I woke up distracted and nervous–what does one wear to chemotherapy? I’m sure most people would say something like “loose, comfortable clothing”. I have that stuff, but I needed COURAGEOUS, yet loose, comfortable clothing. I got into my closet and got to work. Soon, I came up with the perfect outfit:
1. Black Nike boot cut workout pants, because who doesn’t look good in a boot cut?
2. Red lacy Victoria’s Secret undies, because I’m not letting any more femininity escape.
3. Warrior Dash t-shirt, because I finished this race one second over my goal time, because I beat my husband that day, and because I jumped over fire at the finish line.
4. Muddy Buddy sweatshirt, because in this was the first adventure race we ever tried and because we killed our old times in May 2011.
5. Nike empowerment bracelets: Strength, Guts, Commitment, Respect, Victory.
6. My “diamond” heart shaped studs–they kind of went with the undies.
7. Also important, but not specifically attire: my newly made sock monkey blanket and my iPad.
With all of this ready, we sent off the kids to stay with dear friends (Elm Creek peeps steppin’ up!) and headed into Austin. First stop, Starbucks, for coffee, breakfast sammiches, and tea. Then to a different wig place that has a good coupon–I may not need a free wig! Then a stop at a toy store, because I like toy stores. Then to this little bakery/cafe where I had the best clam chowder in a sourdough bowl. Then…it…was..time…to…go..to the chemo appointment.
My appointment time? 12:45. The time they called me in? 2:00. Actually infusion start time? 3:00. The time I finally got to leave? 6:15. The good news is that the whole experience did not suck as much as I thought it would. They had to stick me with an IV needle four different times before finding a good vein. That part hurt. Then they started hanging bag after bag of IV fluids: saline, nausea meds, more steroid, then the two chemo drugs. At some point, I also took a Benadryl and some Tylenol. I only had a few reactions–some muscle/joint pain, fatigue, sinus pressure, and the bruising where they tried the IV needle so many times.
The thing that struck me the most about this place was the ages of the people around me. The ladies were all grandmas with grandma-type friends sitting beside them. They were all either bald, wearing hair loss caps, or wearing wigs. I did not fit in with them. I locked eyes with every lady and I felt their pity, as I’m sure they felt mine. I still have my bouncy hair and they have sad, cold little heads. I know I will join this hair club too, but I still felt guilty about the fact that I still have my crown. Some of the ladies were resting, some were reading, and one lady (who was 4’6 and about 89 years old) was talking quite loudly on a cell phone. Apparently her friend Millicent has the same hacking cough, and it’s very hard to shake. As the day wore on, they all left until I was the only person left in the room. Once my last bag of meds was depleted, I was able to leave.
One of the side effects from the steroid is increased appetite, so we stopped at a thai noodle place and I devoured some egg rolls, BBQ pork, and lots of noodles. Jeremy described my eating as “really going for it”.
The best part of today was the fact that my husband never left my side. He kept feeding me and he even helped with my shoes. He’s a keeper. The second good thing was all of the prayers, thoughts, and vibes that came to me via text, email, this blog, and Facebook. Thanks. The third good thing was the prayer shawl that was on my doorstep when I got home. Lovingly crafted and filled with hope, it will definitely serve to keep this kid warm and toasty.
The moral of this story is it is always important to dress for success. You should take care of yourself and try to feel confident in your appearance. For me, today’s hodgepodge outfit was a necessity. I found courage in my past accomplishments, and underneath it all, I had good underwear.
Edit: I originally penned this post at 8:00ish, but by 11:00ish, nausea, muscle/joint pain, and a general feeling of ickiness hit me like a ton of bricks. Side effects are no bueno.
Oh my–Dr. D prescribed steroids (dexamethasone) to take for the next five days. I took the dose this morning and the jitters started an hour later. Probably shouldn’t have had coffee too. Also, I wonder if something that has the word METH right in the middle should worry me. Pretty sure I’m about to jump out of my own skin.
I really hope this disease is less deadly, possibly even cured when she grows up…Goodness Grace should not have to face cancer.
(who put this soapbox here? Well, might as well stand on it)
We need to put our time and energy into research and assistance for people that don’t have access or insurance or support. Think–less pink Tic Tacs and more clinical trials and more lower cost screenings. Less eggs stamped with pink ribbons and more rides to treatment and help with bills.
