Tuesday, September 28, 2010

Day 123 - Tired, tired, tired

I'm tired of chemo.
I'm tired of being bald.
I'm tired of being "sick"
I'm tired of being tired.
I'm tired of not feeling like me - of feeling detached from all of me - of feeling so in tune with me -
of watching to see what happens - of not knowing how I'm going to feel tomorrow - of wondering and worrying and hoping ...


It's the fifth day after my second chemo - and just a little while ago ... meaning, a few hours ago - I started to perk up. Friday, the day after chemo, I went in to work and felt fine. I was so pumped on the steroids - I literally wanted to run down the streets of downtown. Can you picture it - look out hot dog guy - there goes the bald headed chemo patient running in heels up and down the streets of downtown Denver because she just got her dose of monthly steroids. It amazes me how much I wanted to exercise - specifically exercise. But I didn't. After my first chemo I got up and worked out, and I think I drove the drugs deeper into my muscle tissue - medically true or not true - I was hurting the following days. But I refrained this go round - and I didn't have any back pain to really speak of over the weekend. But I did have lots of fatigue. I can't remember if I was this tired after the first one too - maybe I was and the back pain just took precedence, but gosh, I was tired. I had enough energy to get out of bed on Monday morning and shower. That was it. I checked in with the office, let them know I wasn't going to make it in - and I crashed for 4 hours, after sleeping all night. I made it in to work today. I felt better, slightly. Better enough to go in anyway.

I told Mike last night that I wanted to go back to our wedding day. I want to go back to just before we knew what was coming down the pipe. Ignorance - in that instance - was bliss. Plus, it was a super fun day.

Each chemo is different -- my doc tells me. This chemo, in addition to the fatigue, I've been queasy. It's borderline queasy however - not enough to make me heave - but enough to make me feel like I'm about to heave. It's like when you eat too much, and you're too full, and you feel like you could heave but you haven't heaved yet. It's that sick feeling that's sitting on a fine edge - that could fall either way. But unlike that feeling coming after eating a delicious meal ... I've had no delicious meal, just the sick feeling. I'd rather have the meal.

My mantra, and lament, is "I'm halfway through" ...

I'm halfway through.

Thursday, September 23, 2010

Day 118 - Halfway through Chemo!

Got through my second chemo. Not so bad. The pre-chemo drugs made me a little woozy, like before -- but only as they go in. Once they've dripped through I start to feel more present. Today was infusion #2 of 4 ... we're half way through. Now, it's just the ten down days to go and then I get ten good up days again.

Last night was really tough. Mike shaved my head - and I cried. It wasn't as hard as going from shoulder length to the pixie cut, that was certainly tough - and I think it was most likely the toughest step to take. But that doesn't discount the actual shaving to the scalp. I truly just sobbed. I wasn't scared - I wasn't angry - Perhaps it was melancholy? I'm not sure. I just sobbed. It was an odd moment ... but at the same time - it was incredibly liberating. For starters, I feel like I look more healthy than I did when you could see where it was falling out. Second, it's truly liberating - it really is. It's such a free feeling - it's odd and wonderful. I'm not sad about it. I'm hanging around the house without a hat on and I feel comfortable. Who would have thought? It's certainly easier to keep things clean - no clumps of long hair everywhere.

After I showered off the newly clipped hair, I came downstairs and Mike had set the dinner table with candles and had our Valentine's Day playlist going. It was so sweet, I cried. I cried true tears of happiness - He made me feel so special. We had a wonderful, intimate dinner - and we talked about all the crazy dishes that I tried to make in the past that just didn't work. What ever would he do if he married me and I couldn't cook! He'd cook, he says. We laughed at my stuffed peppers - how bland they were and how he packed them for me for lunch one day, and when I came home, he packed my lunch for the next day - the peppers were still in there. I couldn't even eat them, they were so bad. And then there was the pork adobo - it was so incredibly salty - again, not edible. But then there was my couq au vin and my potato clam chowder -- and my incredibly spicy green chile --- he loved them all. He suggested maybe having a vow renewal party in a couple years at my family's house, and having my amazing cousin sing amazingly again - and she has to sing more than one song. And we'd really party all night, and not have to rush off the next day to catch a plane -- not that day anyway. By the time dinner was over, I felt so much better.

