Good news today. I saw my oncologist and he said I don't need to come back for 6 months - what a deal! This is longer than my standard 3 months and is another milestone in my mind.
I'm a bit unsure what to write anymore as I don't have much important "cancer" info to share. I feel a bit like if I change topics and talk about this "great new band" or this "fun new thing," that I'm somehow cheating. So - I'll just start somewhere.
Life got busy. Again. I knew it would and welcomed it with open arms. With "Gusto," I would argue. I threw myself back into work and friends and activities that make me smile. I met great people and did fun things and drove to new places and took some pictures (for proof, you know, that I actually did these things).
I have been on a regimen of 3 month check up appointments and continuing the Tamoxifen and Zolodex and all was routine. This fall, my energy level began to wane and I started getting more stressed out, which then freaked me out in relation to being sick. I thought about what my energy level was like before I was diagnosed and thought that there must be a correlation. That somehow, being low on energy must signal that my body is getting sick again. Or that maybe it was working harder to combat cancer cells. I don't traditionally have a hypochondriac streak, so I wonder also if maybe I'm crazy. Or what if I'm crazy smart because I can feel the cancer in my body? I read that dogs can smell cancer, so I also tried to psychoanalyze little Bixby every time she curled up just a little too close or looked a me a little funny.
So I called the doctor's office and asked a ton of questions about "why was I tired? Why had I gained weight? Why did I have a dent in my thumbnail?" (Context required: Nana had Reader's Digest magazines in the bathroom and when I was 7 I read that misshapen fingernails were a sign of cancer. I still, to this day, check my fingernails for abnormalities. So dumb.)
They took pity on me and set me up with a PET scan and blood work. I'm low in Vitamin D again (like every other person in MN), but all else was well. The PET scan, though, nearly killed me. The scan was fine. But I couldn't have sugar or caffeine for 24 hours prior to the scan, which sent me into withdrawal. And I'm not kidding. Not the caffeine, but the sugar. It wasn't pretty.
The scan came back clear, but there was concern about a spot on my kidney, which had changed a bit since it was first noted. My doc thought it best to schedule an ultrasound for the next day, during which they couldn't locate it correctly, so it was recommended that I have an MRI to locate and figure it out. I am happy to say it is a normal cyst and nothing to worry about. But, I am glad that we checked.
Today my doc showed me all the scans (those 6 pack abs were totally visible on the MRI when you got that far in, just sayin') and said I look awesome. No cancer here, there, or anywhere. He then said I can come back in six months. So - I of course am thrilled, so I of course started to cry. And then laugh when he looked concerned and cracked a joke about missing him. So I guess I'm good.
I hit that in another area of my life recently as well. When I lost my hair, I kept thinking that as soon as it was as long as I used to wear it, this crap would be over. I want to look just like I did before everything changed. Last week, I realized that I'm there. I can tuck it behind my ears and put it in a ponytail - the two requirements for hairs living on my head. It's still very different - curly and darker - but the curl is starting to loosen and I just added a few highlights last week. When I pulled up my blog tonight, I noticed that it's the same length as my picture. I win.
What I didn't think about was how I would be a different person with that hair. In my mind, getting back to the same length of hair would somehow mean that everything was over - that all the challenges from the past few years would suddenly disappear and I would wake up fresh and carefree. That maybe all the bad crap would be filed away in a history shoe box in the closet and I wouldn't have to think about it unless I wanted to.
But I don't think I want that. I am proud of so many things. I am proud that I handled this like an adult and took care of business. I am proud of the amazing people that I have in my life and how lucky I am to be a part of theirs. I am proud to be 34 - I am proud to have lived the life I have been given. This cancer is a huge part of what makes me proud.
Jeez. This is like therapy. "The crying! Always, with the crying."
Today I got a phone call from one of my very best friends. She got a phone call today that she has Melanoma. She is reeling. She is going to schedule the appointments, the tests, is preparing for all the shit she watched me go through. And my heart just sank. She's scared. And I totally understand. She's nervous and thinks she's worrying about all the stupid stuff like getting sick or dealing with treatment and not worrying about the important things like fixing it. And I totally understand. And I want to hug her and fix this and somehow make it so that this just isn't real. This isn't fair. It's just not fucking fair. And she is going to come out swinging - not let this move a second farther. Whatever needs to be done, she'll do. Because that's just what you do.
We talked about being angry. There's this thing with breast cancer where the likelihood of getting cancer is higher if you haven't had a child by age 30 (roughly) and neither she nor I have had them. Is this some sort of sick punishment for not having kids yet? I don't think it is - but I've thought about it for a long time. She's freshly pissed, so she thinks maybe. We cried alot. Talked about what to expect and what steps to take and the task of getting a good notebook to keep everything in - notes, questions, business cards, all the detailed minutiae of having to deal with new stuff.
We are alot alike and have many of the same sayings and familiar pauses in our conversation. We had a lull in the conversation and she sighed, "What a deal this is."
I thought for a minute and whispered, "Ya, what a deal.
Monday, January 23, 2012
Monday, October 11, 2010
My Last Treatment
Today is my last day in the chemo room – my last day of Herceptin treatment. I’m excited for this to be over, and can’t believe it’s been a year. The past few weeks have been full of “one year ago today…” thoughts. I found out about the cancer a year ago September 22nd and my surgery was a year ago on October 5th. This September 22nd I went to a Twins game and an Arcade Fire concert. This October 5th I worked all day and went to a meeting for the Boys & Girls Clubs. What a change in a year.
October is Breast Cancer awareness month, which I realized last year. I had never noticed before that there was a breast cancer month – I didn’t pay attention apparently. I wondered last year if that was the first breast cancer month in history, because how could I not notice it? It’s everywhere! This year, I am hyper aware of pink, pinkness, pink scarves, pink labels, pink ribbons, pink everything. I will always be aware. And I will always be grateful.
A great deal has happened since my last blog post in April – apologies for the long delay. I was so busy living “normally” again and cancer took a back seat to my everyday life, which isn’t quite as interesting. I had work conferences in May, August, and September and spent the summer finishing up my Masters in Business Administration at Hamline University. I submitted my final papers in September and found out last week that all my grades are in and I’m done. So, that wraps up 2 years of grad school and opens up my time a bit. I’m very happy to be done.
