Wednesday, December 15, 2010
Wednesday, December 8, 2010
(Sent from my iPhone)
Sunday, December 5, 2010
I had my follow up oncology appointment last Monday. I must admit - my Onc has a way of talking to me that gets me to let go of any of reservations I have about further treatment and just "try" things. "If something were to manifest itself in a few years down the road, you don't want to wish there was a pill you could have taken to have prevented it" she says. Did you see that? There it goes -- all my gusto about not taking Tamoxifen. Fine, I tell myself, I'll try it. See how it goes. Who knows - chemo wasn't nearly as bad as we were expecting. Maybe I won't have any seriously noticeable side effects on Tamoxifen. We'll just have to see. And in the end, I can say I did try everything advised to me - I did everything I was suppose to do to prevent a metastasis in the future. And if a metastasis happens to present itself - well hell - then it was suppose to. I don't know any other way to look at it.
This Thursday I'll be 5 weeks from my last infusion. I feel good - as close to normal as possible. Things taste good. I'm happy about that. I'm starting to notice other - things. Sometimes it feels like I have swelling or fluid retention around my knees. Sometimes I feel like I could just break down crying. It's overwhelming and it's very strange for me. Yesterday Mike and I were in the grocery store and I was just suddenly sad. I could have broke into tears right then and there in the produce section - for no reason at all. Mike asked me what was wrong - he could see it on my face - he saw my mood switch - and I just asked him to ignore it and I tried to talk through it - keep shopping. By the time we checked out I was better. I didn't feel as debilitatingly sad. Instead I was concerned. I'm very much a level headed, emotionally stable person and to feel suddenly sad like that - is off putting. I don't like not being in control of myself.
Another thing I've noticed is my nails. I have white lines throughout my nail bed - almost as if you could count on them - 1 chemo, 2 chemo ...
Sunday, November 28, 2010
Thursday, as we sat around the dinner table - we took time to share our thanks. Needless to say there were some teary moments. What am I thankful for? It was an easy question with an easy answer - but it wasn't easily put into words. I'm thankful for so much this year. It's been a year of such highs that were only matched by such lows. Mike and I were married this year - remember? Sometimes it feels like our wedding day has been so shadowed by my cancer diagnosis that our wedding day doesn't even feel like it was just 8 months ago. We are still newlyweds -- and this past Thursday was our first Thanksgiving as husband and wife.
If I had to pick one thing, I guess it would be for the opportunity that lay ahead of me. I have so much opportunity in front of me - it's overwhelming. I have the chance to do something good with this experience -- and help other people - and return the kindnesses that were shown to me. I have the chance to take what I've learned and apply it in every aspect of my life. Mike and I have the opportunity to continue to grow as a couple from this experience - and apply some serious life lessons to our new marriage. And really - the simple fact that I have these opportunities -- means that I'm alive -- and that's certainly something to be thankful for.
Things were a little bit crazy coming home from our trip to Boston on Monday night and hosting Thanksgiving 3 nights later. It was a slight whirlwind, but it was totally worth it. Boston was fun - and it was nice to do something away from home and away from work that was 100% unrelated to cancer. It also made me really happy to be there to watch Mike enjoy something that he loves - to watch him spend time for himself, as much as he could anyway, unrelated to my cancer diagnosis. It was certainly well earned, well deserved -- and thoroughly enjoyed. This year it was our turn to host Thanksgiving, and it would have made me terribly sad if we didn't. It would have meant Cancer changed something that we had planned -- a victory for the opposing team.
My exchange surgery is just around the corner now, a little over a week to December 8th. My reconstruction "team" tells me that this time shouldn't nearly be as painful or difficult to recover from as the initial surgery. I keep holding on to that. I don't feel the same sense of fear as I had for my first surgery (not yet anyhow), and I'm not sure why. But - I'm a little tougher now, so maybe that's it.
