God has a sense of humor

So, with my second treatment I had almost a full week’s worth of sickness. 😦 To put it simply, it really sucked and I am grateful to be on this side of it. At least until my next treatment on Wednesday :/

In the meantime, I am rocked by God’s humor. Do you want to know when the most of my hair started coming out in handfuls? You guessed it, right when I felt the most nauseous and sick. I finally reached a point where I could move a little without being absolutely miserable and Tim and I went to the haircut place. The lady there convinced me not to fully shave my head, but instead to clip it very short. I’m glad I did. But with it shorter, I realized that most of the hair that had grown in the last three weeks since I’d started chemo was gray. And when you clip your hair very short, guess what is left? Only the most recent hair growth. Yes, God has a sense of humor, for sure.

My hair is now so thin that you can see my (very untanned) scalp show through. It’s quite an ugly sight. I call it my Gollum look (Lord of the Rings anyone?), but at least mine is clipped short to my head, so not quite as creepy. But when I wear my scarf, I still have the slightest hint of hair around my ears to help me feel a little more normal. Gray or not, I’m glad it’s still there for now.

So what is it like to be a chemo patient? That first week after a treatment- it is sad, scary, sickening. I walk around knowing that the smallest things I used to do, I no longer have the strength for. And I do mean smallest- like even reaching for a kleenex…

Where I used to enjoy eating, now I do my best to choke down a few small bites without gagging because I know an empty stomach is even worse for nausea. I sit on the couch as still as I can possibly be to keep from making my head dizzier or making my eyes hurt worse, or the gagging to start again. I struggle to find the strength to pay attention to my beautiful children as they ask how I am with their worried little faces. To reassure them that I’m okay, that I just need some rest.

Now – I feel pretty good. I’m on the backside of the treatment. Life is funny again, and joyful. I’m tired, but I can eat. I feel the love and support from my family and friends and coworkers. Without all of them propping me up, I don’t know how I’d make it through. I have great sympathy for those people who are sick or sad and have no one to support them this way. Everyone should feel that someone cares, it’s what makes life bearable when you are in such bad shape. 😦

Over the past week, as I stood in the shower, gobs of hair fell out around me and clogged the drain. It was a bit horrifying. On Monday, I stood there, trembling from weakness, using a heavy duty razor to shave the friggin’  industrial strength hair off my armpits and legs so I could wear shorts to my daughter’s baseball game with at least a little bit of dignity, while the hair off my head surrounded me on the shower floor. :/ Why? Because God has a sense of humor.

Two days later, I looked at my legs and realized that my hair hadn’t grown back. Hallelujah! Two days after that, I realized it still hadn’t grown back. No more shaving! Finally, a break for me. Something good out of all the badness I’ve been dealing with so far. 🙂

Yesterday was the first day that I felt pretty decent. We went to my son’s baseball game last night, and as we sat there, I put my leg up and realized ALL the hair that hadn’t grown in 4 days, had suddenly popped out as long as if it had been growing all that time. Since my shower that morning! For crying out loud! So much for dignity. God truly has a sense of humor.

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The cure is worse than the disease?

Not really. Not in the long run obviously. Cancer is a killer. But you go from feeling just fine physically while knowing you have cancer inside of you, to feeling incredibly sick and weak from chemo while trying to kill the cancer.

Left untreated, the cancer would continue to grow and spread and eventually take over various parts of my body until I could no longer function normally, and eventually my body would shut down. I know this. And this chemo sickness is temporary. I know that this is what I have to do to treat my cancer. But man, was I sick for the last couple of days!

I am finally on the upswing from the second treatment. Still have to be careful what I eat and how much, but finally I ate last night. For both of my treatments so far, I reach a point after a couple of days of nausea where I crave one of my husband’s grilled burgers. I know when I reach that point, I am at the crest of the hill finally. I was slow eating it, but it was so good, and afterward, my stomach felt more stable. I am still weak and slow, but I’m upright. I even made my husband some day after Father’s Day coffee this morning to make up for not being able to do anything for him yesterday.

