Tina!

Dear Fabulous Family & Friends,
It’s been a while. Sorry about that. I can blame part of it on spending time doing things because I actually can DO things. Not just lie in bed or walk around nauseous. But mostly it’s just because I don’t enjoy writing. Remember, I took business classes to get out of the writing classes. I didn’t have to write a term paper until college. And I bet you can guess how well that went. It didn’t.

So, I shaved my head. Yep. Wait. I’m getting ahead of myself. I haven’t written since March 19. Well, I’ve written this in my head numerous times. But then things change or I’m on one of my low points and it never gets on the page. Plus I have chemo brain. So I forget it quickly after I think it. Stupid brain.
So, let’s see if I can recap the last few months. The last I wrote I had a CT scan. It showed that the tumors in my liver were shrinking so that was good. Tried out the cannabis to see if it would help my nausea. Tried many forms. None worked. Just made me feel drugged and nauseous. Bummer. Oh well. Tried other stronger pharmaceutical nausea drugs. They did the same as the marijuana and other pharmaceuticals: Made me feel drugged and nauseous. No euphoria or stopping of nausea. So, I just went with the basic nausea meds they give with chemo. I asked if I could try no nausea drugs at all and they said no. I guess others have tried it and it’s more miserable than the nausea with the drugs. So, I agreed. I tried acupuncture. It helped a little. I still had nausea but it’s weaker. So that’s good. I’ll stick with it. However it does nothing for the “anticipatory” nausea. They call it that because they’d get punched if they said the truth: “It’s all in your head.” It’s the strangest thing. I finally get over my 10+ days of nausea and then start feeling good enough to eat, feel more normal—except for my bald head. However, the day the chemo comes, I wake up slightly nauseous. I try to think happy thoughts and try to imagine being on the beach. Helps a little. Not much. I have these slight waves of nausea through the appointment with the Oncologist but overall I’m ok. Then I enter the chemo room. Instant nausea! It’s quite ridiculous really. It’s a Pavlov’s-dog effect. And truly, “It’s all in my head.” Ruff!
I tried smelling peppermint oil at home when I wasn’t nauseous to try and give me something to think about when I’m sick. Never really seemed to work. And the other day, when I was going through a drawer I found the bottle of peppermint oil and gave it a whiff. Instant nausea! Buwahahahahaha. I don’t know why that is so funny to me, but it is. Stupid brain!

My sense of taste has diminished again. I went through the salty stage where I salted everything. A lot! Yum. Loved that stage. Then the sour stage where the only way things tasted good is if they had lemon juice or vinegar on them. Now I’m in my “chocolate” stage. I’d say “sweet” stage but it’s not really sweet stuff I like or can taste well. It’s chocolate and, you guessed it, Nutella. Yep. Back on the Nutella kick. I had some Nutella in the pantry that my daughter brought home from College. It just sat there for a long time because I had no desire for it. Then this stage hit and I ate it all in one sitting. Bad Mommy! So, I purposely don’t buy it. But I do buy chocolate. Well, really it’s chocolate chips. They’re a whole lot cheaper and you don’t have to waste time and energy removing the wrapper from the bar! So I keep Nutella out of the house. However, I broke down yesterday while at Target and bought a small jar of Nutella. Bad idea. Got home and ate half the jar in seconds. I finally pulled myself together and put it away. Then I went to wash my hands and looked in the mirror. I had it all over my face! I’m hopeless! Stupid Nutella! Another 20+ miles I have to walk now to get that off. And run a marathon!
So the eating was pretty much like this: have chemo and barely choke down water let alone food. But I make myself eat because I need the nutrients to recover for the next chemo. So for 10 or so days I force myself to drink water (helps the nausea) and eat what I can. So I lose 2-3 pounds in those 10 days. Then the nausea goes away and I eat. A lot. And gain back those 2-3 pounds. That way when they ask if my weight is stable I say yes…over a 14 day time period…quite stable. Stable enough. Now that this chemo round is over I’m going to gain so much weight!

Ok so the chemo went fine. Much less side effects than last time. In fact, I only had 4 days of nausea for most of the chemo. But then it started adding 1-2 days each additional chemo. Made it up to 12 days. The nausea is a constant that I’m learning to bear—the acupuncture helps. I’m trying to figure out how to use my anticipatory nausea to my advantage. I was thinking about bringing a jar of Nutella with me to chemo. Along with chocolate, butter, cream, cookies and wine and … never mind. Won’t do it. I know, I’ll call my hubby and kids and start nagging them and telling them to clean up their “droppings” (code for anything left in the wrong spot). That way whenever I start nagging them in the future, I’ll get instant nausea and have to stop. Hey, maybe that will work. Or I’ll just be nauseous forever.

So, anyways, I completed 8 infusions in this second round of chemo, which is typical for most people. My tumor marker numbers kind of leveled out (around 100) so it was time to quit. I get a break now until (and if—always hoping for healing) the cancer starts growing again. I know I get a month at least because that’s when I have my next CT scan. And if there’s not some huge growth, I’ll at least get another month. I got 6 months last time. Hopefully, I’ll get more this time, but one never knows. The chemo keeps it in check but cancer is intrepid and is constantly morphing into different strains. Stupid cancer!

Each day I feel a bit better. Kids are out of school. Summer is here. It’s a happy time. I try not to think too much about the cancer. It’s hard, though, because each time I look in the mirror I see my shaved head. I tried to wear a smaller type of bandana instead of the wig yesterday. Not good. It fit tight and I forgot to put on extra make up so you can see that I still have eyebrows and eyelashes, so I’m sure I looked super sick. You won’t believe how nice everyone was to me at Target. Either that or they were scared of me!