Wednesday, November 17, 2010
But, as I near the end of the side effects from the last treatment, I can't help but wonder if 4 was too much. Should I have stopped at 3? Did we push it too far? Was it too damaging undergoing 4 treatments, when 3 might have been sufficient? I wonder because my cycle stopped. I'm told that it should start again in a few weeks -- but that's what making me wonder. Things were fine up through infusion number 3. Infusion number 4 seemed to throw everything out of whack. Did I cross a line? Can still have kids? ....And more importantly - will they be well?
We're a few weeks out from my exchange surgery. That's adding to my impatience. I have a date on the calendar and I know it's right around the corner ... and the expansion appointments are only one or two more until we're finished. I'm just ready to have my body back - to be as much of me as I can be, again. I'm told the exchange surgery won't be nearly as physically challenging as the initial surgery. I really hope that's true. The expansions are beginning to hurt now -- for a couple days after the appointment I have tight, sharp pains -- and I can't sleep very well. But we're up to 500 now, and I'll most likely stay there. We'll expand up to 550 so there's a little extra room - but I'm pretty sure the implants will be at 500. Ask me in a week when I'm not having any pain from the expansion and I might have a different answer, but right now - I feel finished. I'm tired of hurting.
We leave in the morning for Boston - we're taking a trip to see the Patriots play the Colts. I'm excited. It's something non-medical related, and I'm feeling up for going -- up for something normal. I had to ask the doctor if I was going to set off the metal detector though ... It's a legitimate question. The expanders have stainless steel ports on them that help guide a little magnet that tells them where to stick me. How do you explain that to TSA? And -- my port-a-cath is still in, and that has a metal back to it too. They said that I shouldn't set anything off though. That's good. But with this new, more touchy-feely pat down procedure they've implemented -- I'm fully expecting to be questioned. The expanders are hard. They don't feel normal by any means. And - what would they see if I have to do a fully body scan?
Ugh - "safely violated" by TSA. Yay.
I'm also apprehensive about being asked to take off my beanie as I go through security. I only walk around like that at home -- inside our home. If I go out into the backyard, I grab a hat. The though of being forced to bare all in the middle of airport security -- makes me feel vulnerable -- open for all to stare at. I know when I'm standing in that zig zagging, switchback of a security line I'm people watching as everyone strips down by the conveyor belt. Why wouldn't they look at me - there's not much else better to do while you're waiting your turn. At the very least - I hope they'll let me pull up my hood -- that is, if they don't make me strip down to my tank top.
But - we're getting there. Things are wrapping up and drawing to a close. And - for that -- I'm truly Thankful.
Friday, November 5, 2010
I still have to endure the 10 days or so of the after-effects of this last infusion, but the thought of it is easier to deal with knowing that I don't have to do it again ... at least not anytime soon anyhow. The Nurse Practitioner started talking about the emotional impact of finishing chemo and consequently coming into the Oncologists office less and less often - being monitored not so closely. It naturally raised worry ... the "what ifs" - what if we missed something? What if there's a recurrence? How do we know it will be "OK" ...
It's another leap of faith - that's what it is. Like the leap of faith I had to take with my Oncologist and not freeze my eggs prior to chemotherapy. It's a leap of faith that I'm going to be OK. It will be just as difficult to take, if not harder. I won't be actively doing something to make sure the cancer cells are at bay, or dying off - that is - if any survived the 4 bombs we set off in my body. And that's another thing we're just going to have to trust to faith -- that chemo did it's job -- that during these 4 rounds all the potential cancer cells that may have remained were actively dividing and thus impacted by the chemo and killed. What are my odds of a distant metastasis? What are my odds of local recurrence? Even though there isn't suppose to be any breast tissue left, there's always the chance that one cell remained - or that there's a recurrence in the scar tissue. Or that one cell snuck out of my lymph nodes and is floating around in my blood stream and was lying dormant during these last 8 weeks.
But these aren't things I can (or really want) to think about right now. My exchange surgery is on the horizon. 5 weeks until surgery -- another close to another chapter. Reconstruction has been going well. Not much more to go right now. I'm looking forward to being through with this phase as well. I'm looking forward to sleeping comfortably, most of all. It's progress - I'm moving forward in my life - and I'm finally able to check things off my compartmentalized approach to dealing with a cancer diagnosis. Thank goodness.
