I hope everyone had a wonderful holiday if you celebrate one. We had a nice, relaxing Christmas spent doing a little family stuff and a little alone stuff. We got to see cousins, aunts, grandma, siblings, sisters-in-law, brother-in-law, nieces, and nephews on Stein's side. Next week, we'll get together with some of my family, too.
The holidays always make me pause and think about the people in my life. This year, especially, I've been thinking about all the people who have been such an integral part of our lives. We are truly blessed to have the support of you all. We feel humbled by your generosity, good thoughts, and prayers that you send our way.
Along the way on this crazy-cancer adventure, there have been people who have made me stop and think how lucky I am to know such compassionate people.
I can't begin to tell you how much time and energy Stein has put in to make my life easier and more manageable throughout this ordeal. From wrapping Christmas gifts, to bringing more water to me at chemo, to scheduling and keeping appointments in the calendar on the iPad, to making dinner most nights when all I want to do is lie on the couch. He's been upbeat and caring, concerned and humorous, thoughtful and realistic. I keep saying to people, "I don't know how I'm going to repay him." He's truly taking "in sickness and in health" to heart. I'm lucky.
My sister-in-law and Chris have been rock stars on the Ann Arbor and Chicago fronts. They both have arranged meals to be delivered to us via folks from Chicago (we've had pizzas flown in - thanks, Patty! And take-out delivered - thanks, Shark and Jane!) and by folks in Ann Arbor. On the Ann Arbor front, people have been bringing us homemade meals on days when we can't possibly think about making dinner. Chris and Anne have also coordinated a cleaning person to come on the days I have chemo. It is so wonderful to come home to a clean house and not have to worry about dusting or vacuuming. What a luxury. And I can't forget to thank Anne for her bi-weekly delivery of Cheez-Its! Sometimes it's the only thing that sounds good to eat.
A great group of long-time girlfriends from Chicago have organized themselves to deliver a package to me every week before my chemo day. These boxes have been filled with useful goodies and treats that have made me laugh. Magazines, books, pens, cards, homemade kids' pictures, candies, and other useful items have been waiting for me on my doorstep. Meg, Kathryn, Jane, Patty, and Chris, you all rock.
My friend Amy keeps me supplied with movies, TV shows, and magazines to make the chemo time shorter. Every so often I find a package in school mail, or a bag hanging on my classroom door. So thoughtful.
Stein, my mom, Mickey, and Chris have sat with me at chemo. It's a pretty boring thing to sit and watch nurses change IV bags and watch me wheel a cart to the bathroom, but it's great to have the company. They've taken a lot of their own time to come and do this. I'm lucky.
So many of you have sent cards, texts, prayers, emails, books, and gifts our way. It's been great getting these surprises. Please know that these all go a long way. I stay positive because I know I'm going to be alright, I know that my prognosis is good, and I continue to hear good news from my doctor. I'm getting there (almost 1/2 done!). What has helped me keep my positive attitude has been all that you've done or said. I'm speechless.
I'm lucky. And grateful.
Thursday, December 27, 2012
Friday, December 14, 2012
Chestnuts
Yesterday morning, I sat in my classroom office (yes, I have an office in my classroom. It's a rarity, and I love it). My morning routine usually involves only turning on one small light in the classroom, and the light in my office. I don't want to be shocked in the day. I just want to ease into it.
Anyway, as I sat at my desk doing various pre-school activities, a woman came into my office. She's a T.A. at our school, and I've come to know her well. She was the T.A. two years ago in my friend Jan's classroom, and last year in my friend Allie's classroom (Hi, Allie!). Both of those years, my class teamed up to be reading buddies with the class where she was a T.A.
It's pretty unusual to see her on our wing of the school. We're kind of isolated on a fourth and fifth grade island, and she works on the second and third grade island.
She softly said, "Good morning. Do have a few minutes?" I always feel like that second sentence is loaded. I use it myself, so I know how it is to be on the other end delivering it. Sometimes it's a serious matter, oftentimes it ends up being an emotional matter.
