there are a lot of them. There is no point in getting the caps if you don't have space.
2. Do a chemo info session at your treatment center to know how the chemo treatment will work with cold caps. Bring your Chemo Buddy with you for it.
3. Meet with the nurses that will do your chemo infusion. They will work closest to you during your treatment. It helps to know them before meeting on chemo day.
4. Practice “cold-capping” prior to your first infusion: The process of putting on the cap can take some practice.  It is better to practice before your first infusion in order to feel fully prepared and makes everyone more relaxed.  The goal is to be able to change the cold cap.  It can help to bring 2 people with you to handle the caps. One person to put the cold cap on; the other person to put the cold cap away.
5. Use a suitcase to carry supplies in: Pregnant women have their bags packed and ready before delivery, so why not do that for chemo?  It can help save space if you have to share a treatment room with other patients.
6. Use aluminum-free deodorant, a soft toothbrush, organic toothpaste without whitening or other chemicals of that sort in it, & alcohol-free mouthwash.
7. Hair care: Make the transition to these new hair care products as soon as possible before chemo starts, as it may take 2 weeks or more to fully clean old product residue off the hair.  Use a gentle shampoo with PH similar to that of the hair in the 4.5 to 5.5 range. Use clear shampoos, not "milky" or "creamy" ones. Wash hair no later than 3 days before and no sooner than 3 days after chemo. Do NOT use products that say moisturizing or volumizing, or that are opaque (rather than clear). Such products may coat the hair and keep oxygen from reaching the hair follicles.   Coloring hair is not recommended until 3 months after chemo is finished, because the follicles still need time to recover from the trauma of chemo.
8. Take your meds!  Follow instructions from your doctor and be sure to take medications before, during and after chemo. Include any medications for using cold caps in this list.
9.  Wear layers that open in the front during chemo day. It will be easier to change while the cold cap is on and chemo infusion is underway.
10.  Label the number of each cold cap box with masking tape.
11.  Keep hair straight down during chemo; do not bunch or pile on top of your head.
12. Don’t pull on the roots.
13. Hold hair when combing so not to strain the roots.  
14. Do not use brushes, curling irons, electric rollers, or hot air hair dryers.
15. Do not wash your hair more than 3 days before treatment. It's recommended to wash your hair only once a week using cold water only.
16. Part hair in different place each time you change cold caps. It helps avoid frostbite in each area each time the cap is changed.
17. DRINK AS MUCH WATER AS POSSIBLE DURING CHEMO DAY.
18. Use adhesive-backed moleskin (Dr. Scholl's), cut to the shape of the forehead, to protect skin when cold caps are on.
19. Trace your forehead with wax paper or parchment paper to cut moleskin to fit.
20. Have warm blankets, an electric blanket, or heating pads on hand to use, especially during and right after each cap change.
21. Sleep on a satin pillow case; this works best for longer hair.
22. Sit in a chair without a high back – otherwise working at the back of the head during cap changes is difficult.
23. Use a travel-type neck pillow to support your head/neck during chemo.
24. Find out if you can have lab work done the day before chemo, because this shortens chemo day waiting time considerably.
25. Find out if you can call in and request to have your chemo order sent up from the pharmacy before you leave home the morning of chemo – saving you up to an hour. Or find out if the infusion center can do the injection in their office.

Supplies For Chemo Days:

SHOPPING LIST (WHEN DRY ICE IS USED)