Monday, October 25, 2010
keep asking Mike (in my whiny, feeling defeated voice) if I have to do
the last treatment. "3 is better than none, right?" I say. I wonder what
the odds are that my Onc will say, "You know, you've done so well with
the last 3 treatments that I don't think you need to do the last one."
Like it's a reward for good behavior or getting my homework in on
time... or for not puking thus far into treatment. Mike always hugs me
and reminds me that I've come so far - and that I'm almost done, it's
almost over ... and that it's just one more.
So, 10 more days of ickyness left in this phase of treatment. He's right
- I've come this far. But how far is it really? I counted out the days.
My exchange surgery is day 193, which means one week after surgery
(which should be an adequate amount of "recovery") is the 200th day. 200
days of breast cancer. Could it really be that quick? 55% of a year. A
little over half of 2010. I never thought, as the new year turned over,
that I'd be spending half of the upcoming year battling cancer. And
really, from this side of things - that's really a misstatement. To me,
I'm not really battling cancer ... I'm battling treatment. If you think
about it, it was a lump, that was caught early, that gave no indication
of its presence, other than being palpable, and it never made me feel
sick. In that scenario, what is there to really "battle?" Treatment - on
the other hand - is quite the battle. Recovery from major surgery - an
amputation - a removal of a body part. The relearning of muscles that
are now in a new place and the regaining of strength in those muscles --
which extends beyond bench pressing. Opening the lid to a jar is a whole
new experience because you don't realize how much of your chest muscle
is used until you can actually feel the contraction of the muscle like
you do when it's put into a new, permanent position. And the battle to
get through chemo - well - it's a war on your system. Period. In the
early stages of cancer, Cancer wasn't really much of fight at all --
it's the surgeries and medications that are the heavyweights in the
ring, and you have to take them both on at the same time in order to
earn your belt.
Treatment is truly the physical and emotional battle that one has to
worry about with early stage cancer. But I've almost done. This part of
the battle is drawing to a close. And it's sad really, because there are
no winners when it's over. Yes, I've survived treatment and "should"
have many long years ahead of me. But there is still no cure - and
beyond that - there is no guarantee to years of life to come.
It's hard to think of Cancer as a gift - but in many ways, if you
survive it - it is. It's a perspective shifter - an outlook on life that
you couldn't possibly have without it coming into your life to start
with - for survivors and supporters alike. It's been a big month for the
Susan G. Komen foundation - an organization started by a supporter, for
her sister who didn't survive it. It's had a huge impact on a newly
married couple - testing their vows right out of the gate. A gift of
perspective - and a healthy dose of it. I see our future with new eyes,
with a new respect for the people that are important to me and with a
deepened sense of appreciation for the new day. I have an increased
willingness to take risks and face challenges ... to experience new
things. A heightened desire to do the things that I want to do, and to
do them now - and not put them off. All, not because I've "brushed with
death," because that certainly didn't happen but - because of the
indiscriminate nature of the beast.
thankfully. There was a lot of waiting this go round. We showed up 30
minutes early for the oncology appointment and were first seen 30
minutes after the appointment time. And that was only after we flagged
someone down in the hallway to ask what the deal was. By the time we
needed to be checking in for chemo - we were still in the exam room,
just beginning our conversation with my oncologist. Consequently - we
were 30 minutes late getting on the list for the infusion center, waited
another 15 before getting called in and set up. Once I was plugged in,
my sister had to flag down the chemo nurse to tell her my bag was done
on multiple occasions. We didn't end up leaving until 6:00 pm. Mike and
Maria were handing out delay of game penalties to just about everyone
But we got through it - and left all the nurses intact. We're all ready
for it to be over.