My hair is incredibly thin now. It lays flat and limp against my head. Last night Reagan gave me a back rub and while she was sitting behind me, she said, “Mom, you have some bald spots now”. I figured that was coming sooner or later.

Every morning I go out on the back deck and comb through my hair.  An alarming amount comes out each time. I am at that point where I need to shave it, but have been too sick to even care.

I told my friend that it sounds weird to use the word lucky when talking about cancer, but I do feel that way. Lucky that it is breast cancer which can be very curable, especially when you have the estrogen and progesterone receptor positive one like I do. Lucky that I can feel the cancer physically and knew already that since I started chemo, it had begun to soften and was shrinking. If I had a cancer that was in my bones or my abdomen, I would have to wait for an MRI or PET scan to see the results, but with breast cancer, I can check on it every day.

So, the good news is that at my exam last week, they officially confirmed that my cancer was definitely smaller since we started chemo. When diagnosed, it was 5.5 cm by 4.5 cm. Last week after only one chemo treatment, it was 4 cm by 3 cm. She said that was a great response for only one treatment, so I am feeling pretty lucky right now, sick or not.

I am home from work for a couple more days. I will work when I can, and rest when I can’t. I have leave time I can use if I can’t make up all my hours.  Today is starting out to be a beautiful sunny day. I am lucky.

My head is crooked

I bought some sunglasses the other day, and as I tried on several different pairs, I realized my head is crooked. I always thought it was my other pair of sunglasses. They lay slightly crooked on my face – I can see if I look downward that one side touches my cheek, but on the other side, there is a gap. I thought it was the glasses. After I got them, I kept trying to bend them a little to make them fit, and finally gave up.

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If you look close you can see the gap.

I figured a new pair of sunglasses would fit better, but now I realize, it’s my head. My head is crooked. I also have a dry spot on the top of my head towards the back. I have to admit I know it’s there because I am a worrier and tend to keep touching my dry skin (making it worse of course) when deep in thought. I do it on my face and my neck, and also that spot on my head. And I scratch at them, usually absent-mindedly, but I become aware at some point that I am doing this and make myself stop. 😦

It occurred to me that all of this will show when my hair is gone. My crooked head, the dry spot. What else? I mean, my head has been covered with varying lengths of hair my entire life since shortly after birth. What else does it hide? Ugly veins? Weird shaped bumps? :/

Reagan told me the other day that when my hair fell out, she would like it if I kept my head covered all the time, because she didn’t want to see it. A 7 year old’s view of all this, so of course it didn’t hurt my feelings. I did explain to her that I was still going to be me, I would just look differently. I also told her that I would not have my head covered all the time, and that she would just get have to get used to how I looked after a while.

It has started. The hair fall. My scalp feels tight and dry, and every time I touch my head, my hand comes away with several strands of hair. My hair is pretty thick, so it will take a while to be noticeable at this rate, although I expect after Thursday’s chemo treatment, the rate will increase rapidly.

So far, no such luck on my legs and pits. Dang it! Looking forward to not having to shave anymore, so that part can’t come soon enough.

So, if when you see me next time I’m hairless, be kind – I know my head’s crooked and I have that dry patch there. If you see any ugly veins or weird bumps, no need point them out. I don’t really want to know.

I’ll probably be wearing a head covering of some kind, but some of my bald might peek out. It’s ok. I’m still me underneath.

sunglasses

Driving into fog

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Lighthouse in fog off Mackinac Island – 2013

A couple of weeks ago, I was driving into work and it was very foggy. You know how you can only see a little bit ahead of you, and then everything else is sort of blurred out? And even the stuff close by looks slightly different. I realized that is how I kind of feel right now. I can only see so far in front of me. I’m driving into fog.