• Two square 60 quart coolers made by Igloo called the Ice Cube, (dimensions 16” x 14” x 17”); cheapest price I found was at Lowe's.
•  Dry Ice: A total of 100 lbs of dry ice in slab form (60 lbs for each cooler in slab form and 40 of pellets). Penguin Cold Caps says (40 lbs for each cooler in slab form, each slab 12” square, around 11/4” thick weighing 10 lbs each).  DO NOT put caps on dry ice until the morning of treatment. See Penguin Cold Caps instructions for details. 
• 2 Gallon Ziploc bags (for the dry ice pellets) or whatever the largest size is.  Put the dry ice pellets in them, but you do NOT close the bags or they will explode from the vapor as the ice "melts".
• Dry ice suppliers.  Penguin Cold Caps can recommend places on their blog. Ask for a discount price by mentioning your medical situation.  Check the Penguin Cold Caps forum for suggested suppliers or ask your infusion center if they recommend a supplier.
•  Gloves (for handling the dry ice). Important: Please read the dry ice safety instructions provided by the dry ice supplier.) Sometimes Gloves are carried at the dry ice supplier. Ask before you go in to get the ice.  Or, you can use thick gardening gloves. Dry ice can also be delivered. Ask the supplier what options they have.
• Safety glasses (for handling dry ice).
• Infra-red thermometer (that goes down to at least -45 degrees Celsius), and back up batteries. This item can be found on Amazon or Ebay for best price. Please note this is not the usable temperature of the caps.
• A timer - for timing cap changes. A timer on your phone works too.
•  Alcohol wipes - Use to remove the moleskin adhesive and to clean the cold caps as needed.
• Moleskin - to protect on your forehead (can be purchased from most drug stores and Targets). Cut it to shape and so it fits your forehead right to a sixteenth of an inch from the hair line. Extra thick moleskin is the best way to go for better protection.   I pre-cut the moleskin to fit on my forehead and temples. It keeps the cold off of my skin while wearing the caps at the treatment center. If the moleskin is thinner, double the layers. Moleskin can be found at Walgreens, Amazon, or Target. Dr. Scholls rolls work well.
• Panty liners - Fit and cut them to fit the shape of my ears while wearing the cold cap. You can also use them to fit between your chin and the cap strap.
• Hair pick or large tooth comb - I made sure to lightly comb through my hair and change my hair part every time a changed my cold caps.  This prevented me from getting any frostbite along my part line.
• Thick blankets & Electric heating pad - Borrowed from a friend. I wrapped it around myself all day to stay warm.
• Wash cloth or towel--- to wipe off the cold cap after use.
•  Scissors (in case I needed to cut more supplies) 
•  Masking tape (just in case you need to reapply tape to label each cold cap box).
•  STRAWS: Makes it easier to drink water while you have a cold cap on.
• HAND SANITIZER: Stay healthy. My immune system is lower because of the chemo treatments. I bring this with me every where.
• Optional: Ativan (I asked my medical oncologist for a prescription) - It helped keep me calm and helped me tolerate the cold while wearing the caps.
• Optional: Extra Strength Tylenol - Some people experience headaches from the cold. Take before putting on your first cold cap and follow directions for use.
•  Optional: Hair Cap, found at wig stores, to wear under the Cap to help prevent hair from being caught in the Velcro. It's recommended but not needed. It can be very helpful if you have long hair.
• Optional: I found this on another website. You can use socks, knit gloves and sandwich baggies - I decided to ice my fingers and toes during taxotere to avoid neuropathy.  I brought a small bag of ice with me to treatment.  I put my foot on them and then folded half of the baggy up over my toes to keep my nails and toes cold.  For hands, I put on my gloves, put a  baggy full of ice in each hand, folded my fingers into it. Then my buddy made put a sock over my hands/forearms, keeping the ice in place so I didn't have to hold the bags the whole time.  

Supplies to Have At Home:

• Hair pick or wide tooth comb - no use of hairbrushes while going through this.
•  Organic Shampoo/Conditioner - I wanted to avoid parabens, sulfates and as many chemicals as possible.  I used Whole Foods brand shampoo and conditioner. It's easy to find and cheap. Another option is to use a detangling spray, such an organic spray-on conditioner, rather than a regular conditioner. Again this helps keep the hair follicles from being coated.
•  Thin, soft elastic or cotton headbands - I used these to just keep the hair out of my eyes.  I got them at Amazon or Target at a cheap price.  Best part: gets delivered direct to my door.
•   Deodorant - Penguin Cold Caps recommends you use organic, chemical free and aluminum free deodorant while using cold caps.  I used Tom's. You can find it at any Whole Foods.
• Organic toothpaste and soft tooth brush - Biotene mouthwash and toothpaste are great, but can be costly. Ask your dentist to see if they can get a free sample. Or check out Tom's or another brand of organic toothpaste without harsh whitening or other chemicals in it. Use a soft toothbrush to brush your teeth. My doctor recommended to brush my teeth 3 - 4 times a day. Use alcohol free mouthwash. Use a baking soda & salt mixed mouthwash daily to prevent mouth sores.
•    Organic and Chemical Free Hair Styling Products - Penguin Cold Cap's probably does not recommend use of these items but for special occasions. I used Giovanni hair styling products to get the frizz under control.  You can find it at Whole Foods.
• Optional: Hair products
• Thick Cotton Headbands - Penguin Cold Caps does not recommend the use of them, but they can help cover roots as my hair started growing out towards the end of chemo (my roots were at least 1 1/2 inches long as my hair continued to grow at a normal pace through chemo!). 
• Soft Covered Elastic Hair Rubber bands - the Penguin Cold Cap website does not recommend using hair rubber bands but I did.  I exercised daily and had long hair.  I was very gentle with my hair when I used them and made sure not to put them in tight or pull on my hair when removing them.
• Optional: Hair Extensions - I had some clip in real human hair extensions I got at a local beauty supply store.  I know Penguin Cold Caps probably does not recommend the use of these, but I did use them towards the end of chemo and after chemo when my long hair looked thinner at the ends.
• Optional: ColorMark is great for color touchups. The wand or TouchPoint (magic marker size) can be used. It washes out but does not damage your hair.  

• Optional: Microwaveable Rice-pack/bean bag, electric heating pads, or electric shoulder warmers. Use the Microwaveable Rice-pack/bean bag for neck and/or body.  for your neck and/or body to help keep you warm and support your neck. These can be homemade or bought at Whole Foods, in malls, or online. There is a microwave for patient use in the infusion center.
•  Optional: Handheld Shower Sprayer - It can attach to a bathtub faucet to get water over hair only, instead of taking a cold shower. Use to wash hair once a week as recommended.
•    Optional: Latisse: Requires a prescription, and can be expensive and not covered by insurance. Eyebrow and eye lashes may not fall out until after. It is probably best to start using it after finishing chemo. 

Websites:

Penguin Cold Caps: http://penguincoldcaps.com/

This blog has some informative tips to use for cold caps. I like my list better though. :)

http://breastcancerwontdefineme.blogspot.com/2012/01/tips-for-using-penguin-cold-caps.html

Video on how to place the cold caps: http://www.youtube.com/watch?v=m87LHfAYf9E&desktop_uri=%2Fwatch%3Fv%3Dm87LHfAYf9E&nomobile=1

Tips on cold cap use and supplies from Project Rapunztzel, the fantastic non-profit that will donate a freezer to your clinic for cold cap storage. http://www.rapunzelproject.org/ColdCaps.aspx

Suggestions on how to use cold caps from breast cancer survivors. http://community.breastcancer.org/topic_post?forum_id=6&id=786991&page=1  or http://community.breastcancer.org/topic_post?forum_id=6&id=735873&page=1

Count down to chemo...

Here's the latest. I start Chemo on Aug. 29, next week. I pulled in Chemo by one week so that I could coordinate with my work schedule / travel in October. That means there is a huge check list of chemo, cold cap and information to go through.  Then there is the 2nd round of egg retrieval. I will wrap that up less than 48 hours before I start chemo. There are a whole bunch of legal documents to complete for egg storage, insurance approvals... It just doesn't seem to end. 

I will definitely send requests for help with stuff as things get closer. Stay tuned. :)

Movie ideas...

I stumbled onto some great movies about the cancer experience. I was surprised to find that there can be some funny, and moving but at times tear-jerker, films out there. They do a fantastic job of depicting an individual's cancer journey. I'm still looking at one from a woman's perspective, but not one that is depicted by Samantha in Sex in the City.

50/50 - Joseph Gordon-Levitt does a phenomenal job showing all the stages of going through cancer. It's inspired by a true story too. 

Not Suitable for Children - Ryan Kwanten, the actor who plays Jason Stackhouse in True Blood, plays a man in his 20s, just diagnosed with testicular cancer. He tries desperately to find a woman to have a baby with in less than a month. It's a funny, and a romantic comedy of sorts.

Hope you enjoy them as much as I did. Cheers.