Sunday, October 10, 2010
But - since I have the wig, I thought I would put all the pictures together to show the progression of the "hair" ... so here they are!
|The Donation Cut|
|The Pixie Cut|
|The Wig, Courtesy of the American Cancer Society|
|And, the back of the wig, just for fun!|
The other day I was watching the Today Show as I was getting ready for work. Every morning, they have Willard announce "Happy Birthday" to those are celebrating their 99th or 100th birthday. The other day there was an announcement for twins ... sisters - who were turning 100. They said they spoke every day. I thought to myself, that's how my sister and I will be ... old and still calling each other every day ... if not living together.
Happy Birthday Maria!!! I love you! See you soon!
Sunday, October 3, 2010
This infusion period is very different than the first round. No aches or pains this time through, just the fatigue. No anxiety attack or fever, just a lazy weekend spent waiting for a fever that never came. GI side effects were more noticeable this time around, but nothing a Fiber One bar couldn't cure. The breakout I had this time - I think came from wearing my hats. It was just on my forehead and scalp -- irritation from the various types of yarn my crochet hats are made from. And - thankfully - like round 1, no irritation in my mouth except the burnt taste buds. Dairy and sweet flavors - all wonderful things for my waistline - taste good. Salads tasted bitter last time and I haven't yet tried them this time through. I'm waiting until things start to taste good again and then I'll swap out some of those dairy laden foods for a salad. I'll keep the ice cream though. It's a must.
I was poking around the breastcancer.org forums and it always astonishes me at what I find. Perhaps it's because the experiences are so "bad" that the contributors are compelled to air them out somewhere - but I'm always caught off guard at how bad it is for some women. Am I just that lucky? Or did I just ask enough questions that I'm not surprised when something happens? Or is it as simple as I paid attention to what the doctor's were telling me? I read along in a forum that discussed my type of chemo regiment - the cytoxan and taxotere, 4 times over 12 weeks - and found a recent post by a woman who was in her early 40s who was getting ready to start her treatment. I instantly felt compelled to respond to her post. I wanted her to know - that amidst all of these "scary" stories, there is one that wasn't scary. There is one woman who isn't having it so bad. That I'm here, going through it - living with it - just fine.
I try to remember that the women who post their gripes and scary stories all over forums are so affected by their treatment, that they almost have no choice but to post. That they must feel so helpless and frustrated and alone ... that by posting into cyberspace, they're actually asking for a sympathetic response. They're looking for someone - anyone - a sister and stranger - to reply and validate them. To tell them that they aren't alone.
I can't express how lucky I am, to have the support system I have. My family and friends are more than amazing and more than supportive and are holding me up through this. They're making this whole process, not so bad.
I was telling Mike the other night that I was feeling a little insecure about going out with my girlfriends this coming Friday night. I'm going to be the girl in the scarf in a group of young women out for a night on the town. It will be the first time since I've shaved my head that I'm going out "out" - with the girls - out for a fun night. But after reading those forums today - I'm okay with it. I'm thankful I'm feeling well enough to be able to go out with my friends. So I'll be covering my head - oh well. There are worse things.
Tuesday, September 28, 2010
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
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
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
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
It was Alyssa Milano inspired:
But my bangs are a little longer than her's. Tah-daaahhh:
Tuesday, September 14, 2010
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.
Saturday, September 11, 2010
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.
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
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
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
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
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.
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.
Monday, August 30, 2010
Saturday, August 28, 2010
I'm realizing that I'm really cold at work now. They have the AC blasting inside the building and I assume it's at the same level it's always been for the past two summer seasons. What is not the same as it's always been is the length of my hair. I guess I didn't realize how much it helped regulate my temperature and keep me warm. I'm finding my hands get so cold in the office that it makes it hard to type. I guess my hair kept the rest of me warm in the past, so my extremities never really got that cold. It makes me wonder if everyone with short hair gets cold easily? Or is it just me - since I'm a short hair novice? At any rate - this winter I'm assuming it's going to be really cold for me ... but that's where this website comes in: http://www.cjhats.com/.