We went to Dozen's for breakfast this morning, before chemo. My mom in law came with us today. It was a first for her. I was happy she came. She's family.

When we got home, my co-worker and his wife, who also happen to be our neighbors - stopped by to bring us dinner. I'm glad to have met them, and excited at the thought of new friends in the neighborhood. They're good people - and that's always a good thing to have nearby.

So far I feel fine. I don't feel any different, even though I'm pumped full of chemo drugs and pre-chemo drugs. But, we'll see what the tomorrows bring.

Until then, this is how things are - it's not a bad shave job - it's patchy because spots still had hair - and others didn't ... and we didn't bic it. Mike said, at least -- I had a good shaped head.


Wednesday, September 22, 2010

The Husbands Perspective

Tonight was a tough night. On the eve of my wife's second chemo treatment, she decided to have me shave her head. Her hair has been falling out pretty fast, so she decided it was time. It was tough to watch her tears as I dragged the clippers across her scalp. I wanted to stop, but I knew I couldn't. Its a step I knew was coming from everything I read. But the stories don't do the reality justice. It is a very emotional moment, but I was glad we could do it together.

Afterwards, we shared a wonderful candle light dinner that brought both of spirits back up a little. We talked, we laughed, Tomo howled. We reminisced about special nights we had in the past and talked about special nights we want to plan for the future.

My wife is a very tough woman. During the most challenging period of her life, she still seems to worry more about others than her self. I admire her strength and I am amazed by her selflessness.

Cancer is not all bad... it is mostly bad...99.9% bad... but that small piece that is not bad, is the piece that brings people together. My wife and I are closer now than at any other point in our 5 plus years. My relationship has improved with my friends and family because when something like this happens, it makes you put down your personal crap long enough to focus on what is important.

I love my wife. She is my heart.

Monday, September 20, 2010

Day 115 - Fallout

My hair is falling out ... a lot. It's so odd that one day I can go get it cut and not have a distinct amount of fall out, and not 4 days later it starts falling out in sheets! It's almost absurd how much is coming out every day -- every time I touch it more falls out. Every shower, every swipe of my hand to move my bangs - It's constantly on my shoulders, on the floor ... tickling my back and arms. It's very thin right now and I have noticeable balding spots. My part seems to be getting wider. It's kind of funny. At some point I'm going to have to shave it. At some point I'm going to have just patches and those patches will make me look more sickly than I am. At some point ... I'm going to see myself bald for the first time in my life -- as will my husband.

Right now I'm wearing some knitted cloches that I bought on Etsy. I wonder why I never went on Etsy before to look for beanies -- they're adorable and unique. My 4 scarves came in as well - as did my hat liners and sleep caps. Thank goodness for the sleep caps -- they keep the hair contained while I sleep so I don't wake up to a fuzzy pillow ... well - it keeps most of it contained. I ordered a few more hats from Etsy yesterday, as well. This next order of hats has brims and some are more slouchy in the back. I thought those will help with the empty feeling I'm noticing with beanies. By empty I mean - they are to help with the feeling of having something on the back of my neck. Beanies - I'm noticing - look like swimmer's caps when you don't have hair. I'm not swimming -- so I thought brims and trims and slouchy would help fill out the space around and behind my face. I'll have to do a mini-fashion show and post pictures of everything I bought.

I'm scared to wear the first scarf. It's almost as if - if I just wear the beanies and hats ... I'm not a "cancer" patient. I'm not what people typically see when they see someone who's going through chemo. As if I could side-step the stereotype and bypass the label if I don't wear the scarves. For as open as I am about talking about it -- I'm just as secretive I guess. There are looks ... you see it -- I see it, when I'm somewhere where no one knows me, where no one knows what's going on. The look is of confusion. I see the confusion cross people's faces as I walk by - as if they're not sure what to make of my short, obviously thinning hair, tucked up under a beanie ... a beanie that's about two months early - that's present when we're still having 90 degree days. Every thing else looks fine - my face looks fine, my skin doesn't look sickly - I'm laughing and active, not coughing and curled up or hallow. The only tell of my treatment, my cancer - is my hair. It's like that game you play when you're little - Of these objects, what doesn't fit? I don't blame people for looking confused though ... I would be too. It's innocent enough.