Let’s see…
In June, I had genetic testing done to see if I carried the Breast Cancer genes which would indicate that my risk for ovarian cancer was significantly higher. The tests came back negative, which was a great relief. I get to keep the little suckers. Also in June, I had a compression fracture in my arm, which was annoying, but my own fault. On July 16th, I had my reconstructive surgery. They removed the tissue expanders and put in the silicone implants. They are much more comfortable although I’m still getting used to them. My scars are healing nicely, and will be touched up a bit (I hope) this week. I am getting nipples on Wednesday, and the doctor mentioned that he could clean up a few spots that bother me (honestly they aren’t that big of a deal, but they’re mine and I would like them to be as clean as he can get them).
I was debating whether or not to get nipples. I was thinking that I would put them off for awhile, but during an appointment, the doctor said that if we scheduled everything now, I would be completely done by the end of the year. Sold. I didn’t realize how badly I wanted this to all be over until he said I could be done by the end of the year. Done. Finished. It’s hard for me to believe, but I will be passed all the invasive, uncomfortable, and visually obvious aspects of breast cancer and can cycle back into my “normal” life, whatever that will be. It’s been a long time since I wasn’t thinking about cancer, treatments, grad school, work, selling/buying a house, moving, etc.
I keep thinking back to my 30th birthday and how different my life is now. My life itself is almost unrecognizable – my last name is different, my house is different, my body is different, my hair is growing back in a different color and curly, I earned a masters degree. I have new friends that I didn’t know when I was 30. My priorities have shifted a bit – I will continue to learn more as life happens, but there are some core aspects of who I am that have become stronger as well as a few that became less significant. When I think about how the past few years (the last year specifically) have changed me, I feel stronger, more solid. I feel more confident in a myriad of ways, as if I really can do what I put my mind to. So much of it seems to be perspective. I think I have a new perspective on some things – different than what I had a few years ago. I think my 33rd birthday will be my favorite yet.
I met with my oncologist today – he wrote me my third letter. He laid out the future appointment schedule where I will see him every three months for about 2 years, then every 6 months after that. He told me I could get my port out as soon as possible. I knew that would be coming out soon, but sitting in his office, I had a sharp pang of attachment – another thing that would be removed from my body. I had an irrational, sudden need to keep it exactly where it was. I’ve become used to it, attached to it, and familiar with how it feels under my skin. I love the way it makes my treatments so easy and painless and routine. I am going to have to get used to the idea of not needing it anymore. So, I’m getting it out in November. Why am I crying over a port removal?
The nurse just came over. “Wow. You’re totally done!”
I am going to miss everyone who works in the Chemo room – they are amazing people. The patients I have met here have shared stories with me and I believe that my life is richer for knowing them. I came to view my time in this room as my own personal time to simply sit still for while and either get something, or sometimes, nothing done.
Now I’m back at the office, copying this into the box to upload it to the blog. One thing I have realized about myself is that I don’t react or respond to things the way that I think I will.
I had thought about what my reaction would be if they told me it was Cancer – I thought I would stay calm and ask intelligent questions. Instead, when she said Cancer, I felt like I had been hit in the stomach and my head started to spin.
I thought I would miss my natural boobs for the rest of my life and that I would always feel like a part of me was missing. I don’t miss them at all – these new ones are much more convenient and comfortable and sturdy. Love sturdy. I’m still getting used to them, but overall, an improvement.
I had completely prepared myself to lose my composure and freak out when I started pulling my hair out. I thought that would be the moment when I really crumbled. But I didn’t cry at all. It was interesting and affecting, but not terrible.
Today, I thought I would be ecstatic to have my final treatment and get a date for my port to come out. I was so excited. Finally the day is here. But that sudden attachment to my port surprised me. When I got to my car, I cried.
Weird.
My hair is coming back slowly - but surely. I used to have straight blond hair, and now it's dark and curly. I hope the curls stay for awhile - I'm curious to see how they turn out. Either way - I'm glad to have it back.
Life is moving ahead nicely...
Monday, April 5, 2010
Spring Has Sprung
I am six weeks past my last chemo treatment and I feel awesome. I am getting my energy back and feel more like myself again. I didn't realize how wiped out I was until I started to feel better - what a difference! I can't believe the progress my body has made. Things that used to exhaust me - like going to the grocery store or, on a bad day, stairs - are back in their normal category of normal again. I can go up and down the stairs as often as I want to. And as fast as I want to. And I can do it again and again and again! HA!!
I went in to see my oncologist on Friday and had the Herceptin drip. They ran blood work and started me on Tamoxifin, which I will be on daily for the next five years. My doc wrote me my second hand-written note (which freaked me out a bit as the only other time he did this was to explain why I was having chemo) which explained why I am on Tamoxifin. To my understanding, this drug treats my "estrogen positive" status. Normally, when estrogen is released, breast cells start making milk, then quit after the body figures out it isn't pregnant, then starts the process again the next month. My estrogen positive status means that my breast CANCER cells, rather than making milk, just make more cancer cells. So, this is bad. However, the ability to treat this with Tamoxifin is good. This is what I took away from the conversation.
It's amazing the technologies and medications that are now available to treat cancer. Obviously, there isn't a cancer cure, but so much progress has been made, and continues to be made. As my doc and I were talking about the new drug and I was asking questions about my cancer, he said that my estrogen-positive level was high - in the 70s I think he said.
"Wow," I said (not understanding why that was high or what in comparison to that would be normal). "So is that was screwed me?"
"Nope," he said. "What would have screwed you 10 years ago would be the HER-2 over-expressed issue. But now, we have drugs to treat that like Herceptin..."
Huh.
So I sat on that thought for a bit and asked the nurse about it when I was on the drip. I told her in a nutshell what the doc had said. I asked her what exactly my options would have been 10 years ago being HER-2 positive. She stopped and looked at me for a second, then crouched down next to my chair. I can't remember her exact words, I wish I could. But essentially, she said that they have made such progress in treatments that they are now more able to manage cancer than to chase it. People who used to be diagnosed and given a time frame to live are now alive for a very long time. I didn't get the impression that I would have been given a time frame, but that it would have been much more difficult to manage.
The doc also said that if this cancer ever comes back, which it shouldn't, but if it does, that they won't be able to cure it, only treat it. Ok. I'm ok with that.