I found this site because I was looking for "chemo hats" If you know me ... specifically, if you know my shopping philosophy - I want quality stuff for the right price. I almost have a size to price ratio, if you will. For example - a cute pair of strappy heels should not cost as much, or more, than a cute pair of pointy toe pumps. Why? Because there isn't as much material! Plain and simple - I don't care whose name is on the shoe - ("Russian components, American components - ALL MADE IN CHINA!" -- Armageddon anyone?) I don't think it makes sense to pay more, for less material. It's silly. Full knee high boots? Yes, those should cost more because there's a ton of material. And unless they're on dramatic clearance - you should think twice before you pay a super low price for boots. That whole -- "if it's too good to be true ..." philosophy. Conversely, if I do pay a low price for something - I do it because I don't expect it to last very long, and I'm OK with that. And if it lasts longer than I thought it would - well then score! It was a good deal.
Anyhow - I found this site - and not only is the cause a great one - but the prices are right. My caveat - I have not yet ordered any, so I can't speak on quality just yet - but if the quality is as expected (and from what I see online, I expect it will be. Did I mention I'm also great at online shopping?), then yes - this is a site that falls neatly into my shopping 101 rationale. And to top it all off - this is the ONLY site I've found for "chemo hats" for women - that makes stylish looking hats that would work for women who are - say 29 - and not in their 70's. Just because I have to do chemo at 29 doesn't mean I have to sacrifice my style. And I'm not saying women in their 70's sacrifice their style -I've met some really hip 70 year olds - what I'm saying is - the styles are just vastly different.
There are a few on here that I really love - and I think when the time comes, I will order 4 or 5 of the scarves, a couple night caps, a few of the 3-band chemo hats and a few hat liners (It is football season after all, and I can't not wear my favorite Boston hat to watch the Patriots games) ... and most likely more since I like to accessorize.
So hat's off to you CJ Hats ... you'll see my order soon.
By Thursday last week, I was tired - emotionally and physically. I felt drained and unmotivated. Sleep was escaping me - and that is torment for me. I have never had any issues sleeping. I can sleep anywhere, anytime, after any amount of sleep I may have had already - I can still fall asleep. I like sleep. I'm good at it. But last week it started becoming harder. I just couldn't get comfortable so I'd toss ... and toss and toss and toss. I'd lay there with my eyes closed prepared to fall into my natural rhythm with sleep and instead of falling asleep, I'd listen. I'd listen to all that was running through my mind and I couldn't turn it off - tune it out - or calm my thoughts enough to let myself fall into sleep. And I wasn't thinking about anything in particular or specifically about chemo - which was more frustrating because at least if it were that - I could work toward making more peace with my decision and eventually that would lead me to a calm state - and I could fall asleep. But lately it's nothing special and no position is comfortable. Point blank - tissue expanders are hard. Period. And that hardness makes it tough to be comfortable - especially when you like to fall asleep curled up into a ball, on your side. Impossible. OK - not impossible, but really darn hard. And especially frustrating after feeling "healed" from surgery and like I should be able to sleep however which way I want.
After the weekend I feel great, rested and ready to go in to the next week - but by the time Wednesday comes around - my energy is waning and my frustration is growing and the glow of my spirit is flickering.
I told Mike two nights ago that I think I'm teetering on the edge of depression. I haven't had my major meltdown that should have come with the decision to do chemo - and maybe the suppression of those emotions is causing the sleeplessness. Maybe I just need to sit down and cry and get it out and over with. I'm not "depressed" clinically speaking - but I am feeling deflated. And all of this very well could be the effects of the lack of sleep. I just keep telling myself that it's only until the end of the year. It's only 4 months that I have to deal with this. In 4 months I'll have my "exchange" - the softer, gentler, kinder implants will be in and at last, I will sleep a deep, long, restful sleep - that is comfortable. I really can't wait, and what a great Christmas present that will be.