"Sure," I said hesitantly. As I said that, she held out a fisted hand like she wanted me to open my hand to receive something. But she pulled her hand back when she started her story. "I don't know if I ever told you this story, but I've always liked Chestnut trees," she shyly explained. "Growing up, there was a Chestnut tree on the way to my school. When I would walk to school, my friends and I would always pick up the chestnuts. That tree evokes such great memories for me."
"But now," she further explained, "The neighborhood has really changed. The Chestnut tree is gone, and a lot of the houses have changed or have been torn down and rebuilt."
She went on to tell me that recently she went back to her hometown to visit her mother's and father's graves. "But before I went to the cemetery, I took a drive around the neighborhood. The house next door to the one I grew up in was having a garage sale [she LOVES garage sales] so I stopped by. As I got to talking with the people who were having the garage sale, they convinced me to go next door to see my old house."
So she did. She told me that the people were really generous and invited her into the house to look around. The house was the only one that had "Cemetery Road" as its address. She described to me the backyard and how it butted up to a cemetery. She said that she went into the backyard and walked toward the cemetery. "As I walked toward the cemetery, I felt something crunching beneath my feet. I looked down, and there were chestnuts. I looked up, and I saw that there was a chestnut tree there that hadn't been there before. I felt right at home. For one, I WAS home. For two, the chestnuts spurred so many good memories of home, my neighborhood, and my friends."
"So I think chestnuts are magical," she said while putting out her fisted hand again. "And I wanted to give this to you." I held out my hand, and she dropped a little chestnut into my palm. "I don't know if you'll think it's hokey, but I wanted to give this to you."
With tears in my eyes after giving her a big hug, I told her about the house I grew up in, and that at the end of the street there was a small park with a huge Chestnut tree. My friends and I would spend a lot of time in that park, picking up chestnuts, cutting our hands on the thorny husks, and collecting the nuts inside. A lot of memories flooded back to me. It was all bittersweet as I told her about my house and neighborhood. My brother and sister-in-law bought the house I grew up in from my parents. I was able to get back to see the house and the neighborhood on a regular basis until recently. They sold the house in August. I'm lucky that I had a more extended time than most people to see the house take shape under another family and watch the neighborhood do the same under new neighbors.
I kept the chestnut in my pocket the whole day. It was still in my pocket when I went to get blood drawn and to see my doctor. My doctor delivered some great news. The CT scan I had taken last weekend showed major shrinking of the tumors. He was really pleased.
Chestnuts. Memories. Family. Friends. Good news. Love.
Anyway, as I sat at my desk doing various pre-school activities, a woman came into my office. She's a T.A. at our school, and I've come to know her well. She was the T.A. two years ago in my friend Jan's classroom, and last year in my friend Allie's classroom (Hi, Allie!). Both of those years, my class teamed up to be reading buddies with the class where she was a T.A.
It's pretty unusual to see her on our wing of the school. We're kind of isolated on a fourth and fifth grade island, and she works on the second and third grade island.
She softly said, "Good morning. Do have a few minutes?" I always feel like that second sentence is loaded. I use it myself, so I know how it is to be on the other end delivering it. Sometimes it's a serious matter, oftentimes it ends up being an emotional matter.
"Sure," I said hesitantly. As I said that, she held out a fisted hand like she wanted me to open my hand to receive something. But she pulled her hand back when she started her story. "I don't know if I ever told you this story, but I've always liked Chestnut trees," she shyly explained. "Growing up, there was a Chestnut tree on the way to my school. When I would walk to school, my friends and I would always pick up the chestnuts. That tree evokes such great memories for me."
"But now," she further explained, "The neighborhood has really changed. The Chestnut tree is gone, and a lot of the houses have changed or have been torn down and rebuilt."
She went on to tell me that recently she went back to her hometown to visit her mother's and father's graves. "But before I went to the cemetery, I took a drive around the neighborhood. The house next door to the one I grew up in was having a garage sale [she LOVES garage sales] so I stopped by. As I got to talking with the people who were having the garage sale, they convinced me to go next door to see my old house."
So she did. She told me that the people were really generous and invited her into the house to look around. The house was the only one that had "Cemetery Road" as its address. She described to me the backyard and how it butted up to a cemetery. She said that she went into the backyard and walked toward the cemetery. "As I walked toward the cemetery, I felt something crunching beneath my feet. I looked down, and there were chestnuts. I looked up, and I saw that there was a chestnut tree there that hadn't been there before. I felt right at home. For one, I WAS home. For two, the chestnuts spurred so many good memories of home, my neighborhood, and my friends."