Maybe that’s good. The next treatment is coming, I’ll feel sick again. I’ll lose my hair soon. I don’t really want to think much farther than that right now. Focus on the here and now. I am having good days right now leading up to Thursday’s treatment. I want to focus on feeling good and enjoying my family and friends, and not think about how I’ll feel after Thursday.

And, like when you’re in fog, everything looks different to me now. Even the close up things. I look at my husband and although I still see my best friend for the last 22 years, I also see a worried man who is doing his best to hang on to normalcy. He’s being strong for me, but of course I know he can’t help but think of the what-ifs.

I see my kids realizing that Mom’s new normal involves lots of naps. (Of course, I consider it my “new normal for now”. I continue to push to keep active. Now that I am up to 1 mile a day of walking, I am adding a second walk on the days that I can. Yesterday I used the rowing machine for 10 minutes.) Andy told me the other day that even though I had cancer, I still made the best waffles in the world. 🙂 I don’t always tuck the three little ones into bed anymore as the stairs can be tiring some nights, so we settle for hugs before they head to their bedrooms. It’s the little things like these that are different.

I think about the things I used to take for granted every day. The little moments of closeness with my family, the little things my friends do to keep in touch with me. I appreciate it all much more than ever before. The kids were in the hot tub playing last night while I was in the kitchen and just watching and listening to them splash and giggle was so warming to my heart. My babies.

My friend Nikki texted me this morning to tell me she’ll miss me while she’s on her trip this week, and Juanita checked to see if she would see me at baseball games this week. My friend Kristina checks on me almost daily. All the people sending me messages or going out of their way to check on me. I feel full of life and love and support right now.

When I look at people around me – strangers – I see them differently. The older lady at the movie theater – her very, very short hair, and no teeth -probably someone who has recently finished chemo. She looked so happy to be at the movies, teeth or not. At one time I would have thought to myself- geez lady, put in your teeth before you leave home! But as I watched her walk slowly, and carefully, carrying her popcorn, her clothes so baggy on her thin frame, all I could do is say a prayer for her to overcome whatever made her so weak and unable to wear her dentures. I see things differently. I’m glad for that.

Mackinac Island 2013

Mackinac Island 2013

The other thing that the fog made me think of was chemo brain. It’s basically the chemo drugs, the stress, the fatigue, the worry, etc all lead to you having what the American Cancer Society calls “mental cloudiness”. You get forgetful, you have difficulty concentrating, your brain has to work hard to analyze and process things. Basically, you lose some brain function. Like driving in fog.

For most people, it’s temporary and it all comes back at some point after the treatment ends. For a very few people, they feel that they never recover. Some of it is not measurable by others and can only be sensed by the person himself, but I imagine it can be very depressing to feel that you have lost some of your abilities.

Does this worry me? Of course! I’m a worrier! My brain is my biggest asset. My job requires a high functioning intelligent being. My personal life revolves around knowledge and intelligence. I write. For those of you who don’t know- I actually wrote a book  (as of yet, unpublished). I have several more in the works. What if my brain function is diminished and I can no longer write? What if I lose my edge at work and can no longer perform at the level I need to?

So far, no sign of anything other than fatigue-induced cloudiness, similar to what happens in pregnancy. If it happens to me, I have to believe it’ll be temporary. That it will go away and I will be myself again at the end.  I can’t think otherwise, it would be too devastating.

Freeze my head?

My hair, my hair, my hair. It’s getting longer, but more lackluster. Not sure if it’s the damage from the chemo, or because it is getting heavy and faded from not cutting or coloring it for so long. Well, I’m not wasting my money or time now. I expect by the end of next week, it will begin falling out.

I’ve had it at various lengths throughout my life.

In 1992, it was probably the longest it has ever been. As you can probably tell from these pictures, I have fairly thick hair.

1992-003                                                    199210-001

Since having kids I’ve kept it at shorter length – anywhere from a shoulder length (which I look back at now and think “how unfortunate that I thought that was nice”) to this in between length  from 2 years ago to the shorter length I sport now.

