Surviving: Chemo and cold caps done. It's wrap up time.

I survived chemo. I can't believe that I made it through. I've heard that chemo can be more difficult than radiation. I was prepared for the worst. I was lucky that I did not get all the side effects that many patients experience. So here's the best and the worst of chemo. I'm going through radiation right now. Here's the link to the info for my radiation journey. 

I went through 4 cycles. That's four rounds of chemo with three weeks between each round. Before my day of chemo, I got my dry ice for my cold caps. I made sure that my suitcase of cold cap and chemo supplies was packed, and ready to roll. Next morning, I met up with my family to grab the coolers and supply suitcase. We headed over to the oncology clinic, then I had my blood checked one hour before treatment. If everything looked OK, then I was off to get my chemo started. I had to start my cold caps immediately while I received a pretreatment medication. The pretreatment ensured that I did not get a fierce reaction to the chemo drugs I received.  Then I received the chemo via IV. Each session took three to four hours, depending on how easy it was to find a vein to use for the IV. Click this link to view my review of the first 6 weeks of chemo. 

  

This a photo of how it looks after the treatment started. What helped a lot was a heated bag of rice that the nurses put over the IV. It reduced the burn as the drugs were administered on the IV.  

The cold caps had to be prepared by having one person take the storage container out of the cooler and storage box, don thick gloves that protect from the freezing dry ice, check the temperature to make sure it maintained at -32 Celsius at all times, then open it up the cap, knead it, and fit it to my head. You can see the step by step photos below.

Once it was strapped to my head, headbands wrapped around my head to keep the cap secure and tight. You can see the bands in the photos of me in the chair. The caps are changed twice an hour during treatment, then for 4 hours after treatment. That meant the entire day takes about 8 to 9 hours to complete the chemo and cold caps. The next day I received a stimulant injection to push my body to make more white blood cells. Then I spent the next 4 days resting and surviving the results of the 

The hardest part of chemo treatment was experiencing how cold the cold caps were; to say it was extreme is an understatement. The first 4 times the caps were changed were the worst. Then I started to get used to them. You can see in the photo of me above that I'm grimacing because I'm so cold. I look slightly out of it too. I was able to take some medication to help mitigate that. I'm just happy that I faced it head on and survived it. We'll get to how successful the cold caps below.

Apparently, I handled it exceptionally well. I lucked out with not experiencing all the side effects. My doctor, friends and family tell me they are so proud of me. But there was a huge emotional toll from the chemo and cold caps. I tried to find the humor in it. My sister and mom got me a Wonderwoman snuggie I could wear during chemo. I had my special supernova shirt I wore under my multiple layers of clothing. I didn't have a cape, but I still went into superhero mode. 

  

 

I wore my "toxic" shirt while I was under the IV and the cold caps. Then I took the shirt off at the end of the day. The photos of me below are from my very last day of treatment on Halloween.

I got to celebrate the last day of chemo with my man.(We dressed up as Wednesday and Pugsley from the Adams Family.)  I was so happy to be done. I couldn't wait to return the cold caps so I could start radiation after that. I figured I still had my hair, and I had not shed too much so I was in the clear. I had heard from people that radiation was much easier. But comparatively speaking, chemo took a toll on me. 

Every three weeks there was a set routine. It was a lot to go through, and face the physical side effects each week. I was lucky. The side effects are much harsher on others. Here's a realistic break down of what happened, the good and the bad. I'll break it down into for each cycle of treatment.

Every three weeks: 
Bad: 

• too tired to cook so relied on frozen meals and food deliveries from my family and boyfriend. Even making a salad seems like too much effort. 
• losing enough hair make a decent  hair piece
• taking cold showers to reduce hair loss, only to switch to room temperature because it's too cold. Then losing more hair in the process.
• Brushing your teeth with toothpaste that doesn't seem to clean your teeth completely. But it prevents the mouth sores that come with chemo. 
• Getting diarrhea, constipation, or both, depending on how your last chemo session went. (Forgive the blunt description, please.)
• Having your nails turn gray or brown, and it won't go away until my nail fully grows it out.
• No longer being able to use regular nail polish because it has formaldehyde
• Using special sunscreen and soaps / shampoo that is paraben free--and expensive

Good: 

• Not having to shave your legs, etc., shape eyebrows for a weeks at a time.
• Vaginal dryness--it sucks. Thank goodness there are good lubes out there. (sorry for being graphic)
• No birth control. so no glove no love (sorry for being graphic, again)
• Making my boyfriend lift heavy objects and vacuuming so I avoid getting lymphoma (click link for explanation) so I have no feeling and limited use of my arm. That means no blood work, heavy lifting, and careful use of my arm where I had lymph nodes removed for the rest of my life. Plus, tingling in my fingers, arm occasionally.

