"But how do you still have your hair???"
Oh look, I’m back. Hi :)
I apologize for not doing more blog updates, especially for those of you that I’m not in frequent contact with. I do enjoy writing, it just takes a lot out of me. It’s emotional and makes me spend a lot of time dwelling on things that weren’t pleasant for me. It’s like working out. I know it’ll be tough and I kinda dread it, but I always feel great afterwards and I know it’s good for me. So I encourage you to keep on asking me when I’ll post again because it encourages me to push through it and get it all out there! Thanks for being my de facto therapists.
It’s been a really great few months, and admittedly, it was nice to kind of distance myself from being identified as a cancer patient. I was determined to get back to some semblance of "normal" whatever that means.
One of the big reasons why I feel “normal” again is because of my hair.
I know I've brought this up in a previous blog post, but I'll say it again: COLD CAPS are amazing!!
At my last hair update, I was still in treatment and we weren’t sure what I would look like when we were all done. For months, I continued to shed like a Husky in the Sahara Desert, and I got a few bald patches where the cap didn’t quite cover, like around my ears and at the nape of my neck.
Once treatment finished and we had a few months off chemo, we could really assess the results. Overall, based on ponytail thickness measurements (lol, that was the best method I came up with) I retained about 55% of my hair. But you would NEVER know based on looks alone! Luckily I had a super thick head of hair to begin with, so losing half of it has not been detrimental.
THE RESULTS:
This was taken September 2018, less than a year after finishing chemo.
I have a tendency to downplay the severity of what I went through. In this case, it's important to mention that the chemotherapy I was on was horrendous and known for causing full hair loss. Not all chemo results in full or partial hair loss. But my cocktail of Bleomyacin, Etoposide and Cisplatin (Platinum) is a total hair executioner. I lost ALLL other hair on my body (it was honestly really nice not shaving for months at a time haaaahahahaha no shame in my smooth body game), except for a few rogue eyebrow hairs and some scraggly lashes. Pretty sure I counted 7 remaining eyelashes at my worst haha.
So these caps really did work for me. You can also tell because I had very prominent bald spots on those areas I mentioned that the cap didn't cover. I wore my hair down a lot because I was self conscious, but here's a few pics I found where you can see evidence of my little bald patches. I didn't get any pics when it was completely bald but you can see where the regrowth started.
Now, a year after starting chemotherapy, I’ve got some cute regrowth starting to fill back in. The patches behind my ear that were completely bald are now about 5” long and curly, like little Shirley Temple tributes. When my hair is down, you can't even tell that it's only half of my usual volume. When it's up, the regrowth just looks like standard flyaways and can be secured with bobby pins and a little hairspray. I can't wait for it to reach full length and thickness again!... that's what she said
THE PROCESS:
The Cold Capping process was no joke, though. It was a painful, intense, expensive process that was markedly more unpleasant when accompanied by chemotherapy and all its side effects.
The Cold Cap saga started a few weeks before starting chemotherapy. I had stalked a young breast cancer survivor from Pennsylvania who mentioned that Cold Caps might be an option for some people, but she wasn't able to use them. I immediately started researching to see if I was a candidate. After getting the go-ahead from my Oncologist, I reached out to Penguin Cold Caps, placed my deposit and sent them all the info on which drugs they'd be infusing me with so they could come up with a protocol for me.
They shipped me an ice chest cooler on wheels filled with 4 flexible gel-filled caps, gloves for handling the dry ice, and an infrared thermometer to check the temperature of the caps. We would be responsible for picking up about 50lbs of dry ice every morning, to be packed in with the caps to keep them cold. We would have to switch caps every 25 minutes, so we got a little notebook to log times and keep track of when to switch again.
I was instructed to wear the caps for 50 minutes prior to infusion starting, all throughout infusion, and 4-5 hours after infusion was complete. The chemo infusions themselves could take as long as 6 hours, so that meant I had this Helmet of Doom on my head for up to 12 hours at a time.
On Day One of Camp Chemo (AKA Kaiser in Irvine), we were assured that we'd have plenty of time to put the caps on before the infusions started. I had to get my PICC line placed, and get checked into a hospital bed before they would even hook me up to the machines. PICC line was interesting. I think that one deserves its own post, but basically, its a catheter that runs from the inside of my arm alllllll the way to my heart. Creepy. And I had to leave it in the entire time, which meant waterproof dressings for the shower. It was a whole thing. Anywayyyyyy
When we got the nod from the nurses that we were about an hour away from start time, we got to work getting the first cap positioned.
I was warned that it would experience "some discomfort" the first few minutes before my scalp went numb.
OH. MY. GAWD.