Ten years ago, I was an adult. (That's one funny thing about being an adult - at some point you realize you've been one for awhile.) I was working on my undergrad thesis, I had my own apartment, I owned a car, I was in love with my boyfriend, I was old enough to vote, old enough to go to the bar, old enough to be on my own. My body was fully grown, no more adds to wait for. If I would have had this cancer ten years ago, I may have been in trouble. I am not in trouble. How lucky am I?
Random thought: What will the world look like on the day they cure cancer? Will it be like D-Day in Times Square with streamers falling from the sky and people kissing in the streets? Will there be unabashed joy in every city in the world? There should be. When will this be the standard - "Where's John today?" "Oh, he got cancer. He'll be back next week." "Cool. Tell him hi."
On a different note, I haven't shaved my head in over two weeks! I am getting hair back, although unevenly. There are a few spots that are slow movers, so I'm looking a little post-apocalyptic these days. I joke that I'm experiencing male pattern balding. I just hope to god that I don't have to resort to a comb-over at age 32. Everyone swears that it all comes back, but I'll believe it when I see it. I know my rogue chin hair came back (that little ba*@&rd), so I guess we're on the right track.
I'm also working on getting my atrophied muscles back into shape. I am doing my own version of yoga and may have finally found a workout that doesn't suck! I am calling it Rock Yoga! Yes! You heard it here! A brand new thing! It's a combination of yoga and headbanging. It works for me.
I'm all about the relaxation yoga and centering your thoughts, etc... But why would you want to center your thoughts when you can... rock out to Blink 182!? My thoughts are centered... ON AIR GUITAR YO! When the music gets too good to just stretch, then it morphs into a weird dance routine, which I like to consider the cardio portion of the set. Jumping and headbanging and general merriment. Then I get tired and go back to stretching... until the Cult starts playing and how can you not participate when Fire Woman is on?!
I'm back and work and so happy to have my head back in my job. I'm also working on school and looking forward to everything continuing on its current track. I am meeting with the geneticist regarding a few more tests in May. Then, on July 16th I get my new boobs. I am REALLY looking forward to getting these temporary hard-as-a-rock spacers switched out for the new, sleek and stylin' version.
So, all is well here. I am so glad it's spring and that my energy is coming back. I'm also REALLY happy that it isn't taking as long as they said it might, because I have stuff to do and it feels good to be doing it again.
Random thought #2: I just read through my post. I believe it's probably called aerobics. But whatever. It's ROCK YOGA in my book. And in my world, my book. :)
Carrie
I went in to see my oncologist on Friday and had the Herceptin drip. They ran blood work and started me on Tamoxifin, which I will be on daily for the next five years. My doc wrote me my second hand-written note (which freaked me out a bit as the only other time he did this was to explain why I was having chemo) which explained why I am on Tamoxifin. To my understanding, this drug treats my "estrogen positive" status. Normally, when estrogen is released, breast cells start making milk, then quit after the body figures out it isn't pregnant, then starts the process again the next month. My estrogen positive status means that my breast CANCER cells, rather than making milk, just make more cancer cells. So, this is bad. However, the ability to treat this with Tamoxifin is good. This is what I took away from the conversation.
It's amazing the technologies and medications that are now available to treat cancer. Obviously, there isn't a cancer cure, but so much progress has been made, and continues to be made. As my doc and I were talking about the new drug and I was asking questions about my cancer, he said that my estrogen-positive level was high - in the 70s I think he said.
"Wow," I said (not understanding why that was high or what in comparison to that would be normal). "So is that was screwed me?"
"Nope," he said. "What would have screwed you 10 years ago would be the HER-2 over-expressed issue. But now, we have drugs to treat that like Herceptin..."
Huh.
So I sat on that thought for a bit and asked the nurse about it when I was on the drip. I told her in a nutshell what the doc had said. I asked her what exactly my options would have been 10 years ago being HER-2 positive. She stopped and looked at me for a second, then crouched down next to my chair. I can't remember her exact words, I wish I could. But essentially, she said that they have made such progress in treatments that they are now more able to manage cancer than to chase it. People who used to be diagnosed and given a time frame to live are now alive for a very long time. I didn't get the impression that I would have been given a time frame, but that it would have been much more difficult to manage.
The doc also said that if this cancer ever comes back, which it shouldn't, but if it does, that they won't be able to cure it, only treat it. Ok. I'm ok with that.
Ten years ago, I was an adult. (That's one funny thing about being an adult - at some point you realize you've been one for awhile.) I was working on my undergrad thesis, I had my own apartment, I owned a car, I was in love with my boyfriend, I was old enough to vote, old enough to go to the bar, old enough to be on my own. My body was fully grown, no more adds to wait for. If I would have had this cancer ten years ago, I may have been in trouble. I am not in trouble. How lucky am I?
Random thought: What will the world look like on the day they cure cancer? Will it be like D-Day in Times Square with streamers falling from the sky and people kissing in the streets? Will there be unabashed joy in every city in the world? There should be. When will this be the standard - "Where's John today?" "Oh, he got cancer. He'll be back next week." "Cool. Tell him hi."
On a different note, I haven't shaved my head in over two weeks! I am getting hair back, although unevenly. There are a few spots that are slow movers, so I'm looking a little post-apocalyptic these days. I joke that I'm experiencing male pattern balding. I just hope to god that I don't have to resort to a comb-over at age 32. Everyone swears that it all comes back, but I'll believe it when I see it. I know my rogue chin hair came back (that little ba*@&rd), so I guess we're on the right track.
I'm also working on getting my atrophied muscles back into shape. I am doing my own version of yoga and may have finally found a workout that doesn't suck! I am calling it Rock Yoga! Yes! You heard it here! A brand new thing! It's a combination of yoga and headbanging. It works for me.
I'm all about the relaxation yoga and centering your thoughts, etc... But why would you want to center your thoughts when you can... rock out to Blink 182!? My thoughts are centered... ON AIR GUITAR YO! When the music gets too good to just stretch, then it morphs into a weird dance routine, which I like to consider the cardio portion of the set. Jumping and headbanging and general merriment. Then I get tired and go back to stretching... until the Cult starts playing and how can you not participate when Fire Woman is on?!