What's weighing on me about chemo? I don't want to look or feel sick. I don't feel "sick" - and I haven't looked sick throughout this whole process. Undergoing chemo could very possibly land me in the "cancer patient" category to the outside world. I don't identify with that label. I can't -- because I don't understand it. I don't consider myself a "cancer patient." I don't feel like it's that serious. It just feels like regular doctor visits and regular steps to ensure my health. And maybe I'm in denial about my diagnosis and maybe that's because I feel fine. But it's plaguing me that I'm going to actually feel, and look, sick - in order to NOT be sick. It's such a paradox and I'm having difficulty accepting the underlying truth.
But (sigh) - regardless ... the show must go on. At least I have the perfect outfit for opening night.
Wednesday, August 18, 2010
We start chemo on Sept. 2 and we have expansion on Sept. 3. My blood counts are anticipated to be at their lowest around Day 10 after each infusion - so it's at this time that I'm most susceptible to getting sick. But after Day 10, things start to go up again and I start to feel better, just before my next infusion. I'm hoping we can work the expansions in around Day 15 or so and then maybe again the day after the next infusion. This would give me something like 2 weeks on, 1 week off. If everything goes according to plan, and I bounce back after each infusion like I should, my last infusion will be November 4th. By Thanksgiving, I should be on the up swing of the last infusion and feeling much better (meaning, okay to feast!). And, this will give me all of November, and some of December, to recover before we do my final surgery to swap out the expanders for the implants. Not such a bad Christmas present! By my 30th birthday in March, I should be feeling like myself and the side effects should start fully subsiding - and hopefully I won't miss snowboarding after all! April 10, 2011 ... our one year wedding anniversary ... this should all (for the most part) be behind us, and we'll hopefully have a 2nd honeymoon where we can do-over this first year properly and cancer free.
This is the plan anyhow ... the ideal plan. My hope is everything goes smoothly and if we have to deviate from "the plan" ... it's only slightly and we get back on track quickly, without much lost in the process.
It makes me feel better knowing that there is a plan - that the steps are laid out and all we have to do is cross them off our list as we accomplish each one. It's nice to have some direction, even if it does involve chemo, at least it's a direction - with defined steps ... defined goals.
I think a mini celebration is in order each time we complete an infusion .... something to say "hooray! one down, X to go."
At 11:30 yesterday we had my follow up visit with the Oncologist to give her our decision and what not. Well, my haircut obviously gave it away -- so we jumped right in to talking about the process, going over the details, getting all the prescriptions, meeting with nurse, going over what was essentially a chemo side-effect handbook and getting all the appointments scheduled. As we dove into the nitty gritty of chemo - I could feel a lump developing in my throat ... tears starting welling in my eyes and I couldn't get close enough to Mike. As we worked through the handbook, it made things feel very real. It's one thing to make the decision to do "chemo" when you're blissfully ignorant of the rest of the side effects in addition to hair loss and maybe nausea ... but once you start talking about what's really going to happen - what you have to watch out for during the process ... when you have to call the doctor or nurses ... what's an "expected" side effect and what's not - it's seriously daunting.
Pat, the nurse, kept flipping through page upon page of this notebook reviewing all the different side effects of each chemo drug. Next, she gave me, and reviewed, 5 different prescriptions that are used to manage the side effects of the chemo drugs, and then went over the individual side effects of those drugs.
I'm seriously going to need a pill box labeled: "Nausea A", "Nausea B, if A doesn't work", "Anxiety", "Constipation", "Steroids" ... No wonder it's called CHEMO! Chemicals, chemicals, chemicals ....
I'm going to need to go into detox after this is over.
When she finished and left the room, I just closed my eyes and breathed. I exhaled a long, slow breath -- fluttered my eyelids in an attempt to hold back the tears - and just nodded my head when Mike asked if I was alright. He asked me why I'm so strong when they're in the room, but the minute they leave, I fall to pieces. I told him I had no choice when they're telling me everything -- I have to focus. If I let my emotions take over, I won't be able to hold on to what they're saying and I need to understand.