Wednesday, September 15, 2010

Day 110 - Shorter Hair

Since my hair is starting to fall out ... I cut it shorter last night to manage it better as it starts going everywhere. It's definately the shortest I've ever gone in my life. I feel like a totally different person. I catch a glipmse of my reflection and do a double take, or two. I feel like I don't know how to pull it off - it's more sass than I'm used to. But - it's a mini preview of what's to come when it comes back after chemo.

It was Alyssa Milano inspired:



But my bangs are a little longer than her's. Tah-daaahhh:

Tuesday, September 14, 2010

Day 109 - Pep In My Step

Just when you start feeling like yourself again -- your hair starts coming out.

BUT -- I'm really happy that I don't ache physically and that my energy feels normal. I'm on what is (hopefully) the up swing of my last infusion and my blood counts are on their way back to normal. I have to go back in again for my 2nd infusion on Thursday, 9/23, but at least I have about 10 days to feel good, and I'm so happy about that.

We went into the doctor's office yesterday because my Onc asked if she could check me out. I had been emailing with her since Thursday last week -- about my sore throat and back pains and then about the fever. She has spoken to the doctor who took our early morning call when my fever hit so she was aware my temp was on the rise. She checked me out and said that I looked much better than she had expected. She said everything I experienced - the sore throat, the anxiety attack, the fever -- it's all associated with the drastic drop in white blood cells and my body's natural response to that occurrence. The anxiety was brought on by my body's release of a specific hormone in response to the weakened state and she said some women are sensitive to that sudden influx of that hormone and feel the anxiety like I did. The back pain, she said, is a side-effect specific to the Taxotere and that it doesn't last for the duration of the 12 weeks. (Thank goodness!) She gave me a prescription for a stronger pain med for use after the next infusion so I can sleep through the night without the aches.

I woke up today feeling like someone flipped the switch to "Good" -- Good. I'm glad that I feel fine physically so I can deal with the emotional aspect of my hair falling out. It's starting to "release" noticably now -- well ... noticably to me. If I have a firm grasp while I run my fingers through it ... I get more than I bargain for.

I know it's going to come out. I know that, and have accepted it. I'm just not emotionally ready for it to happen. I'm not emotionally ready to go from having hair to having none. I don't have the cahones to shave it and I don't have the cahones to take scissors to it myself. I trust Tracy (my hairstylist) with my hair. She's the only one who's ever cut my hair since I've been in Denver. I trust her to help me to the next step -- which is Mia Farrow, Alyssa Milano and now Emma Watson (below), short:


No, it's not the most logical step -- since it's going to fall out soon anyway -- but it's the emotional step I need. At least this way, when it's time to shave it, I'll be able to summon the courage to do so.

Nervous? Absolutely. My hair has been such a large part of my self-image ... small changes to it are a big deal for me. Large changes are - well -- obviously tough. I'll get through, I know -- but it won't be without a few tears and a healthy dose of insecurity. My scarves and hats are on order and will be here soon. The weather is on it's way into fall and will cool off -- so I'll blend in wearing my hats instead of being noticable. "Wear bald like a badge" they say ... Sure ... I will ... If I wasn't in denial about really having cancer. But I think I was -- am -- I don't know ... But you know me -- I can't do anything the "usual" way so it's only fitting that I get breast cancer when I'm 29 versus the statistical age of 50. So yes, I acknowledge that it's happening ... I acknowledge that my hair is going to fall out around me ... doesn't mean I can't face it like I face everything else in my life -- my way - which is usually a Melissa version of what's expected -- and it's always a version and it's never what's expected.


Saturday, September 11, 2010

Fever

I fell asleep on the couch last night, I was up watching Braveheart. At 2:00 am I got up and went to bed. I crawled in and was just really, really cold. Finally I warmed up and fell asleep. Around 3:30 am I woke up - drenched in sweat - I think my subconscious put it together and woke me - I had a fever.