OK. Enough about the boring stuff. Let’s talk hair. You know how there’s those days when you drag yourself out of bed and your hair just looks fabulous? Me neither. Never happens. My “I woke up like this” is so not flawless. More like, “So, did your college buddies try and shave your head?” Anyway, it was about 3 inches long if I held it up on the top of my head when it finally started to come out in earnest. (It was true comb-over hair.) No longer acceptable for public consumption. So, when I was feeling particularly horrid after one chemo, I cut it. With huge sewing scissors of course. What can I say, they were handy. Yep. I chopped it to one inch all over. The whole time I thought. Hey, who gets to chop their own hair—and get to blame chemo for it looking so bad. Me. I do. So I did. My family was ecstatic. Wait, no. They were horrified. But I didn’t care. No one was going to see it anyway. So, I wore it that way (concealed by my wig for a while). But it started to look even nastier as it got thinner and thinner. So, one night I had the family shave my head to about ¼ inch. (I wasn’t ready to go bald yet.) It took forever! Don’t believe how they show it on the movies with just a few quick runs of the electric shaver and it’s all off. No way. Each of the kids and Scott got a chance at shaving my head. I kind of felt like a sheep—I even made sheep sounds. But it was good. And it was soft. Like a fuzzy baby chick.
Anyway, that went well for a while but my hair was still falling out so I decided to experiment with it and I shaved three lines on the side of my head (that was our friend Tony’s idea—friends can be dangerous!) Again, how many people get to do that?

Then after one particularly rough chemo, I was so bored and sick of being sick that I decided it was time to shave it. So I had my kids each take a turn and shave a shape out of my hair. I had a peace sign, a weird wave, and a smiley face. Again, who gets to shave shapes into someone’s hair. Not many. I’m all about giving my kids opportunities for growth. Nah. Not really. I just thought that they’d have fun.

After that fun, I just shaved it all off. Took forever. Had to have help. I have no idea how people stay bald who aren’t really bald. It’s worse than shaving your legs! So, I got to see myself bald and smooth. Ugly! Felt strange. I cried a little. But got over it fast. At least I now know that I have no birthmarks on my head. Just one tiny freckle. File that in the “who cares” file. Bald is not beautiful on me. The strange thing is the next morning I already had a 5-o’clock shadow and my head felt like it was a huge piece of sandpaper. An.noy.ing! That lasted for a couple of days. I could’ve used my head to smooth out the stray bits of wood on our deck. Crazy.
It’s finally grown back a bit and it’s soft again. So, it is growing. Not sure of the color. It’s dark in some places and “blonde” (the older woman’s word for gray) in other places. It’s not long enough to wear in public yet. Well, long enough where it looks like I did it on purpose. Guess, we’ll see what happens.

Oh, by the way, I forgot to mention my wig. It looks like Snow White’s hair. I do NOT exude Snow Whiteness, so I have to put clips in it to make it look more like me. It works and I can fake it ok. However, the first time I wore it, I tried it out in Costco. I shocked one of the workers who sees me a lot. We had a quick totally-fake pleasantry exchange. He didn’t know what to say. It’s not like, “Hey, your hair grew back in a week. Wait…” would exactly be normal. I felt bad for him.
Anyway, wore it to Costco. Felt like everyone was looking at me and my new “hair piece.” I’m sure they weren’t, but it sure felt that way. So, I made it home without losing it in the wind (We had a very windy Spring). Got home and looked in the mirror to see how I looked. Stray pieces were here and there (The hair’s not attached to my scalp so I can’t feel it when it’s askew!) And there, right next to my ears were two little horns. Yep. Well, they weren’t real horns. They were the little tabs that you use to center the wig on your head. They’re supposed to lie down flat. No one told ME that! So I just walked around Costco with my little horns sticking up. Fail!

I’ve gotten better with the wig. I still forget sometimes that I have it on and that I have to adjust it if it’s windy and put all the hairs back in place and make sure it’s not down too low so I look like I have no forehead. Or back so far that my forehead is larger than my face. But it works. My daughter named it Tina. The name stuck. I’m always scolding Tina for not staying put or giving me a headache. We film her doing Karaoke (she's not very good). I try to brush her regularly and not use her to scare other drivers by taking her off while I’m driving. She’s patient, that Tina.

Lately, though, I’ve gotten lazy. There are so many rules with wigs. You can’t cook while wearing them unless you like melted plastic sealed to your head. You have to brush them nicely and wash them when you sweat like a pig in the heat. So I basically wear no head covering while at home and bandannas when I’m out. But, it’s nice to wear the wig. It draws WAY less attention.

So here I am. On summer break. Love it! My hair is growing back slowly and I think most of my friends have seen my shaved head—well those who want to see. So it’s not such a shock anymore. Life is good. Thank you, My Dear Friends, as always, for your prayers and calls and letters and cards and emails and texts. They really help! God has been so very merciful. I really have been doing well. This chemo round was so much easier than the first one. I’ve been able to organize and purge (my house) and DO things, which really makes me happy. Like anyone, I’d love to be completely healed and done with this mess. But, sometimes, things don’t work out how we want. I trust that God knows what’s best and that helps when times get tough. Like I said, each day is a gift and I try to remember that. Though, sometimes I get really crabby and hate everything. But isn’t that real life. A journey. Well, more like a road trip. Hills and valleys. Detours and traffic. And nausea. Yucky nausea. But always in anticipation of the destination.

So go and have yourself an AMAZING summer. I am!

Plus, I have to go. Tina is whining and wants to be brushed. Stupid Tina!