Before I could truly lose it, plastic surgery walked in and we started our next appointment. They removed the 6 stitches, said things "look good" and we said a little "good vibe" prayer to that spot that is slow to heal. But we didn't expand. We're going to wait two more weeks before we start expansion again on the left side to really give that spot an opportunity to heal up before we ask it to stretch. It certainly does look better than the last time they took out the stitches, so I'm hoping it stays that way.
On our way out, we scheduled the next round of appointments - the chemo appointments - which take us into November. Two appointments for each infusion - the Oncology appointment where they draw my blood, run their tests and give me the green light for my infusion and then the actual infusion appointment, where I get my chemo cocktail. Too bad "infusion" and "cocktail" don't apply to vodka ...
We walked through the "Infusion Area" so I could see the environment ... we only went halfway before I told Mike I wanted to leave -- Everyone in there receiving their infusions .... truly looked sick ... like yes, they needed to be in the hospital. I can't identify with that - especially because I don't feel sick, at all. Of all the steps throughout this journey, this seems like it's going to be the most difficult. Hopefully - it's not so bad and I just get some cute hats out of the deal.
Wednesday, August 11, 2010
Cutting my hair is - I would say - the second step to accepting chemo, with the first obviously being choosing chemo as my treatment. How many more steps there are in this process I'm not sure, but I knew that I needed to take this one myself, before it was done for me.
Dealing with this is going to be on my terms - my choices - and I won't be dictated to by the doctor's or by side effects or whatever else ... Yes, I didn't have a choice in having cancer, but I certainly have a choice in how to deal with it. And I'm not about to let that go or miss an opportunity to make peace with the process in my own ways.
A little bit of my philosophy, if I may ... everything is a choice. And I mean everything - attitude, mood, emotions, perspective ... lunch - it's all a choice. I know there are things that are beyond our control that dramatically affect how we feel or how we perceive things - and sometimes it's impossible to choose to feel differently when we're involuntarily thrown into experiencing those unwanted emotions or negative perspectives - but that doesn't mean we can't still try.
But why try, right? Try because no one ever wants to feel anything negative. Try because it's your life ... and your life affects all those around you, all the time. I don't mean "be fake" or false or ignore what you're feeling - by no means don't ignore your emotions - but make the effort to put yourself in the state of being that you prefer to be in ... which for most people, is happy. If that effort means finding the silver lining and holding on to that with all your might - do it ... find the positive in the negative ... and if you feel like you can't find the positive ... then at least find a way to accept that which you cannot change ... and make your peace ... and in that peace, I promise - you will feel better and you will feel better because it was your choice.
So for me - my positives (thus far) in this whole experience are 1) I can help others by participating in clinical trials and allowing doctors in training to listen in on my appointments and learn from my case, 2) through this blog, I can help someone out there who is 29 and also recently diagnosed, who is scouring the internet trying to find information that is relevant to her age, and situation, and 3) I can donate my hair to help someone who is in chemo and lost her hair or who's hair never came back after chemo. For me - this whole experience allows me to help the future, the present, and what's already passed .... that's not a bad silver lining.
So why waste good hair? I'm going to lose it anyway so might as well give it to someone who can use it. It makes me happy to help. So here's the new "a-symmetrical do"
Monday, August 9, 2010
Every year for the last 5 years, we play in the March of Dimes Mudd Volleyball tournament the first Saturday in August. This year, I had to sit out and cheer and play referee, but nonetheless, it was still really fun - and really dirty. The single day event raises over $200,000 to support healthy babies. Our "Team Melissa" captain, my hubby, raised over $1,500. Mike named the team in my honor since he knew how much this event means to me. He also designed and printed T-Shirts to show our team support of breast cancer, and his support of his wife.
What a wonderful husband I have.
The tournament is round-robin style, 5 games each team, 6 teams to a court, 50 courts and over 4,000 people playing and spectating. Lots of beer and food and great fun. We made it to the 2nd round of playoffs before we were eliminated - that's the farthest we've ever made it in 5 years! I can't wait until next year!!
