Wednesday, November 26, 2014

Wig Shopping

Last Friday, I shaved my head.

It wasn't nearly as traumatic as I thought it would be. After my breakdowns earlier in the week, my hair continued to fall out in force, and by Friday I was so ready for it to just be gone. I kept reading all these articles on how to preserve your hair as long as possible, but honestly, the effort to not use heat, and to limit the washings, and not brushing it, wasn't going to prolong the inevitable to make it worth all the effort. So I did just the opposite. I bleached it blonde, I brushed it constantly, and by Thursday, when the 3 million out of the 5 million strands of hair (I read that was the average amount of hair on a human head) were falling out in droves, I just went for it and started pulling. Mostly because I had gelled my hair back, and hated it the whole day. So when I got home, I started brushing it out. Then I started pulling it out. And I couldn't stop.

Guys, it was so hideous that I only sent a picture to a few people. Think Gollum. Or the Grand High Witch. It cannot be posted here, or anywhere. I have threatened people with their lives if the picture were to leak.

So, by Friday, I was ready. My friend Ali came over and shaved it, and while the cool breeze on my bald head felt rather nice, I couldn't stand to look in the mirror. I avoided the mirrors for several hours. A part of me didn't want to have another breakdown, especially in front of people, and a part of me just wasn't ready. Ali said that I had a nice shaped head, and both she and Matti said I was rocking it pretty well. But I waited until everyone was gone, and then took off the extensions that Ali had made for me to wear under a hat (seriously, she's the best!) and stood and looked in the mirror. Honestly, it's not that bad.

Honestly, I'm surprised at how easy it was to see my naked scalp. I guess I got it out of my system. Because the last three days, I've been totally fine. I rub my fuzzy head and showers are shorter (sort of) and it's just so low maintenance. And I still have eyelashes and eyebrows that I can play up and still look feminine and pretty, and kind of badass. I sort of like it.

But I like my wig more. Except when it gets itchy, which it does, by the end of the day.

Wig shopping was an adventure. The list we were going off of came in the official Cancer Binder, and it was terribly out of date and not very helpful. There were addresses that were wrong, and while some of the shops were wig shops, others were hair restoration places that required appointments. We went into one such place, and the snooty office manager, Marcus, was absolutely unhelpful. We finally had success at Jean Paree. I tried on a few wigs, and I the one I picked was the one that made me feel the most normal after a month of worrying about my hair, and cutting it short, and then having it fall out, I found a wig that felt like the hair that I had been wearing for the past two years--if just a little blonder--and naturally, it was the most expensive. So I knew it was meant to be.


The FTC stood by and looked like two proud gay moms. Kati was snapping pictures and both were extremely supportive.

I know I say this all the time, but I really do no know how I would be surviving all of this without my incredible friends and family.

Since getting the wig, I have worn it every day. And I like it. Except when it itches. The weather is cooler, so I haven't been too hot, which is good. And I can wear the wig while my hair is still trying to grow out. I feel like this was a really good solution for me.

Now all I have to fear is the loss of my brows and lashes. Ugh.

Monday, November 17, 2014

Chemo: Week #2 -- Thoughts on Hope and Hair

Today marks two weeks from my chemo treatment, and starts the countdown for the next one. I was feeling really, really great this past week--I wasn't sick, I wasn't more tired than usual, I didn't have any weird "chemo brain" incidents--everything was going really well until I got up and took a shower yesterday.

I lost a gob of hair in the shower. I'm used to having my fingers filled with hair when I wash it, but that was when I had long, flowy locks and plenty of hair to spare. Now, I've been reminded that my days are numbered. Every strand is a painful reality check of what is to come. I am not ready. I wasn't prepared. They told me that the hair loss started at the second treatment, and I still have a week left! I needed that full week. Needed it.

I had a small breakdown in the shower. I'm having a small breakdown now.

I took a picture of the hair that I lost in just my comb yesterday.


The problem, of course, is more than just losing your hair. Sure, you lose your hair and you're bald, and you're reassured that the hair will grow back. Losing my hair, while traumatic, is not the worst part of the process (I don't think...). I think growing it back, and the many awkward phases you have to go through before you have a normal amount of hair back on your head is going to be much worse.

Another blow to my psyche? The fact that I turn 29 next week on top of it all. Everything that I've looked at, every blog that I've read, every photo I have seen shows a full 13-18 months of regrowth before you have a normal head of hair. By my calculations, that puts me well past my 30th birthday before I can even fathom feeling normal again.