Do you remember the Ice Bucket Challenge? Or have you ever seen a football player wince as they dip into an ice bath? That's ice water, which is gonna run somewhere around like 32 degrees Farenheit (water freezes at 32 degrees so the ice is cooler, the water will be warmer). These caps are required to be 18 degrees BELOW ZERO... firmly attached to my head... for up to 12 hours. It felt like the most intense brain freeze I've ever had, on steroids, and sprinkled with crack. Ugh I feel sick just thinking about it.
After the first few minutes of Cap #1, I angrily demanded that Jeff double-check the temperature because he MUST have read it incorrectly because this was MUCH too cold. It felt like I was going to die. My head had hypothermia. My cognitive function started to slow, I couldn't think straight, couldn't answer questions, and I felt sleepy. We had also wrapped ice packs around my ankles and wrists to try and prevent chemo-induced neuropathy. I started violently shivering, so the nurses kept bringing me warm blankets.
We got into a pattern. As soon as a new cap was securely in place, I would doze off for a few minutes, or go into a frozen trance-like state where I could kind of hear what was going on around me, but was too weak to respond to any of it. Then, just as soon as I'd fall asleep, it was time to change the cap again. Jeff would sit me up, propped against pillows, remove the velcro straps and take the hefty ice cap off my head, replacing it quickly with a new one fresh out of the cooler. If it sounds dramatic, it's because it was. I hated it.
For Day 2 at Camp Chemo, we brought an electric heated blanket and decided to forego the ice packs on my hands and feet. I naturally have bad circulation, so I prayed that the chemotherapy drugs would stay away from my extremities and spare me a life of painful neuropathy. It honestly was the least of my concerns during that time, although looking back, I really should have been more careful. I am so lucky not to have that as a lingering side effect anymore. Many chemo patients suffer from it and it is debilitating.
So the electric blanket made life much better. My head was still at sub-zero temperatures and I felt physically ill, but the blanket kept my body reasonably warm and comfortable. Miley also was a big fan of the heated blanket when we were able to finally go home.
After my first week in the hospital, I was allowed to just come in for a single day treatment and go home at night. I'd continue to wear the caps into the evening, usually just sleeping on the couch when I could. Every time Jeff would wake me up, I'd ask the saaaaame pathetic question, "is this the last one??" I really did hate it and looked forward to getting the feeling back in my scalp.
The caps alone work wonders, but I had to take extra precautions with my hair as well. I bought silk pillowcases, gently french braided my hair every single night before bed, had to avoid binding my hair like in a ponytail or a tight fitting hat, and I refrained from washing it as much as possible. Truth be told, I only washed my hair I think three times during the whole treatment. I know that sounds disgusting, but honestly it was no big deal. Chemotherapy puts women in menopause, which reduces the amount of oil your skin naturally produces. My hair and scalp were dry, with no oil of their own. I wasn't exercising or sweating at all. So really, I just avoided running my hands through it or over-brushing and it stayed clean. So don't be judgey.
When I did wash it, we filled a bathtub with water and gently washed it in the tub so it was weightless on my scalp. Washing it in the shower would have resulted in the water-logged heavy strands pulling on my scalp, and probably detaching from the root. I used a super delicate shampoo and conditioner, gently massaged my scalp, and towel dried. I used dry shampoo in between washes.
This was like a whole entire production. I'm so glad I did it, because it helped tremendously with my self esteem and my willingness to even do chemotherapy. And I'm glad that I was a bit of an experimental guinea pig within the Kaiser system. Almost every single nurse and doctor that was involved in my chemotherapy visits mentioned that they had never seen one used, or at least never seen one actually work. My Oncologist's nurse asked for my permission to discuss the caps with other patients, and I gladly gave her blessing to give my info out.
I know they won't work for everyone, and it's a huge hassle, but I feel like if there is a great enough interest in them, we may be able to work towards better solutions that are more user friendly. I also wish that they were covered by insurance. Many insurance policies are required to cover certain prostheses for other cancer patients (like breast reconstruction for breast cancer patients), and I wish that this was considered a benefit as well.
So, there you have it! That's how I kept my hair (and most of my sanity) during my chemotherapy. I always say I don't have the bone structure to pull off the shaved head look so I am so grateful that this medieval torture device existed and saved my best feature.
Just because I'm sick doesn't mean I have to look like it! I'm getting through it and getting better every day, and I couldn't have done it without the tremendous outpouring of support. Thank you guys so much for giving me the strength to beat this! I hope you found this info interesting and helped give you a glimpse into what my life was like for a while. I'll be doing more soon!