THANK YOU to everyone who donated and supported us, and a thanks to all our teammates:
Mike Bingham (El Capitan), Mike and Jessie Bailey, Dolores Carrillo, Keri Dugan, Samantha Halliburton, Denise Leon, Dustin Prichard, Jesse Cowan, Nic Jones and "Grif" (Photographer extraordinaire)
Here is our "clean" team picture:
And ... our dirty team picture:
Friday, August 6, 2010
I'll start backwards. We left the appointment feeling encouraged. It wasn't what I was expecting to feel - at all - leading up to the appointment. I expected to feel really sad, or maybe even really happy - but not encouraged, so that was nice - and unexpected. But that seems to be the effect my medical oncologist has on me. She has a way of explaining things to me that is comforting, reassuring and most of all - trustworthy. When I listen to her, I feel like she hears me, understands me - and more importantly - cares about me. Not just as a patient - but as a person ... She respects that I have my own opinions and feelings - and doesn't condescend my questions or information just because I read it on the Internet, or someone told me about it -- she talks to me - to us ... as she is always sure to include Mike in the conversation - and she talks to me like I'm a person, not like I'm not a doctor.
She told me my pathology had a few things in it that concerned her to the point where she felt I needed chemo. First and foremost, the grade of the tumor was a 3 out of 3 - the most aggressive ranking a tumor can receive. This is common however - in younger women who get breast cancer. It's rare to be under 30 and diagnosed with a "nice" tumor. Second, the simple fact of my age was a concern. (The YSC reports that breast cancer is the leading cause of death for women 15 to 54. ) Third, she said that pathology reported "lymphovascular invasion." The way she described it was like this - The lymph node was the exit, and even though the cancer cells didn't make it there, they got on the on ramp. So, they were on their way. They were moving. Invading ...
When I read the pathology report in its entirety Tuesday after we got home from the plastic surgery appointment, I saw those same words -- "lymphovascular invasion" -- it rang a bell. Something else was being invaded.
When she confirmed my suspicion about what I read in the report - I felt something click. I knew I had to do something in addition to the hormone blocker therapy - in addition to the Tamoxifen. It was moving.
She knew before coming in to the exam room that I wasn't on the chemo bus. So she gave me another option. Absolutely, the hormone blocker therapy is needed for a total course of 5 years - my tumor cells feed and grow on the hormones my own body produces, I have to. In conjunction, the possible second treatment in the regimen, she offered me what is popular in Europe, "the European standard", as they don't use chemo as much as we do here in the states. It is a quarterly shot that I receive that shuts down my ovaries - and puts me into a clinically induced menopause. By doing this, I don't produce the hormones that feed my cancer cells. This induced menopause is also a 5 year treatment.
OR, I could opt for the U.S. standard of treatment, which is chemo therapy. She said the chemo she would prescribe for me is a more modern method of chemo, it's 12 weeks and 4 doses, spaced 3 weeks apart. The drugs are "Cytoxan" and "Taxotere" (also seen as CT or TC). I would lose my hair and may have irregular periods, or even a clinical menopause, but after chemo is finished, my periods should return just fine. And my fears about chemo and infertility - she assured me that unless we were already having issues, I should have no issues, no long term side effects -- no harm -- to my ovaries and potential children. I would have the "normal chance" of having a normal, healthy baby.
Given the options, I'm 99% sure I'm choosing the chemo. It's shorter, effective and then over with, hopefully as quickly as it came. I want to be here to experience my children - watch them grow and have their own babies. My cancer didn't just stay in the breast tissue ... it was moving. If it didn't invade the surrounding tissue, this would be a different post - but it did. So that changes things for me.
She wants my stitches to be healed up before we start, so I see her again on 8/17 along with the plastic surgeon, to remove the stitches. If they're healed and things are "ok" we should be starting chemo at the end of August and working in expansions when we can, when my body can handle it. 12 weeks puts me into Thanksgiving and Christmas. Starting the new year with chemo behind me, sounds kinda nice. We can then re-focus on finishing reconstruction and starting the Tamoxifen. I'll be 30.