I immediately got up and took my temperature - 100.5. Crud. Time to call the doctor. This weekend is my Days 8 - 10 ... the point at which my white blood count is at its lowest. The fever is a result of having such a low blood count - my body doesn't have enough white blood cells to defend itself.

The Onc on call said we can watch it and see how it goes - since I didn't have an infection localizing anywhere. She said if I wanted, she could call in a prescription for antibiotics and we could either do that then, or just wait and see how things go. I told her since I wasn't hurting anywhere and since I wasn't experiencing any nausea - I felt OK to go back to bed.

We woke up around 10:00 am and I took my temp again - 100.4. We had breakfast and I laid back down again. I've slept most of today ... and I mean most of today. It felt really nice to get the extra sleep - I think I needed it. The Tylenol Extra Strength seemed to be helping my back pain and it was nice to sleep and not feel it. My temps have been between 99.2 and 100.7. I've been taking Tylenol all day and I think it's keeping things level. We'll see how things are tomorrow.

Day 106 - Anxiety Attack

I had to suddenly leave work yesterday. I was sitting at my desk and noticed it was hard to breathe. My chest felt tight - like someone was pushing on my sternum and my back at the same time - like I was being crushed. I noticed my heartbeat was faster than normal ... I could feel it beating in my neck and throbbing through my fingertips. My head was a little dizzy ... lightheaded feeling. I kept taking deeper breaths - trying to get my chest to relax, but it wasn't working. My hands were shaking ... I knew I needed to leave.

I've never had an anxiety attack before - but I've experienced anxiety - so I knew what was happening. My Onc said that it was a potential side effect of going through chemo, and they gave me a prescription for an anti-anxiety medication up front. I didn't have it in my purse yesterday - I guess I thought I wouldn't need it.

I went into my boss's office and told him that I think I'm having an anxiety attack and that I needed to go home. I started crying. I'm not sure why - I think I was just scared ... unsure about what was going on. This is all so new and every time something new happens - I guess it's expected that it would be scary. I felt bad that I couldn't hold it together - my poor boss has a crier on his hands ... but he helped me calm down and helped me try to get my breathing to relax before I got in the car and drove home.

I made it home safely ... took an anti-anxiety pill and laid down. I couldn't sleep though. I asked Mike to come home. I felt really guilty asking him to do so though. My asking him to come home for me - means I'm putting myself before his obligations at work and the things going on in his life. I'm his wife - I know I'm one of his major obligations -- but for me to actually ask it of him -- was really tough for me. I don't like to insist that I be any one's priority. But he came home, I was glad I wasn't alone. I took a bath and slowly as the meds kicked in, I relaxed.

I'm keeping the meds in my purse from now on.

Friday, September 10, 2010

Day 105 - (Sigh)

I broke down yesterday ... at work ... and drowned my sadness in a philly cheesesteak.

It's been a week since my first chemo infusion and I've already become impatient with the side-effects. I'm beginning to relate to the fibro myalgia commercials. The deep muscle aches in my back are taxing and I need to find something to help. I asked my doctor and she said that unfortunately, the pains don't ever really go away through this. She would be willing to prescribe me something stronger to knock me out, but that it's up to me to determine what I can live with.

I guess I've taken "good health" for granted. I'm rarely with a cold or the flu and I've never had any major injury. I've always felt like I have really strong bones and am usually in overall good health, all the time. I'm not plagued by migraines or imbalance ... I'm pretty much even keeled mentally and emotionally and if I do need a "sick" day, it's usually just because I need a mental health moment and need to re-center myself.

But now - 7 days into this ... I can't fathom living with fatigue or aches like this on a daily basis, for the rest of my life. The fatigue is making me blue ... and the aches are making me nuts. I have a new found respect for people who live their life in constant pain. This phase of treatment is truly challenging my optimistic nature and is making it difficult for me keep things in perspective. It's only 12 weeks ... 11 now actually.