(quietly stepping down from soapbox)
I went to Texas Oncology for my “chemotherapy education” appointment. A very nice and honest nurse sat Jeremy and I down and told us everything we ever wanted to know about upcoming Chemo Fun Time. She was required to give me all sorts of information about what the actual day of infusion would entail. Basically I get to sit in a comfy chair while having
dangerous chemicals, I mean healing infusions, delivered to my body intravenously. Right now, I am scheduled to have an IV, but if my veins don’t cooperate, I’ll get to have a minor surgery where they insert some kind of port right into my chest. I’ve heard tales of cancer survivors flashing their port scars at each other as a symbol of solidarity, but I’m not much of a flasher with any part of my body (just ask my husband), so I doubt I would ever be a scar flasher either.
She handed us a nifty booklet courtesy of the National Cancer Institute. It is presented in mellow shades of green, with a photo of a very relaxing mountain view. When I saw the picture, I immediately thought, “I wish I was there, staring off into the distance, rather than sitting here learning about gross side effects.”
Oh the side effects. I am not guaranteed all of these, and I may not have any of them. But since I seems to suffer every medicinal side effect except death, I’m a little worried. Possible side effects include:
Fatigue (I don’t know how I could me tired than I am now)
Hair loss (thinking of temporary tattoos to put on my head)
Infertility (not a problem. We don’t even have the right parts for that anymore)
Mouth and throat sores
Nausea and vomiting
Skin and nail changes
Urinary, kidney, and bladder changes
Other (this is terrifying. Other? WTH else could there be)
The guide also includes a list of possible foods to help ease the patient with nausea, mouth sores, and other side effects. These include clear broth, baby food, puréed cooked foods, cream of rice, and saltines. No wonder cancer people lose weight. It’s not the nausea, it’s the inability to eat cheeseburgers and other life-sustaining meals.
What is important here is to hold onto the fact that this is just a moment in time. The treatments that they are offering will spread through my body and attack any microscopic cancer cells that broke free from my original tumors. If there are any of these cells left, I imagine them hiding behind organs and bones, waiting for the right time to attach themselves. But it’s okay if they are lurking, because the medicines (chemicals) will destroy them. I will have 12 weeks of therapy, with 4 infusions of Taxotere/Cytoxan. These 12 weeks are short compared to never having to go through this ridiculousness again.
The Chemo Room:
Note: file this one under “Rants”
I. Cannot. Believe. This.
My insurance does not cover cranial prosthesis. The bastards over at Blue Cross Blue Shield will not chip in for a wig. The plan is made possible through my association with TRS–the TEACHER Retirement System of Texas. Did you catch that? TEACHER. As in over 70% of teachers in America are women. Women! As in BREAST cancer! Heck, any cancer–chemotherapy–Hair loss!
What IS covered is mastectomy bras and breast prosthetics. They will pay for fake breasts but not fake hair. This seems so unjust to me. When all of the bills come in for just the mastectomy surgery, they will have paid out about $50,000. That amount doesn’t cover the eventual reconstruction surgery. I am going to have chemotherapy AND radiation–probably $20,000 for each therapy. I see that I am very lucky to have insurance that will cover this, but wouldn’t kill Blue Cross and TRS to pony up and extra $250? How about $125? This really makes me all riled up. My doctors aren’t exactly in my neighborhood, causing 60+ mile round trips several days per week…the gas money alone is killing the old bank account. It’s not like I have extra cash lying around for stupid cranial prosthetics. I just wanted to soften the blow of living with bald, and I found a good place that will measure my head. And I found my exact color. And the wig stylist guy was so much fun. 😦
I contacted the American Cancer Society and they provide free wigs. I imagine that these are leftovers from Cher’s closet or factory seconds. Not quite brown, but not really orange either–and probably smelling faintly of squirrels or feet. They probably have classic older lady helmet styles or Tina Turner spiky hairdos. The lady said that Pantene donates wigs to them every year, so maybe the hair will at least be shiny. I’m sure I will end up with something appropriate, it’s just that this seems so unfair. I plan on writing letters to BCBS and TRS letting them know how I feel. I won’t be able to do anything for myself, but maybe someone important will read my words and realize that women (and men too I guess) need this little bit of dignity called hair. After surgery, recovery, horrible side effects, chemicals to make me better while making me sick, facing my own mortality, scaring my children for life…is a little help with a wig too much to ask?