2013

2013

This was my 40th birthday. My hair is short like this now.

This was my 40th birthday. My hair is short like this now.

I did some reading and found out there are people so worried about losing their hair that they freeze their heads during chemo to try to keep it from falling out. It’s fairly successful. I saw stats that something like 80% of women won’t experience as much hair loss, although many still have so much thinning that they end up wearing a wig anyway. Apparently in Europe it’s a fairly normal procedure. Some of them are not approved by the FDA here. Let me explain.

They have two different types of “cold caps” that can be used. The first type are caps that you place in dry ice and then put on about an hour before you start your chemo sessions. It has to be replaced with another every 30 minutes from then on throughout your chemo sessions and for a couple hours afterward. It takes about 14 caps per treatment. Penguin Cold Caps were the first to be used in a couple states in the U.S. and they cost $580 per month to rent, plus you have to purchase dry ice for each treatment.  You also have to have someone help you replace them, as apparently it’s not easy to get it on correctly by yourself.  As you can see by the picture below, it’s shaped to your head by a number of Velcro flaps and needs to fit properly to work. The dry ice is needed because the caps need to start at -32 degrees Celsius (-26 degrees Fahrenheit). There is a new company – Chemo Cold Caps – that is beginning some research trials in the U.S. now as well. Because these are simply a hat you wear on your head and not an actual device, the FDA has not involved itself in regulating these (yet?).

coldcapFergusonfollicles (See: http://www.coldcaptherapy.com/faq)

Another option, not available in the U.S. (the FDA is currently undergoing studies of these), is a Swedish product called DigniCaps. These devices are made of silicon and neoprene, and they have tubes that connect to a machine which pumps a cooled gel through the cap to keep your scalp cooled to around 3 degrees Celsius (about 37 degrees Fahrenheit). This means you only put the cap on once and leave it- no changing it every 30 minutes like with the cold caps.

DigniCap-cap (See: http://www.dignicap.com)

So, what does freezing your head do?

It makes the blood vessels in the scalp restrict the blood flow to the point that the amount of chemo that reaches the hair follicles is greatly reduced. You continue to wear the cap for a couple hours after the treatment has ended to give your liver time to process most of the chemo meds. (For more info: http://www.rapunzelproject.org/FAQs.aspx) The process can cause headaches from the extreme cold, and they suggest wearing warm clothes and using blankets to ward off chill while using the caps.

So, first of all – me being me – I want the chemo to reach ALL parts of my body. Cancer can spread through both your lymph nodes and your bloodstream. The last thing I want is some cancer cells left behind after I go through all this treatment.

There has been one U.S. study so far that claims there is no difference in scalp metastasis (spread of cancer to your scalp) between those who use the products and those who don’t. The companies who produce these products claim that scalp metastasis occurs with such low frequency that it shouldn’t even be a concern.

…Okay, again – me being me here – Isn’t there a chance that there are some cancer cells floating around in your bloodstream, that end up in the blood in your scalp during the chemo treatment? Then after chemo is over, they float back out to the rest of your body and land somewhere else? Probably a very small chance, but still. Why risk it? for hair?! I mean, it grows back!

Also, what a pain in the rear dealing with all that. When I did my first chemo treatment, the last thing I would have wanted is all that extra hassle and possible added discomfort or headaches. Again, for hair? Meh.

Now, I am probably not the average female by any stretch of the imagination. I just don’t have the genes in me that make me care that much about being pretty or feminine. I spend as little time as possible in the morning with my hair and makeup. I didn’t even wear makeup regularly until I was well past my mid-20’s. Too much of a pain. Besides, I’m me. I may not have hundreds of admirers for my looks, but I have some really awesome friends who like me for the real me that’s inside. And those that don’t? Oh well. I don’t necessarily like everyone either. And anyone who judges me on my looks, well… you know, who gives a crap what they think?