I apologize for not doing more blog updates, especially for those of you that I’m not in frequent contact with. I do enjoy writing, it just takes a lot out of me. It’s emotional and makes me spend a lot of time dwelling on things that weren’t pleasant for me. It’s like working out. I know it’ll be tough and I kinda dread it, but I always feel great afterwards and I know it’s good for me. So I encourage you to keep on asking me when I’ll post again because it encourages me to push through it and get it all out there! Thanks for being my de facto therapists.
It’s been a really great few months, and admittedly, it was nice to kind of distance myself from being identified as a cancer patient. I was determined to get back to some semblance of "normal" whatever that means.
One of the big reasons why I feel “normal” again is because of my hair.
I know I've brought this up in a previous blog post, but I'll say it again: COLD CAPS are amazing!!
At my last hair update, I was still in treatment and we weren’t sure what I would look like when we were all done. For months, I continued to shed like a Husky in the Sahara Desert, and I got a few bald patches where the cap didn’t quite cover, like around my ears and at the nape of my neck.
Once treatment finished and we had a few months off chemo, we could really assess the results. Overall, based on ponytail thickness measurements (lol, that was the best method I came up with) I retained about 55% of my hair. But you would NEVER know based on looks alone! Luckily I had a super thick head of hair to begin with, so losing half of it has not been detrimental.
THE RESULTS:
 |
| Locks on lock š |
I have a tendency to downplay the severity of what I went through. In this case, it's important to mention that the chemotherapy I was on was horrendous and known for causing full hair loss. Not all chemo results in full or partial hair loss. But my cocktail of Bleomyacin, Etoposide and Cisplatin (Platinum) is a total hair executioner. I lost ALLL other hair on my body (it was honestly really nice not shaving for months at a time haaaahahahaha no shame in my smooth body game), except for a few rogue eyebrow hairs and some scraggly lashes. Pretty sure I counted 7 remaining eyelashes at my worst haha.
So these caps really did work for me. You can also tell because I had very prominent bald spots on those areas I mentioned that the cap didn't cover. I wore my hair down a lot because I was self conscious, but here's a few pics I found where you can see evidence of my little bald patches. I didn't get any pics when it was completely bald but you can see where the regrowth started.
 |
| 50's themed party at Camp Mak-A-Dream with another Ovarian Cancer Survivor |
 |
| The baldness that occurred around my ears was most prominent |
 |
| Snapchat glamor cuz we all like to feel pretty sometimes, even if we're half bald |
Now, a year after starting chemotherapy, I’ve got some cute regrowth starting to fill back in. The patches behind my ear that were completely bald are now about 5” long and curly, like little Shirley Temple tributes. When my hair is down, you can't even tell that it's only half of my usual volume. When it's up, the regrowth just looks like standard flyaways and can be secured with bobby pins and a little hairspray. I can't wait for it to reach full length and thickness again!... that's what she said
 |
| Baby curls down the back of my neck |
THE PROCESS:
The Cold Capping process was no joke, though. It was a painful, intense, expensive process that was markedly more unpleasant when accompanied by chemotherapy and all its side effects.
The Cold Cap saga started a few weeks before starting chemotherapy. I had stalked a young breast cancer survivor from Pennsylvania who mentioned that Cold Caps might be an option for some people, but she wasn't able to use them. I immediately started researching to see if I was a candidate. After getting the go-ahead from my Oncologist, I reached out to Penguin Cold Caps, placed my deposit and sent them all the info on which drugs they'd be infusing me with so they could come up with a protocol for me.
They shipped me an ice chest cooler on wheels filled with 4 flexible gel-filled caps, gloves for handling the dry ice, and an infrared thermometer to check the temperature of the caps. We would be responsible for picking up about 50lbs of dry ice every morning, to be packed in with the caps to keep them cold. We would have to switch caps every 25 minutes, so we got a little notebook to log times and keep track of when to switch again.
I was instructed to wear the caps for 50 minutes prior to infusion starting, all throughout infusion, and 4-5 hours after infusion was complete. The chemo infusions themselves could take as long as 6 hours, so that meant I had this Helmet of Doom on my head for up to 12 hours at a time.
On Day One of Camp Chemo (AKA Kaiser in Irvine), we were assured that we'd have plenty of time to put the caps on before the infusions started. I had to get my PICC line placed, and get checked into a hospital bed before they would even hook me up to the machines. PICC line was interesting. I think that one deserves its own post, but basically, its a catheter that runs from the inside of my arm alllllll the way to my heart. Creepy. And I had to leave it in the entire time, which meant waterproof dressings for the shower. It was a whole thing. Anywayyyyyy
 |
| PICC line placement |
When we got the nod from the nurses that we were about an hour away from start time, we got to work getting the first cap positioned.
I was warned that it would experience "some discomfort" the first few minutes before my scalp went numb.
OH. MY. GAWD.