I'm back and work and so happy to have my head back in my job. I'm also working on school and looking forward to everything continuing on its current track. I am meeting with the geneticist regarding a few more tests in May. Then, on July 16th I get my new boobs. I am REALLY looking forward to getting these temporary hard-as-a-rock spacers switched out for the new, sleek and stylin' version.
So, all is well here. I am so glad it's spring and that my energy is coming back. I'm also REALLY happy that it isn't taking as long as they said it might, because I have stuff to do and it feels good to be doing it again.
Random thought #2: I just read through my post. I believe it's probably called aerobics. But whatever. It's ROCK YOGA in my book. And in my world, my book. :)
Carrie
Friday, March 12, 2010
First Herceptin-only Treatment
I am back in the chemo room this morning, however this time it's only for Herceptin. They didn't even need to do a blood draw as it won't affect my bone marrow/blood count. As strange as it sounds, I like getting the results from my blood draws so that I know where I'm at each time. I have print outs of my stats for my file from each visit. They didn't even weigh me! (This is probably for the best as I'm not sure I want to know...)
I am SO glad to be done with the chemo. I feel that my current physical state is more affected by my mental state this time around. Mentally - I know that my body will continue to get stronger rather than be "cut off at the knees" again with another treatment. I didn't realize how that change would affect my outlook on getting healthier. Now I feel like every activity I do will build on the previous one rather than be wasted energy. My brain is weeks ahead of my body, but that's ok.
After my last treatment, I drove home to Minot to veg out at mom and dad's house. It was really nice to be home while I wasn't feeling well - mom and dad cooked for me, watched TV with me, and generally took care of me for the week. They were also sick, so I'm sure we were quite a crew. But we were all in the same place and that's what mattered. I had grand plans to visit people that I hadn't seen in awhile, but I was only able to see a few. I took advantage of being home, so I stayed there and slept.
Over the past three weeks, I've been hypersensitive to the fact that I'm cancer free. I am thrilled about it, but am struggling with feelings of guilt that I need to work though. As I talk to people about this, I know it sounds ridiculous to them as they see a person with no hair, uneven turbo boobs, and little energy. I, on the other hand, feel like I got off easy with only 5 months of inconvenience and a cancer free future. I still have the Herceptin treatments, 5 years of Tamoxifen, and a few more surgeries... but I'm totally fine with that.
It hits me in weird ways. For example, on my way to Minot, I stopped at the BK in Hillsboro. As I was waiting for my food, I saw a memorial on the wall. There was a photo of a woman who worked there and a framed, typed letter next to her. She had cancer, she was young, it surprised her, she went through treatment, and she died. I left Hillsboro in tears. How is it fair that she didn't make it and I did? I don't remember what type of cancer she had or what the circumstances were. I don't even remember her name. But I won't ever forget reading that letter and the feelings I had standing there.
During the week I was in Minot, I thought alot about being "cancer free." I thought about how that didn't make sense - how could I be cured that quickly? My last blog post was wrong - it doesn't make sense. I can't be that lucky, etc. By the time I was driving home, I was pretty sure I had it wrong somehow. I stopped in Grand Forks to see my friends and started bawling. They have worked in the medical field for a long time - I asked them to explain this all to me again, which they patiently did. Now I understand that I have a blank slate and that any cancer I get in the future will not be caused by my breast cancer.
Now I have no excuse not to get in shape and stay that way. During the past few months, I swore to myself in a million different ways that I would NEVER take my body and health for granted again. I have visions of being in shape, of building muscle, of flexing my bicep and actually seeing something move. I have visions of yoga and biking and hiking and standing fierce in the face of nature. Maybe I'll even start jogging! (Just kidding, that one will probably never happen :) I hope it sticks. I'm pretty lazy when it comes to getting in shape, so we'll see how I do with this. You can paint stripes on a horse, but that doesn't make it a zebra (or whatever that saying is).
Also, I noticed that ambition doesn't obscure the cupcake on the counter. This is unfortunate.
So far, kinda ok though. I do a bit of yoga daily, not even enough to break a sweat. I'm basically stretching and moving at this point. I have a long way to go, I think. My body is tired and sore. My muscles are kinda pissed at me and everything still aches from treatments and shots. BUT, if I keep doing a little bit at a time, hopefully it will pay off. They say it takes 28 days to create a habit, and I'm 7 days in... I expect to be back to normal in about two weeks.
Just kidding. I'm giving it a month.
Ok. Probably longer. I'm going to be patient with myself and with my body and appreciate my ability to move without tipping over exhausted. Now that I know my progress will build, I'm also pushing myself a bit. I have had good energy over the past week, so have tried to channel it into getting as much done as possible. On Wednesday, I crashed and stayed home, but that's been my MO as long as I can remember: do as much as possible when I can, then re-charge for a day. Right now, I just crash more often. I'm not sure how to conserve my energy - I'm not sure how to have energy and not do anything with it in the hope that I can save it for later. So, since this is, in my mind, a temporary situation, I guess I'll use that energy when I can get it!
I am not expecting to have any side effects from today's treatment, but the nurse mentioned I may have some. We'll see I guess.
The good news is that everything here is melting - the weather has been in the 40s and sunny, with rain all this week. I can see my grass again and I am itching to rake my yard and start digging in the dirt. Walking on a treadmill for 30 minutes is work, but digging in my yard for a few hours is fun. Yay spring! (For the record, I have nothing against winter and I like the snow. But I've associated this winter with being sick and I'm ready to be healthy again. Buh-bye snow.)
I hope everyone reading this is doing well and that the sun is shining in your neck of the woods.
Carrie
I am SO glad to be done with the chemo. I feel that my current physical state is more affected by my mental state this time around. Mentally - I know that my body will continue to get stronger rather than be "cut off at the knees" again with another treatment. I didn't realize how that change would affect my outlook on getting healthier. Now I feel like every activity I do will build on the previous one rather than be wasted energy. My brain is weeks ahead of my body, but that's ok.
After my last treatment, I drove home to Minot to veg out at mom and dad's house. It was really nice to be home while I wasn't feeling well - mom and dad cooked for me, watched TV with me, and generally took care of me for the week. They were also sick, so I'm sure we were quite a crew. But we were all in the same place and that's what mattered. I had grand plans to visit people that I hadn't seen in awhile, but I was only able to see a few. I took advantage of being home, so I stayed there and slept.