This slays me.

The idea of even going on a date with someone at this point fills me with anxiety because I don't trust myself not to tell said dude that, "Oh, by the way, I'll likely be bald in a week," or to play the cancer card. I have every intention of going on a dating hiatus during this whole process because well, to be honest, my already limited amount of date requests are going to decrease when I'm walking around looking like a cancer patient.

These are the hard realities of life. And of the dating world.

I had a the sharp realization that there is absolutely and definitely no chance--zero, zilch, nada--that I will be married before the time I'm 30. Which in the grand scheme of things, is probably just fine. But in my mind, frankly, it's utterly catastrophic. I mean, to be honest, lowering my chances from maybe 5% to 0% isn't that big of a difference. The 5% being if I were in full health and had my coveted mermaid hair, I might meet someone and fall and love and commit to said person and determine to marry. But there was still a chance. There was still hope.

President Uchtdorf said, "Hope has the power to fill our lives with happiness. Its absence--when this desire of our heart is delayed--can make "the heart sick". And that's sort of where I'm at. I'm feeling heartsick. 

I'm looking at the calendar and realizing that I have months of crap, months of recovery, and months of feeling like garbage ahead of me. And my normal, optimistic self is cowering in a corner and not doing much to help me forge ahead--except reminding me, that at least, I feel fine for the moment. At least I am not sick. 


I read others' blogs, and have oftentimes read someone saying that losing their hair was a hard, but overall do-able thing, because it was a result of a drug that saved their life. I, on the other hand, am beginning to wonder if going through all of this is even worth it. Perhaps I should take my chances, and transfer my hopes of not losing my hair and my own romantic journey to hoping that there are no cancer cells in my body and that the tumor won't come back.

Tuesday, November 11, 2014

Chemo: Week #1

I have approximately 18 weeks of chemo to go through, and I've just managed to make it through my first week so now I'm down to 17.

Seventeen weeks doesn't seem like a long time in the grand scheme of things. But then, throughout the 17 weeks, I will celebrate a Thanksgiving, a birthday, Christmas, the New Year. There's a lot that will happen at work. And at church. My reign as president of my institute class will end. (Let's be honest, I'm not doing much with that anyway.)

Seventeen weeks isn't that long of a time, and yet, there is a lot that will happen in the meantime. Things that I'm still living in denial about. Like losing my hair. I keep reminding myself that it is going to happen. I cut off all of my hair in order to "better prepare myself". And yet, there's still a part of me that is hoping that it isn't going to happen. Why? Why am I hoping for the impossible? For the miracle?

I guess I sort of can't help it.

Since last Monday, when I cut off all my hair, I have hated looking in the mirror. I'm sorry. I know that the cut is cute. And I really love the blonde (the pink has already faded and I haven't put more in yet), but I hate it. I hate that I had to do it. I hate what it represents. And I don't feel pretty. I kept my hair short for years, but the last two years, I have really come to love my longer tresses. Now they're gone.

I spent the first few days looking through Instagram for the hashtag #chemohair, and other such things, only to discover that it's going to take eighteen weeks just to have a small covering of hair on my head again.

I felt really good after my treatment and most the day on Tuesday until about 3:00 p.m., when WHAM! my coworker found me crying in my cubicle because I felt so sick. It's not awkward at all to have tears running down your cheeks trying to talk about the design of a brochure. At all. Poor Travis. . .

Wednesday, I stayed home from work because I felt too sick to move, and mostly just slept. However, I discovered that one of the reasons I felt so sick was because I did not have the Dex (one of my anti-nausea pills) in my system like it was meant to! As soon as I started taking my Dex, I felt a lot better. I also have Zofran and Compazine in my arsenal of anti-nausea pills, but they come with their own side effects and so, while I tried to maintain a schedule of taking them for a few days, I found that luckily, I haven't needed them all that often.

Once I got through Wednesday--with the help of my grandma and my dear friend, Marco--I felt well enough to be back at work and went Thursday. Friday I spent the day in the hospital getting my iron infusion with Bethie by my side. It was a long day, made longer by the fact that I was confined to the darn floor once again.

Friday I had a little bout of "chemo brain", where I went upstairs for something and Matti found me sleeping on the couch a little dazed and confused. Of course, that could just be that I'm a total wonk and have less to do with the drugs. Hard to say.