Week 1 after chemo: 
Bad: 

• Bruising in place where IV was inserted.
• No vomiting but occasional nausea.
• Using heating pads every moment I could to ease constant back pain. I laid on my back the entire three to four days after treatment. A few times I went to  work right afterwards, so I popped Advil like crazy to reduce the pain. 
• Metallic taste in mouth.  And nothing gets rid of it. Everything tasted strange afterwards. 
• Hot flashes through out the night.  I can't get a decent night sleep.
• Too tired to do exercise. My knees hurt too. 
• Chemo brain kicks in. Effects worsen with less sleep,and as the weeks go on. 

Good: 

• No need to shave, wax, or tweeze hair in unwanted places. SUCH a fabulous break.
• No period. What a great break. 

Week 2 after chemo: 
Bad:

• Still have metallic taste. 
• Still aches in lower back, knees, 
• Hot flashes continue. 
• Exhausted at the end of each day of work. 
• A little more energy to go on walks. No high impact exercising. 
• Chemo brain continues.
• Avoid sick people this week in particular because I'm more susceptible to getting sick after getting the white blood cell stimulant shot. This was hard to do when everyone came to work sick and it was the start of flu season.

Good: I remain hairless in hidden places and lack of my monthly visitor continues. 


Week 3 after chemo:

• Intermittent stabbing pain in my breast that makes my cancer breast. It's my boob's way of saying: "Chemo me baby."
• Chemo brain progressively gets worse. I mix up words in sentences, have trouble concentrating and can't remember adjectives or verbs to use in basic conversations.

The hardest thing: 

I can endure all of this. What I could not deal with was losing more and more hair. I lost my eyelashes on my lower eye lid, some hair on my arms and fingers, and thinning of my eyebrows.  That was OK. But I started to lose an increasing amount of hair after each treatment.  By the end of the 12 weeks, I shed every day, even after using the cold caps. I was told it's normal. The shedding can continue for 6 to 8 weeks. What I did not expect is that the shedding would worsen to such a degree. 

Cold caps often work for some people. If I had not used them, I would have lost all my hair two weeks into my chemo treatment. I had some hair left. I am grateful for that. I had kept up the appearance of not going through breast cancer. For some people, it means that they keep up to 80% of their hair. The shedding can continue up to 8 weeks after the last chemo treatment. 

I continue to shed, 6 weeks after chemo.  Each time I shed, a little part of me dies inside. It seems silly to be so obsessed with hair. I've had long hair since I was a little kid. It's part of my identity. 

  

I can't imagine not having it. I had to cut my hair short though so I would not go into real shock when it came out. That would have devastated me more than I can say.  This is a photo of my hair before chemo. 

This is a photo of my hair now that it is nearly 6 weeks after my last chemo.  

It feels like I have shed enough hair to make at least a toupee / hair piece. That is exaggerating, but it feels that way.  I am too embarrassed to go out in public sometimes. I cry each time I have a major shed. I've run out of ideas on how to creatively cover my hair loss. I don't wash my hair more than twice a week because each time I do so, so much hair comes out. I brush my hair once a day, as gently as I can, and still more comes out. My head is so dry that flakes just appear every where (pardon me for being graphic).  This is what I see each day in my sink, along with how much I've lost on the sides of my head. 

I'm worried that my hair "coverage" will become a comb-over at some point.  I can't bear to think of that. I'm tearing up just thinking about it right now. It's wearing me down, every day. 

Each time I shed, I cry uncontrollably. All my boyfriend can do is hold and hug me. He still sees me as beautiful. I'm so blessed to have his support. I don't know how I would get through this without him or my family and close friends. My boyfriend went shopping with me when I  broke down and bought a wig to cover things up. We had a blast figuring out if I look better as a blond or redhead. Once I wear the wig I guess it will bring me out of the breast cancer closet. I can't bring myself to wear it yet. 

Again, I am sincerely grateful for the cold caps. They got me through chemo. It just stinks that the hair loss is just one more factor in this battle. Radiation has been tough on me.  I'm getting to the end though. More to follow on about radiation.