Over the past three weeks, I've been hypersensitive to the fact that I'm cancer free. I am thrilled about it, but am struggling with feelings of guilt that I need to work though. As I talk to people about this, I know it sounds ridiculous to them as they see a person with no hair, uneven turbo boobs, and little energy. I, on the other hand, feel like I got off easy with only 5 months of inconvenience and a cancer free future. I still have the Herceptin treatments, 5 years of Tamoxifen, and a few more surgeries... but I'm totally fine with that.
It hits me in weird ways. For example, on my way to Minot, I stopped at the BK in Hillsboro. As I was waiting for my food, I saw a memorial on the wall. There was a photo of a woman who worked there and a framed, typed letter next to her. She had cancer, she was young, it surprised her, she went through treatment, and she died. I left Hillsboro in tears. How is it fair that she didn't make it and I did? I don't remember what type of cancer she had or what the circumstances were. I don't even remember her name. But I won't ever forget reading that letter and the feelings I had standing there.
During the week I was in Minot, I thought alot about being "cancer free." I thought about how that didn't make sense - how could I be cured that quickly? My last blog post was wrong - it doesn't make sense. I can't be that lucky, etc. By the time I was driving home, I was pretty sure I had it wrong somehow. I stopped in Grand Forks to see my friends and started bawling. They have worked in the medical field for a long time - I asked them to explain this all to me again, which they patiently did. Now I understand that I have a blank slate and that any cancer I get in the future will not be caused by my breast cancer.
Now I have no excuse not to get in shape and stay that way. During the past few months, I swore to myself in a million different ways that I would NEVER take my body and health for granted again. I have visions of being in shape, of building muscle, of flexing my bicep and actually seeing something move. I have visions of yoga and biking and hiking and standing fierce in the face of nature. Maybe I'll even start jogging! (Just kidding, that one will probably never happen :) I hope it sticks. I'm pretty lazy when it comes to getting in shape, so we'll see how I do with this. You can paint stripes on a horse, but that doesn't make it a zebra (or whatever that saying is).
Also, I noticed that ambition doesn't obscure the cupcake on the counter. This is unfortunate.
So far, kinda ok though. I do a bit of yoga daily, not even enough to break a sweat. I'm basically stretching and moving at this point. I have a long way to go, I think. My body is tired and sore. My muscles are kinda pissed at me and everything still aches from treatments and shots. BUT, if I keep doing a little bit at a time, hopefully it will pay off. They say it takes 28 days to create a habit, and I'm 7 days in... I expect to be back to normal in about two weeks.
Just kidding. I'm giving it a month.
Ok. Probably longer. I'm going to be patient with myself and with my body and appreciate my ability to move without tipping over exhausted. Now that I know my progress will build, I'm also pushing myself a bit. I have had good energy over the past week, so have tried to channel it into getting as much done as possible. On Wednesday, I crashed and stayed home, but that's been my MO as long as I can remember: do as much as possible when I can, then re-charge for a day. Right now, I just crash more often. I'm not sure how to conserve my energy - I'm not sure how to have energy and not do anything with it in the hope that I can save it for later. So, since this is, in my mind, a temporary situation, I guess I'll use that energy when I can get it!
I am not expecting to have any side effects from today's treatment, but the nurse mentioned I may have some. We'll see I guess.
The good news is that everything here is melting - the weather has been in the 40s and sunny, with rain all this week. I can see my grass again and I am itching to rake my yard and start digging in the dirt. Walking on a treadmill for 30 minutes is work, but digging in my yard for a few hours is fun. Yay spring! (For the record, I have nothing against winter and I like the snow. But I've associated this winter with being sick and I'm ready to be healthy again. Buh-bye snow.)
I hope everyone reading this is doing well and that the sun is shining in your neck of the woods.
Carrie
Friday, February 19, 2010
It's a good day in cancerland - 'cause I"M CURED!
You read that right - my doc said today that he considers me to be cured!!! I am thrilled! I want to burst into tears and jump up and down, but I'm in the chemo room right now and it seems a bit inappropriate... but I did shed a few happy tears in the waiting room...
I'm live-blogging my final chemo treatment (just kidding, only one submission. I'm not covering an Apple press conference or anything that interesting). But - it's my final chemo treatment and I am so looking forward to getting my energy and brain power back. I've been feeling like I was loosing my mind over the past weeks and my ability to focus has been pretty poor. I asked the nurses a few weeks ago about this mental issue, and they assured me that everything would come back. This implies that it's indeed being lost. At least I'm not crazy for thinking I'm crazy. Every little bit helps.
Today's news
I met with my oncologist today with a list of questions on what happens next and now have a good idea of what to expect. Here's what I found out...
I will continue to come in every three weeks through October for Herceptin, which is a drug that I am currently getting with my chemo treatments, but that isn't a chemo drug in and of itself. It is geared toward the HER2-positive marker that I am positive for. It's a great drug and has had amazing success in treatment over the past 10 years. The side effects are related to heart function, which is where the MUGA heart scans every three months come into play. The results of the last scan were great - even higher than my baseline - so I feel pretty good about that.
In six weeks, I start taking a drug called Tamoxifin, which I will take daily for five years. The side effects to this drug are basically hot flashes. I asked if they will be more intense than the ones I already have, and the doc said they should be about the same. Cool - I can handle that. I will meet with him during this appointment when he gets me started on this drug for a general "what's up."
Doc also said today that he recommends sticking with the Zoladex, which shuts down my ovaries, for a few years - which I am totally fine with. It will protect them through the Tamoxifin, and give me one thing less to worry about.
I will meet with the doctor every three months through October and have MUGA scans at the same intervals. Next year, I will meet with him every 4 months. Years three through five, I meet with him every six. We'll see what happens after that.
I need to make the appointment now with a geneticist to get tested for a gene that lets me know if my chances of ovarian cancer are higher. If so, we'll deal with that as it comes. Worst case scenario is that it's higher, and I'll get those little suckers ripped out too. But, the doc said he would be more concerned if I was triple negative (estrogen, progesterone, and HER2 negative) rather than positive, so I'm less worried about that at this point.