I spent the weekend in the San Francisco Bay area with the FTC, and it was a wonderful trip all things considered. There were a few times where I felt a little sick, or a little tired--or a lot tired--but luckily I went with accommodating friends who were willing to point out when I looked exhausted and never pushed me to do anything. I didn't have to take my pills but a few times. I didn't have to wear my mask (I have an impeccable immune system, and I worry as the treatments continue how that is going to go...). There was one night where I felt absolutely wretched, but that was more to do with the side effects of the pills than the actual chemo, coupled with being too hot, and maybe just a little dehydrated.  Overall, it was just a really great trip with two really great friends and very little to do with the cancer.

Today, I'm back to work and feeling nothing but the sweet exhaustion of having gone to bed too late the night before. I'm ready to finish this week and get through week two, so we can get on to week three and so forth. My next chemo treatment is scheduled for the 24th of November, following the surgical placement of a port, which I decided to go ahead and get in an effort to preserve my veins and my sanity in the coming months.

Monday, November 03, 2014

Chemo #1

Today was my first day of chemotherapy.

I was really worried that I was going to be nervous--too nervous to get a good night's sleep or function--and was pleasantly surprised that I slept fine (going to bed at 2:00 a.m. will aid in that) and woke up feeling the same calm and detachment that I've felt throughout this continued ordeal. For the record, there's only place that the calm comes from and that is from Heavenly Father. I would be a wreck otherwise, and somehow, I have felt nothing but fine this whole time. I mean, there are moments, don't get me wrong, but a part of me feels like this is all part of a bigger purpose or is not without meaning, and I'll survive. And I don't just mean that I'll live. Dying of Stage 1C/II Granulosa cell carcinoma was never going to be my cards. But I'll survive the treatments, the nausea, the going bald. I'll survive as I have to regrow my hair (oh, my friends, I have great plans for this...) and the other physical changes. I will survive the fatigue. And that knowledge does not come from my optimistic attitude. It comes from my faith and my knowledge that I know who provides peace and comfort, my Father in Heaven.

It was a long day, but not nearly as bad as I imagined. Meghan picked me up from home and drove me to Huntsman, where they checked me in, we ran and got breakfast in the cafeteria, and then we came down and started the preliminary infusions. I tried to get the port in my right hand, but I guess my right arm is pretty worthless when it comes to veins. It made it difficult each time I went to the bathroom. Imagine trying to do something with your least dominant hand that you have been doing for some 27 years with your dominant hand. It's not easy. The prelim stuffs include anti-nausea and Benadryl to help control some of the side effects.

They did the Taxol first. This is the three hour infusion and the drug that makes you the most nauseous and the one that makes you lose your hair. Within seconds of it hitting my blood stream, I looked at Meghan and said, "What were the symptoms that I was supposed to report?" She asked me how I was feeling and I sat up and said, "Sick." I couldn't believe how fast it hit me. The nausea was first, but almost as immediate a vice had taken to my chest and I couldn't breathe and my shoulders and face felt as though someone were spraying me with a blow torch. Meghan said that my face turned bright red. The weird thing was, I wasn't really worried until I looked at Meghan's face, and she looked worried. She ran and got the doctors, and really, it had been thirty seconds since the onset, that they took the Taxol off, gave me more Benadryl, and started the whole process over on a lower dosage.

We were able to bump the dosage up once, but never to full strength because I was hovering on feeling sickish for a while. It added several hours to the whole day.

I got up and walked around a bit, but they had me trapped in the infusion room. So I couldn't go far. All I wanted was to be able to walk in a loop, but I was told not to leave the tiled area. Mostly I just sat and talked to Meghan.

Kati brought lunch for us, and the spicy Thai was just what I needed to curb the nausea that was lurking nearby. I really felt pretty great after that, and would have liked to visit the library or go outside. Anything to get out of that room.

We met a guy named Dove (pronounced like the verb, not the noun) who had gone through eight surgeries, and THOUSANDS of hours of chemo. He was the cancer celebrity of the unit, and told us some of the crazy stories that he had a hand in. Things like Chemo Cupid, and hiring a male stripper for one of the patient's birthdays. He was a ray of sunshine, and given his prognosis--terminal--it was a really good reality check. I am blessed, and really don't have much to complain about.