So, other than the alien look that I’ll be sporting once I’m walking around with a bald head, I’m actually kind of looking forward to the amount of time I’ll regain from not having to take care of things like shaving my legs, washing and combing my hair, etc. Really, if you think about it- hair can be fairly annoying and time consuming. Maybe I just don’t care that much because my hair is so short anyway, that it won’t take that long to grow back to the length I like. I mean I normally tell whoever cuts my hair that “you can’t cut it too short – it will grow back”. Maybe when the time comes, I’ll care more than I think I will, but I’m doubtful.

Of course once my hair falls out, I’ll be bald until all my treatments are completed, when my hair can then start to regrow. My treatments are scheduled to run until September. That’s a long time of baldness. But, I just can’t imagine myself wearing a wig. I mean, I’m very tactile sensitive. Basically, anything I wear bugs the crap out of me. My friends and family know that I am constantly tugging at my clothing in an attempt to be more comfortable. Wearing a wig sounds like nightmare to me. So I guess if that leaves me looking like a cancer sicky chemo patient for a while – oh well. It just isn’t worth the time and effort to me to care that much about either trying to save my hair, or trying to hide the fact that I’ve lost it. Especially during the times when I’m tired and feeling sick.

As for an update, I am feeling fairly well. I’m eating – again, much less than normal, but eating smaller meals is supposedly healthier anyway, right? I still tire easily, but I feel more strength returning each day. I know it will get worse after my next treatment, but for now my fatigue is manageable. I came home from work today and slept for two hours 🙂 – that helped. I still have these once in a while “head rush” feelings, that also reach my chest. This has been happening since the 1st treatment and is getting better each day. Thanks, as always, to all of you. Your prayers and support mean more than I can say.

How about an eye patch?

Apparently there are a lot of people who get tattoos on their breast after a mastectomy or lumpectomy. I had never heard of it before, and I am not really a tattoo person at all, but the idea is interesting.

(warning – breasts ahead: http://www.theguardian.com/society/2015/may/10/the-tattoos-that-turn-breast-cancer-surgery-scars-into-works-of-art)

I started thinking – if I was a tattoo person and I end up with a mastectomy, what type of tattoo would I get?

And then it hit me- How about an eye patch?

PirateEyePatch

Oops – I poked my eye out! (or breast as the case may be 🙂 )

As funny as that seemed to me at the time I thought of it, I cried later. If you look at some of the pictures of women with mastectomies (more breasts: http://www.ryot.org/photos-mastectomy-tattoos-breast-cancer/842505, http://www.babble.com/mom/in-celebration-of-a-scar-25-amazing-mastectomy-tattoos/), they look quite deformed, like some big claw reached in and grabbed them away. Like some of the photos you see of a person after a shark attack. Scary.

Reagan had a baseball game last night and I sat and talked with a friend about life, breast cancer, being a woman – things like that. She asked how I would feel if I had to have a mastectomy. I guess I don’t know yet. I guess I won’t know until I get there. Pretty certain with my cancer being lobular (it hides deep in breast tissue) that even if it shrinks to nothing from the chemo they will still recommend a mastectomy. It’s not that I haven’t thought about it- it’s just that chemo and other things are looming more on my mind right now.

Will I feel less of a woman? I sure hope not. When I was a teen I was furious that I grew…  well, how to say it? “bigger than average”. Those things got in the way of playing softball and other outdoor tomboy activities that I did on a regular basis. It was annoying to wear a bra, annoying to have them in my way, annoying period.

In high school, my sister told me “Apparently Mom was only supposed to have two daughters, so God only gave her two sets of boobs for her kids. You got one pair, and Wendy and I had to share the other pair!” We laughed at the time and I honestly told her that I would rather have the “half pair”. Guess I may get my wish after all, just not distributed quite the way I had envisioned back then :/

I have decided to stop reading cancer discussion boards. You know, I always tell people here at work that Google is a wonderful thing. Can’t figure out what that error in your code means? Google it! Want to know what the latest and greatest trends in data warehousing are? Google it! Want to know what your chances are that you will live at least 5 years after being diagnosed with cancer? Google it. (But go to the real cancer websites-  American Cancer Society and the National Cancer Institute) Read the stats, prepare yourself for the types of treatments that may come your way, but don’t spend too much time on the discussion boards.