I asked then what it meant to be in remission and how I would know when I was cured. He said that remission doesn't apply to me as it's more geared toward cancers that are expected to act up again in the future. He said that he considers me to be cured as he doesn't expect this to show up again! There is always a chance that it could come back at some time in the future, and at that point it would not be curable, only treatable, but I had him repeat the terms again. Not remission - cured. I am very grateful and lucky - this is not lost on me. I will be grateful and lucky for the rest of my life. Truly.
I'm waiting to set my boob switch-out surgery until I have a better idea of my schedule over the next few months with work and school. I also found out about a crazy new parlor trick which involves a flash light and implants. Way funny - I told the doc about it and he hadn't heard about that one.
Past few weeks:
Sorry I haven't updated my blog for a bit - the last few weeks have been up and down. The fifth treatment seemed to be my worst by far and I know better now than to update my blog when I feel like crap. No good comes of that. I was more tired (which is saying something, because I thought I was tired before...) and my stomach was more sensitive than in the past.
I got a great burst of energy last week Monday - Wednesday and went into work and got as much done as I could. Then, after working late on Wed, I stopped at McD's on my way home and ended up in the ER at 430 in the morning with what I'm pretty sure is a combination of bad food/food poisoning and going through chemo. By the time I got to the ER, I was totally dehydrated and my muscles were cramping up. It wasn't my best showing. And can someone please tell me why I get cute doctors every time I couldn't possibly look worse? I'm not sure I made a good impression as the bald, shaking, cramping, pale girl throwing up my guts.
Also - a HUGE thanks to Kelly for crawling out of bed at 430 in the morning to bring me to the hospital and sitting through all of it with me. There is no way that I will ever be able to really thank her for all that she has done, and continues to do, for me. She's an amazing friend and I am so grateful to have her in my life. If you know her - please tell her she's awesome.
After I was released, I was on a liquid diet for a few days and slept for about 20 out of the next 24 hours. I am feeling much better today and am emotionally boosted by knowing that after the effects of this treatment - it's all uphill!
Random thought - sometimes old, sad, dog's dead and grandma's in a coma country music really is the best medicine. I spent an evening going through old country songs and bawling my eyes out and it felt great. I can compile a list of the culprits, if anyone is ever interested. The most recent recording is probably mid-90s, so beware.
Random thought 2 - I love the feeling of a freshly shaved head. It is so awesome. I'm pretty sure Kilgore's alternate line was, "I love the smell of a freshly shaved head in the morning." It fits.
Random thought 3 - A normal person would probably swear off McD's after a visit to the ER. I was on this train for about 36 hours. However, I acknowledge my strong, complex, almost familial relationship to McD's and quickly got over it. I am giving myself a break from it for awhile, but I could never turn my back on a french fry. Ever.
I'll update again when I'm feeling better after the treatment side effects. I'm planning on heading to Minot for the week to hibernate at my parent's house.
Talk to you later,
Carrie
I'm live-blogging my final chemo treatment (just kidding, only one submission. I'm not covering an Apple press conference or anything that interesting). But - it's my final chemo treatment and I am so looking forward to getting my energy and brain power back. I've been feeling like I was loosing my mind over the past weeks and my ability to focus has been pretty poor. I asked the nurses a few weeks ago about this mental issue, and they assured me that everything would come back. This implies that it's indeed being lost. At least I'm not crazy for thinking I'm crazy. Every little bit helps.
Today's news
I met with my oncologist today with a list of questions on what happens next and now have a good idea of what to expect. Here's what I found out...
I will continue to come in every three weeks through October for Herceptin, which is a drug that I am currently getting with my chemo treatments, but that isn't a chemo drug in and of itself. It is geared toward the HER2-positive marker that I am positive for. It's a great drug and has had amazing success in treatment over the past 10 years. The side effects are related to heart function, which is where the MUGA heart scans every three months come into play. The results of the last scan were great - even higher than my baseline - so I feel pretty good about that.
In six weeks, I start taking a drug called Tamoxifin, which I will take daily for five years. The side effects to this drug are basically hot flashes. I asked if they will be more intense than the ones I already have, and the doc said they should be about the same. Cool - I can handle that. I will meet with him during this appointment when he gets me started on this drug for a general "what's up."
Doc also said today that he recommends sticking with the Zoladex, which shuts down my ovaries, for a few years - which I am totally fine with. It will protect them through the Tamoxifin, and give me one thing less to worry about.
I will meet with the doctor every three months through October and have MUGA scans at the same intervals. Next year, I will meet with him every 4 months. Years three through five, I meet with him every six. We'll see what happens after that.
I need to make the appointment now with a geneticist to get tested for a gene that lets me know if my chances of ovarian cancer are higher. If so, we'll deal with that as it comes. Worst case scenario is that it's higher, and I'll get those little suckers ripped out too. But, the doc said he would be more concerned if I was triple negative (estrogen, progesterone, and HER2 negative) rather than positive, so I'm less worried about that at this point.
I asked then what it meant to be in remission and how I would know when I was cured. He said that remission doesn't apply to me as it's more geared toward cancers that are expected to act up again in the future. He said that he considers me to be cured as he doesn't expect this to show up again! There is always a chance that it could come back at some time in the future, and at that point it would not be curable, only treatable, but I had him repeat the terms again. Not remission - cured. I am very grateful and lucky - this is not lost on me. I will be grateful and lucky for the rest of my life. Truly.
I'm waiting to set my boob switch-out surgery until I have a better idea of my schedule over the next few months with work and school. I also found out about a crazy new parlor trick which involves a flash light and implants. Way funny - I told the doc about it and he hadn't heard about that one.
Past few weeks:
Sorry I haven't updated my blog for a bit - the last few weeks have been up and down. The fifth treatment seemed to be my worst by far and I know better now than to update my blog when I feel like crap. No good comes of that. I was more tired (which is saying something, because I thought I was tired before...) and my stomach was more sensitive than in the past.
I got a great burst of energy last week Monday - Wednesday and went into work and got as much done as I could. Then, after working late on Wed, I stopped at McD's on my way home and ended up in the ER at 430 in the morning with what I'm pretty sure is a combination of bad food/food poisoning and going through chemo. By the time I got to the ER, I was totally dehydrated and my muscles were cramping up. It wasn't my best showing. And can someone please tell me why I get cute doctors every time I couldn't possibly look worse? I'm not sure I made a good impression as the bald, shaking, cramping, pale girl throwing up my guts.