Everyone was really nice. Other patients were giving me encouragement and all of them said that after their first treatment, it wasn't so bad. And I have to say, that I really do feel very good. Not at all like my body has been pumped full of poisons that are killing my cells.

When I left the hospital after eight hours of infusions, I got a call from the doctor saying that I am anemic and I need an iron supplement infusion. That's another four hour treatment to take place sometime this week or next.

I also had a hair appointment last night. I have been reading different blogs and boards, and everyone says that it is recommended that you cut your hair. That way, it's easier to make it look puffier and healthier by giving it more volume as it starts to thin; and, it tends to be less traumatic when you finally lose your hair. So I did it. I chopped it all off, as short as I could go without shaving my neck. And I put pink in it. It's fun and sassy. And I'm devastated that I was so close to my "mermaid hair" goal (I wanted my hair long enough that it would cover my boobs) and had to cut it off. I may never get to that point. Everything I look at shows a full eighteen months of regrowth before you have a decent bob--a bob! That means my 30th birthday. . .oh gosh. Let's not think about it. My stylist did have me save my pony tail so that I could maybe use it later as extensions. That might help. I guess we'll cross that bridge when we get there. Just like everything else.

This is going to have to be a day at a time things. I feel fine now, but I have no idea what is in store for me in the next few days as the drugs continue to course through my body. I am to start taking more anti-nausea pills tomorrow, and that's suggesting that tomorrow may be rougher than today. Again, I just have to wait and see.

So one treatment of the six is done and done. It's probably too much to ask that they all go so smoothly.

Friday, October 31, 2014

Dear Prudie--How do I begin?

Hi. It's me. This time I'm not being hacked.

Have any of you read the "Dear Prudie" columns? Or any advice columns? I wrote to one once, and never saw an answer to my question, so I feel like it would be a waste of time to do it again. If I did send in a question, it would read something like this:

Dear [Insert Advice Guru Here],

The past week has been an overwhelming roller coaster of emotions. I have cried nearly everyday, sometimes out of fear and anxiety, but mostly, because I'm overwhelmed with gratitude and have a heart that is full to bursting as friends, family, strangers, and others have rallied around me in a time of need.

Not with just kind words, notes and messages, and prayers--though, there have certainly been those--but with people who understand me and understand my need to be able to find the humor in this situation and find a way to laugh about the things that really suck. Monday was quite possibly the lowest day of my life, and if not my life, it was certainly the lowest I have felt since I discovered pesky Abner, the tumor, in June. I could not find a single thing to laugh about, and yet, a phone call to my mom (and a cry fest in my car) followed by dinner at Meghan's where she and Jared were able to talk me through some things, find something to laugh about, and turned my mind away from it all had me feeling a little more stabilized.

Tuesday was completely different. A particular coworker changed my mood entirely in what, I think, others might have found to be insensitive or inappropriate, and yet, it was the exact thing I needed to feel better about the coming weeks. I also received a most beautiful bouquet of flowers (seriously, stunning).

And then there was the fundraiser.

I saw a few comments on Facebook where people were wondering if I had any idea of what was going on, if I knew about the fundraiser.

The thing is, I did. But I couldn't quite formulate a message to put out there. It would be foolish for me to demand it be shut down simply out of pride; and it would feel too avaricious for me to encourage it or advertise it on my own in any way. But I've been watching as people contributed to the fund, shared the link to their friends (often accompanied with really sweet messages that also made me cry). Seriously, overwhelming is a gross understatement. 

There have been contributions from my family--biological and otherwise; from high school classmates that I haven't spoken to since we graduated; from friends, but also from their family members; and coworkers both past and present; and total strangers; and a myriad of anonymous donors.

My question is this: How do I begin to express my gratitude? 

I guess I start with this post. Thank you. A million times. If you sent me a card, wrote me a message, or said a prayer, thank you. And if you did donate to the fund, please know, that you are the answer to not only my prayers, but to those being offered in my behalf. Out of all the things (aside from the chemo, which has recently taken the #1 spot), how to finance this has been my number one anxiety. The fundraiser will help ease that burden. Things will always be tight, but the bills will not devastate me as they would have done.

I love you all. I love your willingness to help and to see me through this. And I love your willingness to laugh with me.

I hope you all will still love me when I don't have hair...or eyebrows.

XOXOXOXOXOXOXOX

-S-


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