Ok, so yesterday I posted about how hubby and I entertain each other and keep busy during my infusions. Perhaps I should explain. When I first found my cancer (yes, I knew in my heart it was cancer from day 1, before any tests were done), the one thing I struggled with the most was needing chemotherapy and losing my hair. I did not want to be a walking advertisement for this disease I am fighting. I don't want to be bald. It may be vain, but the idea of losing my hair is more traumatic for me than losing my breasts (which I will during surgery after chemo).
In one of my many forays into Google medical school, I stumbled upon people talking about Penguin Cold Caps. What are they? You can visit their web site (www.penguincoldcaps.com) and learn all about them. In short, they are gel-filled "caps" that you freeze and keep on your head during chemo. The theory is that by freezing your scalp, you keep a majority of the chemotherapy drugs from entering your hair follicles, hence your hair doesn't fall out. Now, of course it's not that easy. People who use the cold caps still lose hair - some just a little, some up to half of their hair, and some have unfortunate results and still end up needing a wig. In hopes that I will fall into one of the first two categories (because face it, I have a LOT of hair!), I talked to hubby and told him I wanted to do this. Of course, hubby being hubby, he immediately said, "Whatever you need to be more comfortable through this." Did I mention that I love him?
Anyway, there is nothing easy about the process. First of all, it's very expensive. You have to "rent" the caps from Penguin, and it's $500 a month for three months, then $100 a month after that. Also, if your facility doesn't have a biomedical freezer, you have to purchase 100 lbs of dry ice for every treatment. That gets very expensive! Second, it is a huge process. You have to wear a cap for twenty minutes, then another for twenty minutes. and then ten minutes into the third cap the nurse can start the infusion. The nurses at my facility are VERY helpful and willing to work with us, for which I'm thankful. Throughout the chemo treatment, we have to change caps every 30 minutes, which is a LOT of work for hubby. He has to keep track of the order in which we use them (we have eight caps), check the temps with an infrared thermometer, knead them (and even sit on them!) if they are too cold, and then change out the caps on my head every half hour. This continues for another four and a half hours after my chemo infusion is finished. Luckily we only live five minutes away, so we are able to change a cap then come home and finished the rest here. Third - those suckers are COLD!!!!!!!!! Think brain freeze on steroids. The caps have to be at -34 degrees Celcius when they go on my head. The first couple of minutes of the first cap or two are very, very uncomfortable. If it works, though, it will be more than worth it!
Most chemotherapy patients are completely bald by day 15-20 (after their first treatment). As you can see from the title of today's post, I am on day 17 and have not lost ANY hair. With the caps, I can only wash my hair two times a week, but I wet it in the shower every day (with cold water - brrrrr) and comb it out before letting it air dry. I think this morning there were maybe five hairs on the comb. Much less than I'd lose in the shower on a normal day. Realistically I need to be prepared for hair loss. Even with the caps, almost everyone thins out, some with up to 50-60% hair loss. However, even with this much loss, the caps "preserve" your hair follicles and your hair will most likely grow back more quickly than without the caps. Some people have even said their hair started coming back DURING chemo. With my thick curls, any really thin spots should be quite hidden. Hopefully.
Right now it is too soon to tell if they will work for me. I have a long, harsh chemo regimen in front of me. However, I have already had two treatments and no hair loss. That's enough to give me hope!