I wanted to read ahead as to what I might expect in chemo treatments- how long would the nausea last? would it get worse with each treatment? – but then I kept reading and reading. How someone felt when they lost their hair. The woman who ended up with neurological issues that still haven’t gone away years after chemo. How another was “cured” and a few years later it came back and she was Stage IV.  😦

I can only be positive and move forward if I stop worrying about what might happen. Cancer has already happened to me. So why worry about that? I also can’t predict what will happen to me by reading about other people. Although most people going through chemo can expect hair loss, some nausea, and fatigue, everyone will experience them differently. Just like Schroedinger’s breast– my knowing the results of my biopsy may have changed the course of my daily life, but I already had cancer at that point.  Worrying as I waited for the results didn’t change anything. I will educate myself ahead of time about my cancer treatments, but not dwell on it.

I have to believe I will be cured and that it will not come back. I can’t dwell on those other thoughts. Why waste time and energy when I could be enjoying my life? No one has any guarantees as to a long life anyway. When my mastectomy comes, I will deal with it then. For now, one chemo down and seven more to go. I can do this.

I am heading back up to feeling more normal – physically anyway. I am hungry and can eat small meals. I am walking each day. I worked from home yesterday and am in the office today. My friend Patty and I walked a slow mile for a morning break. I am tired but I am blessed.

Schroedinger’s breast

A month ago, while we were waiting on the biopsy results, I told Tim, “I have Schroedinger’s breast. At this point in time I either have or don’t have cancer at the same time. It’s when we open the box that we’ll know which alternate reality I am in.”

(Science friends, for reference: http://www.lassp.cornell.edu/ardlouis/dissipative/Schrcat.html

For those who’d like more about this and why the idea is actually abhorrent amongst most physicists: http://physics.about.com/od/quantumphysics/f/schroedcat.htm)

From Wikipedia (which actually has a fun -to-read continually changing explanation of who believes what and why, and how this “thought experiment” relates to the Many-worlds interpretation):

image

Really, what it comes down to is – even though I already had cancer long before we did a test and got the results, it didn’t change my reality until I found out the results. As we waited for the results, the world was still wide open. There was still a chance that the reality I would end up with was a cancer-free life for me. It was just waiting on a “conscious observer”.

Of course, as Penny on Big Bang said, “Um, there’s this cat in a box and until you open it, it’s either dead or alive or both. Although, back in Nebraska, our cat got stuck in my brother’s camp trunk, and we did not need to open it to know there was all kinds of dead cat in there.”

I had all the dead cat pre-warning stink. My first visit to the MSU Breast Clinic resulting in an immediate visit to the radiologist, and a biopsy the next morning. The sympathetic looks from the radiologist and the technicians there. You know at the time, I kept thinking that it was just my usual good luck- that God wanted me to get the results quickly so we’d be able to go to our nephew’s wedding in peace knowing that I didn’t have cancer. You know, one of those warning shots across the bow that reminds you of the good things in life, and to not take things for granted. I didn’t want to believe that it could be real, even though the signs were all there. I just hadn’t opened the box yet.

I felt pretty decent yesterday. Exhausted, but not so troubled by nausea as long as I was careful to eat small amounts and sip my water.  I even had a small grilled burger for dinner made by my wonderful husband. Delicious! Then we took a short walk and visited our neighbors, Shannon and Jason. They have been our closest friends here since we first started building our house over 20 years ago when they came over to introduce themselves and offered to help. We are not much without all those invisible hands around us who help prop us up when we need it. I am thankful for all of the invisible hands in our lives over the years.