Also - a HUGE thanks to Kelly for crawling out of bed at 430 in the morning to bring me to the hospital and sitting through all of it with me. There is no way that I will ever be able to really thank her for all that she has done, and continues to do, for me. She's an amazing friend and I am so grateful to have her in my life. If you know her - please tell her she's awesome.
After I was released, I was on a liquid diet for a few days and slept for about 20 out of the next 24 hours. I am feeling much better today and am emotionally boosted by knowing that after the effects of this treatment - it's all uphill!
Random thought - sometimes old, sad, dog's dead and grandma's in a coma country music really is the best medicine. I spent an evening going through old country songs and bawling my eyes out and it felt great. I can compile a list of the culprits, if anyone is ever interested. The most recent recording is probably mid-90s, so beware.
Random thought 2 - I love the feeling of a freshly shaved head. It is so awesome. I'm pretty sure Kilgore's alternate line was, "I love the smell of a freshly shaved head in the morning." It fits.
Random thought 3 - A normal person would probably swear off McD's after a visit to the ER. I was on this train for about 36 hours. However, I acknowledge my strong, complex, almost familial relationship to McD's and quickly got over it. I am giving myself a break from it for awhile, but I could never turn my back on a french fry. Ever.
I'll update again when I'm feeling better after the treatment side effects. I'm planning on heading to Minot for the week to hibernate at my parent's house.
Talk to you later,
Carrie
Friday, January 29, 2010
How to clear out a waiting room and other useless info
So, Tuesday I went in for my MUGA scan, which checks out the blood flow through my heart, (I believe.) All was going well - they started an IV to inject my blood with radioactive dye as they don't use the port for this. I had this MUGA procedure done prior to my surgery to get a baseline for any changes that the Herceptin would impose. The nurse asked if I wanted to go to the busy waiting room until they called me or the secondary one with less people. So we head down to the secondary waiting room and she is asking me questions...
"How tall are you?"
"5.5"
"How much do you weigh"
"About 1... um... I think... Last time..." (And I started to remember the last time I had this shot - I sat down to read about the Kardashian's wedding plans in a magazine and shot bolt upright and ran into the nurses station because I was pretty sure I was going to be sick. They led me to the bathroom, but I was fine - the nausea passed.)
"Um... Ahh... I think I'm going to be sick..."
And sure enough, as I sat in the first chair, I threw up. The nurse knew the score - and had a garbage can ready and I was proud of my ability to manage myself. However, out of the corner of my eye, a man stood up, hesitated, and walked out. When I finally looked up through the nurses that surrounded me - the entire waiting room was totally empty.
This works, people! This seems to be an effective way to have waiting room privacy! I have unearthed one of the secrets of hospital regulars!
The nurses came back concerned as none of them had any memory of anyone throwing up from the injection - they were pulling at my clothing a bit to make sure I wasn't turning red or breaking into a bad rash, but I assured them I was fine. In fact, I was familiar. I re-connected with the stomach I have known and loved my whole life. One thing that amazes me about these chemo treatments is that I have thus far avoided throwing up. I have boat loads of anti-nausea medications that I take to prevent it and they work like a charm. My usually MO health-wise is that my stomach is the first thing to go. Hearing the nurses' concern that no one has ever thrown up from this was, in a way, comforting. Back to normal.
Tuesday and Wednesday were high energy days for me. My body is exhausted, but my mental energy is working out. This gets me in trouble as I am also just a space cadet lately. I get so distracted and feel like I can't focus on anything. The doctors and nurses call this "chemo brain" and assure me that my focus will return. It's kinda funny - I can start a story and forget the point half-way through. My friends are used to it and laugh. It's tougher when focusing on important things - but I counteract much of it by extensive list making. That helps.
A side effect of mental energy and physical tiredness is piles of stuff everywhere. I took down all my holiday decorations and put them into piles, because I try to make as few trips up and down the stairs as possible. Then, when I get to the office to clear that off Christmas stuff, I get distracted and decide to clean out that closet. Then I get wiped out from that, set that junk aside and bring the holiday stuff back out to the living room. Bring a load downstairs, grab clean laundry on the way up and decided to not only put it away, but it's about time that I clean out my closet. This gets half way done before I fill the basket with dirty laundry and start a load downstairs. Then I decide that I need to work on the office again, but on the way realize that I can't see the kitchen table. So I start that. Then take a bag of recycling to the porch and realize I can clean up recycling. Until breaking down boxes wears me out - back to the closet... All night long. Many piles, great intentions, I swear there's a method to my madness.
Thursday I had my fifth chemo treatment - only one left! I slept for the first 45 minutes under their warm blankets and my hoodie, but then met a great lady next to me and talked with her and her family for a few hours. That made the time pass quickly. I enjoy my time in the chemo room - it's a good time to relax and know that the chemicals they are giving me, no matter how toxic, are healing to my body in a way. At least that's how I look at it.
Usually I'm good until at least Saturday night with my stomach and tiredness, but today I was exhausted. I woke up late, did a little work, then fell asleep with my computer on my lap and slept through my 1pm Neulasta shot appointment. This isn't a big deal - they just give it to me when I show up. I wonder what time I would have woken up had my good friends from Grand Forks not called from outside my house. We went to the hospital, had a bit to eat afterward, and came back to my house for the weekend. I laid down to take a quick nap at about 530 and woke up at 10. It's looking like I'm a bit more tired this time around. They are cumulative I guess!
I am so excited to have my friends from GF in town - they are like my parents away from home, but Bill has dirtier jokes. Joni brought down her Kitchen Aid mixer to make all kinds of banana breads and foods and I have no doubt that we will eat and bake and watch tv to our hearts content. Joni calls her baking "Joni Love," and I have been the willing and lucky recipient for over a decade.
My final chemo is set for Friday, Feb. 19th, I believe. I am looking forward to moving forward and getting some strength and coherent thought back into my life. I can't wait for the days when I have my regular energy back and feel like I can do more than one or two things a day! I will fully admit that it all goes much smoother if I don't fight it and just roll with everything. I think that's the lesson everyone has been trying to teach me.
So, all's well in this camp for a bit. I'm in the home stretch and am finally learning to relax a bit I think.
Carrie
"How tall are you?"