11 weeks is shorter than football season -- it's shorter than 1 quarter of school. It's truly, truly just a blip on the radar. My boss keeps telling me to just keep crossing off the days. I am ... with an emphatic hand.

I'm also keeping a mental list of all the things I want to do when this is over - all the things I want to do when I feel good -- I certainly don't think I'll take my good health for granted again, that's for sure. I know I want to go snowboarding in the spring, and out dancing for my 30th. Hopefully we'll also be able to take another trip someplace warm for our 1st wedding anniversary in April.

Tuesday, September 7, 2010

Day 102 - Everything Hurts ...

Everything hurts ... and nothing tastes good. Water tastes like metal and Gatorade tastes like the ocean. Coffee ... oh my beloved coffee ... tastes bitter and I've not had any for the major part of the extended weekend because of it. Food seems bland and flavors just aren't registering ... but everything smells so strong. It's a strange disconnect between my nose and my mouth. The scent of my own conditioner is even getting on my nerves ... pomegranate.

Any woman who has ever endured the signs of your impending monthly gift will understand when I say - this feels like PMS on steroids. For starters - I'm breaking out ... like a teenager -- my T-Zone, my jawline, my chest and my shoulders. My Onc said this was a potential side effect. Add to it the deep muscle aches ... nothing is comfortable. I can't sit or sleep comfortably. It feels like my spine was used for the first time in years and the resulting muscle tears are deeper than possible. My whole back just aches. I tried Advil yesterday and it didn't work. I'm trying Aleeve today and so far it doesn't seem like that's going to work. Icy Hot worked for a little while yesterday ... as well as cleared my sinuses ... but it was temporary. Sitting in the hot shower felt good, but I don't think my computer would work too well in there ... and eventually the hot water would betray me and run out. And finally the cramping - it feels like my actual stomach and intestines are cramping ... like they want to fall out.

So - essentially my whole torso is affected, front and back. But, the bright side is - today doesn't feel as bad as yesterday - and yesterday felt worse than Sunday. So ... I'm (cautiously) optimistic I'm on the up swing of the first 5 days. I've checked my temperature a couple times throughout the weekend and it was normal every time. My appetite is good, all things considered - and some things taste better today than they did over the weekend.

It's really hard to be optimistic and up beat when you feel like this - but I cling to the fact there has to be a positive ripple effect to all of this. There just has to be. Why else would it happen if not to positively impact something or someone down the road?

Friday, September 3, 2010

Day 98 - Day 1 after Chemo 1, First Expansion in a Month

Maybe it's the 4 doses of steroids .... Or maybe it's because I'm excited about picking up expansion again - but I feel really good today. I woke up at 6:30 am and went downstairs to work out. I ran a mile, danced on the treadmill during the cool down, jumped rope, two sets of abs, did some kettlebell squats and stretched and stretched. After I finished, I went up to shower and get ready for my first expansion appointment in a month. We got there on time - a rarity for me unfortunately - and were early enough to grab coffee beforehand and still be on time when we checked in.

Jessica - the plastic surgeon's PA - checked me out, said the little spot where we stitched up a few weeks ago looked really good and healed up nicely. We opted to expand with 75 CCs this time since I needed two appointments to catch up to the 300 on the right side. We didn't see the need to push it with 100 when I needed two appointments anyway. So I'm feeling a lot better more filled out and not so one sided.

So all in all - I'm feeling much better than expected on my first day after chemo. Nausea is nothing to really speak of - and I'm cautiously optimistic about that. I think last night I might have just ate too much ... I'm entitled! It was Mexican food after all, and I really like Mexican food.

I'm hoing we can head out tonight to a local BBQ fair/festival/competition around dinner time. I'm doing what I can while I feel good. I don't know what tomorrow will bring - but why worry today about what I can't control tomorrow? Mom and I are getting manis and pedis right now - living life like we normally do. It feels good to not be knocked out on day 1. I'm going to take advantage.

Thursday, September 2, 2010

Chemo Infusion #1 - Over and Done

I'm realizing the thing about chemo is that you have to wait. You go in, get your IV and meds .... and then you wait. You wait for it to take effect. You wait to feel something - but you don't know what you're waiting to feel. You don't know if you'll be nauseous or tired or anxious ... you just know you're going to feel something.