What I imagine:
What I’ll probably get:
This is just funny:
I had been putting off getting my hair cut. I knew that the best choice would be to go from long to short to none, rather than from long to none, but it was still a hard appointment to make. The thought of cutting off so much hair seemed unfair and wrong. I enlisted the help of several dear friends who searched the Internet for short hairstyles. One friend even cut out pictures from magazines! The day after Dr. D gave me a hard date to start chemo, I went in to the salon.
The girl who cuts my hair, Erica, is a true artist. She’s funny and smart and always has super trendy hair and make-up. I knew I could trust her to help me feel good about this.
I sat in the chair and took out the scrunchie that was hiding my day old curls. My long hair tumbled down and enveloped my shoulders just so. I don’t know how it happened, but right before I was about to complete this drastic change, I had an excellent, no, near perfect hair moment. I would not have been surprised if romantic music started playing and everything started moving in slow motion. We were discussing how to complete The Cut when a woman walked by.
“You’re going to cut it off?” she said, clearly incredulous. I had no answer, and I could tell that Erica was trying to get this person away before I changed my mind and ran away. Remember how I said I could trust her with my hair? This little moment showed me that I could trust her with my feelings too.
We began to get up to head to the hair-washing station, but she sat me back down and said that we should cut a little off first to relieve some of the weight. So she did. She did it fast and then it was wash time. And then it was real Cut time. She worked quickly, giving me great advice on how to style this short cut, how to buy wigs, and what to do to make my hair grow back faster after chemo. She told me not to mourn my old hair but to embrace whatever style was on my head at the time. She said that I should not be jealous or covet other hairstyles, but that I should feel confident in what I had. She also said that now was time for bravery–I would be more exposed than ever, I no longer had a mane to hide behind.
When the cut was complete, I stood up and looked at the floor, expecting to cry due to seeing all that was scissored away. I mentioned that there was less than I expected, and Erica said that yes, it wasn’t that much at all.. And then I realized that she was even smarter than I realized. She cut off some, swept it away, and then cut some more. She tricked me! Seriously, this girl is a hair artist AND a psychologist. Well-played.
And so begins my journey to less and less hair. The chemotherapy starts on December 27. Most people lose their hair 10-14 days after the first treatment.
The new hair:
Wait–You Can Get a Prescription For a Wig?
So today I met with Dr. D to get some more details about the upcoming chemotherapy stuff. I am on the schedule to begin my first treatment on December 27. My course is called TC, and I will have 4 treatments, 3 weeks apart. Somewhere within days 10-16 after the first treatment, I will lose my hair. Thus, Dr. D handed me a prescription paper that listed my needs as “1 or 2 Cranial Prostheses”. Insurance companies pay for wigs? Wow!
If you know me at all, you will realize that this is devastating news. Seriously, I am really concerned that I may have an oddly shaped head. What if there are weird moles or a crooked indentation? Way back in October, about a week into my diagnosis, I laid in bed one night sobbing over my hair. I needed a trim and I needed to touch up my roots. And I needed to get it done FAST. I think the reason I was so adamant about getting my hair done was that it gave me some control over something in my life. I could say when the appointment would happen, I could determine the right color, I could get a late 80s perm if I wanted to. I was in charge of my hair destiny (at least for a little while longer).
So today, after making the appointment and seeing the lounge chair area where they fill you with chemicals, I left Texas Oncology and headed over to Top This, (http://www.topthisaustin.com/) a salon in Austin that is owned and operated by cancer survivors and caregivers.Previously, I had decided that wigs were dumb and that I would only wear cleverly tied scarves. But something inside me said that I should at least check out the wig place.
I walked in the door and felt a sudden feeling of extreme nausea and mysterious fortitude. The people in the shop greeted me and I loudly announced: “I am losing my hair in January, so I’m here to see what you have for me.” I was immediately engaged by some very nice, knowledgable, and entertaining people. A man named Ron came over and immediately looked at my long hair and started making suggestions. He found my color, he found my style, and explained how I needed to contact the insurance company to get approval for my prescription. This man was so wonderful–he made the trip to a store I never wanted to enter feel okay. He went on to explain that they would teach me everything about hair loss and wig care. He even suggested coming in for a shave party, which is where the cancer sufferer is at the point where he or she just can’t take it anymore and needs the rest of the clumps of hair shaved off. Apparently you can make the moment fun and exciting by inviting friends and toasting with champagne. I don’t think my brain or heart will let me celebrate going bald, but I am interested in the champagne.