"5.5"
"How much do you weigh"
"About 1... um... I think... Last time..." (And I started to remember the last time I had this shot - I sat down to read about the Kardashian's wedding plans in a magazine and shot bolt upright and ran into the nurses station because I was pretty sure I was going to be sick. They led me to the bathroom, but I was fine - the nausea passed.)
"Um... Ahh... I think I'm going to be sick..."
And sure enough, as I sat in the first chair, I threw up. The nurse knew the score - and had a garbage can ready and I was proud of my ability to manage myself. However, out of the corner of my eye, a man stood up, hesitated, and walked out. When I finally looked up through the nurses that surrounded me - the entire waiting room was totally empty.
This works, people! This seems to be an effective way to have waiting room privacy! I have unearthed one of the secrets of hospital regulars!
The nurses came back concerned as none of them had any memory of anyone throwing up from the injection - they were pulling at my clothing a bit to make sure I wasn't turning red or breaking into a bad rash, but I assured them I was fine. In fact, I was familiar. I re-connected with the stomach I have known and loved my whole life. One thing that amazes me about these chemo treatments is that I have thus far avoided throwing up. I have boat loads of anti-nausea medications that I take to prevent it and they work like a charm. My usually MO health-wise is that my stomach is the first thing to go. Hearing the nurses' concern that no one has ever thrown up from this was, in a way, comforting. Back to normal.
Tuesday and Wednesday were high energy days for me. My body is exhausted, but my mental energy is working out. This gets me in trouble as I am also just a space cadet lately. I get so distracted and feel like I can't focus on anything. The doctors and nurses call this "chemo brain" and assure me that my focus will return. It's kinda funny - I can start a story and forget the point half-way through. My friends are used to it and laugh. It's tougher when focusing on important things - but I counteract much of it by extensive list making. That helps.
A side effect of mental energy and physical tiredness is piles of stuff everywhere. I took down all my holiday decorations and put them into piles, because I try to make as few trips up and down the stairs as possible. Then, when I get to the office to clear that off Christmas stuff, I get distracted and decide to clean out that closet. Then I get wiped out from that, set that junk aside and bring the holiday stuff back out to the living room. Bring a load downstairs, grab clean laundry on the way up and decided to not only put it away, but it's about time that I clean out my closet. This gets half way done before I fill the basket with dirty laundry and start a load downstairs. Then I decide that I need to work on the office again, but on the way realize that I can't see the kitchen table. So I start that. Then take a bag of recycling to the porch and realize I can clean up recycling. Until breaking down boxes wears me out - back to the closet... All night long. Many piles, great intentions, I swear there's a method to my madness.
Thursday I had my fifth chemo treatment - only one left! I slept for the first 45 minutes under their warm blankets and my hoodie, but then met a great lady next to me and talked with her and her family for a few hours. That made the time pass quickly. I enjoy my time in the chemo room - it's a good time to relax and know that the chemicals they are giving me, no matter how toxic, are healing to my body in a way. At least that's how I look at it.
Usually I'm good until at least Saturday night with my stomach and tiredness, but today I was exhausted. I woke up late, did a little work, then fell asleep with my computer on my lap and slept through my 1pm Neulasta shot appointment. This isn't a big deal - they just give it to me when I show up. I wonder what time I would have woken up had my good friends from Grand Forks not called from outside my house. We went to the hospital, had a bit to eat afterward, and came back to my house for the weekend. I laid down to take a quick nap at about 530 and woke up at 10. It's looking like I'm a bit more tired this time around. They are cumulative I guess!
I am so excited to have my friends from GF in town - they are like my parents away from home, but Bill has dirtier jokes. Joni brought down her Kitchen Aid mixer to make all kinds of banana breads and foods and I have no doubt that we will eat and bake and watch tv to our hearts content. Joni calls her baking "Joni Love," and I have been the willing and lucky recipient for over a decade.
My final chemo is set for Friday, Feb. 19th, I believe. I am looking forward to moving forward and getting some strength and coherent thought back into my life. I can't wait for the days when I have my regular energy back and feel like I can do more than one or two things a day! I will fully admit that it all goes much smoother if I don't fight it and just roll with everything. I think that's the lesson everyone has been trying to teach me.
So, all's well in this camp for a bit. I'm in the home stretch and am finally learning to relax a bit I think.
Carrie
Monday, January 25, 2010
I turned 32 this week! According to pop culture and tv commercials, I am old. VH1 and MTV reality shows are no longer an option. I may have a shot at Lifetime or Bravo. I love commercials.
I love birthdays - mine, yours, whomever. Love 'em. When I hear birthday, I think of sugar, birthday hats, and candles. People smiling and cheering. Why doesn't everyone feel a bit younger on their birthday? You can tell yourself you feel so much older, so tell yourself you feel so much younger. Maybe you will.
I feel young this year. With everything that's happened, I am young. I am often the youngest sitting in the waiting rooms that I sit in, the youngest sitting in the chair. When I tell people about breast cancer, one of the first things they comment on is my youth. I have my whole life ahead of me. I hope I am less than half my age when I die. That's awesome. I haven't felt this young in a long time. I wonder where I'll be at this time next year...?
Last week was a mix of feeling better, then feeling exhausted. My toughest challenge is the fatigue, as they call it. It's really frustrating. I have spent some great time with friends lately and am going to try to be a bit more accepting of the fatigue and work with it rather than fight it like I do. I was out and about this weekend with friends - running errands, window shopping, etc. and I slept like a rock. And then I slept again this afternoon. And I'm going to bed early. I'm tired. Like my nose hairs, I'm looking forward to getting my energy back.
Friday, I went into the hospital for a shot to keep my ovaries shut down for a bit - hoping for a continuation of the current symptoms, rather than a nice return of the very first shot. So far so good. Then, I also went through all my side effects to date, and was very glad to learn that the bone and muscle soreness was actually a side effect. Also, I had caught a sinus infection somewhere and can take Sudafed.
The nurse also said I'm at the point where people start to realize they have cancer, if they haven't really internalized it. That's about right, I guess. I love precedent.
Tomorrow I go in for a MUGA scan, for my heart, to check on any damage that may be a side effect. I'm sure this will turn out just fine. Then, Thursday is my 5th treatment - which seems crazy! It's really gone quickly. I am so looking forward to being done.
Random thought: Dove's Body Wash is not an acceptable substitute for bubble bath. FYI.
Have a great week!
Carrie
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