We checked in for my infusion and we were a little early, so they gave us a pager -- like at the restaurant. They'd "beep" us when it was my turn. In way it is really comical ... but in another way, it's terribly sad. It's sad because there's really that many people waiting for chemo that they have to page you when a seat's available, even when you have an appointment and check in an hour and a half early. We had lunch and walked back over to the infusion center at 1:15, checked in again, and sat in the waiting room until 1:45. We got a private room for this infusion because all the regular chairs that face the window were full. I'm not complaining that we got a private room, it was nice - there was a bed for me to lay in while I was hooked up, a TV, a lounger and extra chair. It was another half hour before the RN came in and started the pre-meds.

Pre-meds ... the meds they give me to prevent nausea and allergic reactions - 4 syringes: Kytril (for nausea) Benadryl, Pepcid, and Dexametheson (all to prevent an allergic reaction). After all that was pumped in, we started the Taxotere. The nurse walked in covered in a yellow protective wrap and gloves and the IV bag was also covered in a dark baggie. That doesn't look dangerous at all, no sir. He told me it's truly just an OSHA safety measure that he be covered  and the dark baggie was because the drug actually degrades in the light. He did say that every nurse you talk to in the infusion center has at one point worn chemo, so the wrap was truly necessary. Am I sure this was something I wanted to put in my body? But, I did and it dripped for an hour or so. The RN kept checking on me for the first 5 to 10 minutes of the drip - to make sure I didn't pass out or have any sharp pains, shallow breathing or any other reaction. After that 10 minutes, if I didn't have any of those reactions, he said I should be fine. Next on deck was the Cytoxan and that dripped in for about 30 minutes. We finished up and left around 4:45 pm.

During the whole process, I didn't feel anything significant. I felt a little spacey but I didn't fall asleep like they thought I would from the meds. I didn't feel incredibly dizzy or woozy or anything like that. We sat and talked to the nutritionist and learned about the best ways to eat and maintain a steady diet so I don't gain weight during this process. I did have to really respond to her comments and make myself engage in the conversation so I could focus on what she said -- and snap myself out of the spaciness. But I managed and it was fine. I read my gossip mags ... Mike watched ESPN ... mom walked around the garden outside -- it was truly anti-climactic like my doctor said it would be. But now I just have to wait and see what's going to happen to my body.

I'm journaling everything and hoping that will help me identify what's going on with my body. My doctor said I don't really have to do that, but I want to. It will help me.

We came home and Mike's mom brought over dinner. I ate like I normally do because I felt fine. About an hour and a half after dinner while we were all sitting around talking, I started to feel my stomach act up. Some queasiness was setting in. The problem is, I don't know if it's from dinner or if it's from chemo.

So I took my last dose of the steroid and I also took my first dose of Kytril here at home to start managing the "side effects." It's only 4 hours after we finished chemo ... I'm hoping I just ate too much.

Day 97 - Chemo Morning

Got up today around 6:30 am - ready to get this going. I had a quick convo with my resident Pharmacist, thank you Mrs. Bailey!, and felt ready to tackle this. I put on my perfect chemo tank and perfect comfy chemo pant, and off we went to start our day.

I wonder if they'll mind in the hospital?



We hung out at Caribou coffee this morning while Mike had his dental appt. We're at Paradise Bakery having breakfast right now, relaxing, talking and just trying not to think about the rest of today.

I'm tracking everything I eat, drink, take and "do" starting from last night through Christmas. There are so many side effects that I have to worry about that I thought it would be easier to just track everything and let the side effects  reveal themselves to me, than to try to identify them on my own. Plus, it will help me remember when to drink water  to make sure I have enough throughout the day.

So I took the first dose of the steroid last night and I felt no change, which is good. It's suppose to prevent any potential allergic reaction I might have to the Taxotere. I took the second dose this morning and I hope it continues like this.

We're going out to walk for a little while, burn off our breakfast and get some fresh air. There's a chill to the air this morning too, the first I've noticed recently. Summer is either taking a vacay or Autumn is on it's way.