Do you remember the Ice Bucket Challenge? Or have you ever seen a football player wince as they dip into an ice bath? That's ice water, which is gonna run somewhere around like 32 degrees Farenheit (water freezes at 32 degrees so the ice is cooler, the water will be warmer). These caps are required to be 18 degrees BELOW ZERO... firmly attached to my head... for up to 12 hours. It felt like the most intense brain freeze I've ever had, on steroids, and sprinkled with crack. Ugh I feel sick just thinking about it.
 |
| Are you f#@&ing kidding me right now?? š¬š£š© |
After the first few minutes of Cap #1, I angrily demanded that Jeff double-check the temperature because he MUST have read it incorrectly because this was MUCH too cold. It felt like I was going to die. My head had hypothermia. My cognitive function started to slow, I couldn't think straight, couldn't answer questions, and I felt sleepy. We had also wrapped ice packs around my ankles and wrists to try and prevent chemo-induced neuropathy. I started violently shivering, so the nurses kept bringing me warm blankets.
We got into a pattern. As soon as a new cap was securely in place, I would doze off for a few minutes, or go into a frozen trance-like state where I could kind of hear what was going on around me, but was too weak to respond to any of it. Then, just as soon as I'd fall asleep, it was time to change the cap again. Jeff would sit me up, propped against pillows, remove the velcro straps and take the hefty ice cap off my head, replacing it quickly with a new one fresh out of the cooler. If it sounds dramatic, it's because it was. I hated it.
 |
| Jeff getting a new cap from the ice chest |
For Day 2 at Camp Chemo, we brought an electric heated blanket and decided to forego the ice packs on my hands and feet. I naturally have bad circulation, so I prayed that the chemotherapy drugs would stay away from my extremities and spare me a life of painful neuropathy. It honestly was the least of my concerns during that time, although looking back, I really should have been more careful. I am so lucky not to have that as a lingering side effect anymore. Many chemo patients suffer from it and it is debilitating.
So the electric blanket made life much better. My head was still at sub-zero temperatures and I felt physically ill, but the blanket kept my body reasonably warm and comfortable. Miley also was a big fan of the heated blanket when we were able to finally go home.
 |
| Burrito puppy |
After my first week in the hospital, I was allowed to just come in for a single day treatment and go home at night. I'd continue to wear the caps into the evening, usually just sleeping on the couch when I could. Every time Jeff would wake me up, I'd ask the saaaaame pathetic question, "is this the last one??" I really did hate it and looked forward to getting the feeling back in my scalp.
The caps alone work wonders, but I had to take extra precautions with my hair as well. I bought silk pillowcases, gently french braided my hair every single night before bed, had to avoid binding my hair like in a ponytail or a tight fitting hat, and I refrained from washing it as much as possible. Truth be told, I only washed my hair I think three times during the whole treatment. I know that sounds disgusting, but honestly it was no big deal. Chemotherapy puts women in menopause, which reduces the amount of oil your skin naturally produces. My hair and scalp were dry, with no oil of their own. I wasn't exercising or sweating at all. So really, I just avoided running my hands through it or over-brushing and it stayed clean. So don't be judgey.
When I did wash it, we filled a bathtub with water and gently washed it in the tub so it was weightless on my scalp. Washing it in the shower would have resulted in the water-logged heavy strands pulling on my scalp, and probably detaching from the root. I used a super delicate shampoo and conditioner, gently massaged my scalp, and towel dried. I used dry shampoo in between washes.
This was like a whole entire production. I'm so glad I did it, because it helped tremendously with my self esteem and my willingness to even do chemotherapy. And I'm glad that I was a bit of an experimental guinea pig within the Kaiser system. Almost every single nurse and doctor that was involved in my chemotherapy visits mentioned that they had never seen one used, or at least never seen one actually work. My Oncologist's nurse asked for my permission to discuss the caps with other patients, and I gladly gave her blessing to give my info out.
I know they won't work for everyone, and it's a huge hassle, but I feel like if there is a great enough interest in them, we may be able to work towards better solutions that are more user friendly. I also wish that they were covered by insurance. Many insurance policies are required to cover certain prostheses for other cancer patients (like breast reconstruction for breast cancer patients), and I wish that this was considered a benefit as well.
So, there you have it! That's how I kept my hair (and most of my sanity) during my chemotherapy. I always say I don't have the bone structure to pull off the shaved head look so I am so grateful that this medieval torture device existed and saved my best feature.
Just because I'm sick doesn't mean I have to look like it! I'm getting through it and getting better every day, and I couldn't have done it without the tremendous outpouring of support. Thank you guys so much for giving me the strength to beat this! I hope you found this info interesting and helped give you a glimpse into what my life was like for a while. I'll be doing more soon!
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