"So I think chestnuts are magical," she said while putting out her fisted hand again. "And I wanted to give this to you." I held out my hand, and she dropped a little chestnut into my palm. "I don't know if you'll think it's hokey, but I wanted to give this to you."
With tears in my eyes after giving her a big hug, I told her about the house I grew up in, and that at the end of the street there was a small park with a huge Chestnut tree. My friends and I would spend a lot of time in that park, picking up chestnuts, cutting our hands on the thorny husks, and collecting the nuts inside. A lot of memories flooded back to me. It was all bittersweet as I told her about my house and neighborhood. My brother and sister-in-law bought the house I grew up in from my parents. I was able to get back to see the house and the neighborhood on a regular basis until recently. They sold the house in August. I'm lucky that I had a more extended time than most people to see the house take shape under another family and watch the neighborhood do the same under new neighbors.
I kept the chestnut in my pocket the whole day. It was still in my pocket when I went to get blood drawn and to see my doctor. My doctor delivered some great news. The CT scan I had taken last weekend showed major shrinking of the tumors. He was really pleased.
Chestnuts. Memories. Family. Friends. Good news. Love.
Saturday, December 1, 2012
Chemo 9 to 5, What a Way to Make a Living
Chemo #4. 1/3 of the way done! I think about countdowns this way. I think in fractional terms (although I was never good at fractions), and then I think about how many of those fractions I still need to do. So, two more thirds, and I'll be done. I can do it, not that I really have a choice.
So back to yesterday. Well, actually, I have to go back to Thursday. I was at school, standing on a chair so I could reach some stuff on a shelf. As I was sorting through the stuff, a grey shadow came over the side of my right eye. I blinked a couple times to try to clear it, but it didn't go away. Two thoughts ran through my head: Am I going to faint? and Am I going blind? I decided it was best to get down from the chair. I sat down and realized that I wasn't going to faint. Eventually the shadow got smaller, so I also realized I wasn't going blind. What was left was a small shadow/spot of black at the top left part of my eye.
So of course I consulted Dr. Google. Everything from migraines to detached retinas came up as search results. I decided to call my oncologist. Maybe it was chemo related. After waiting a while for the call back, I called again. This time, they called back pretty quickly. The nurse from the office said, "Are you calling from work? Because the doctor thinks that you just need to go home and rest. You're working too hard." Little did she know my student teacher had his first solo week, so I wasn't working that hard. But, I heeded her advice and went home. I rested all afternoon, but still had the spot when I got up.
My sister Mickey (Hi, Mick!) came that night so she could go to chemo with Stein and me the next day. We caught up a little and then went to bed. The next morning, I woke up and the spot was still there. I was told by the nurse the day before that I should inform the clinic if it was still there the next day. I got my blood drawn as planned, then went up to the clinic and talked to the nurse. She said it was probably ok to go ahead with chemo, but she would consult one of the doctors (mine was on vacation).
I got called into chemo (same room, same nurse!) and sat down in the chair. As we were just getting settled, the nurse from the clinic came in and said they got me a STAT appointment at the Eye Center (add another building to the list!) and I was to go right over there. We got over there around 9:15 and was told that my appointment was at 10:45. So much for STAT! I wasn't called in until 11:15, and then endured a battery of eye tests, including dilation of my pupils. At the end of the 3 1/2 hours, they said they couldn't find anything abnormal, but wanted me to go to a neuro-opthamologist on Friday. Can't have a week go by without seeing a doctor, I guess.
Needless to say, we got back to the Cancer Center late. I told the nurse at the clinic that they couldn't find anything, so I could go on with the chemo, right? She had to consult the doctor again, and then came out and said my blood numbers were low, so I couldn't have the chemo. I know it sounds crazy, but I almost started crying. I didn't want to have to postpone the treatment. I didn't want to have to delay my whole schedule. I'm supposed to be done at the end of March, and by golly, I will be done at the end of March. (Remember losing that control thing? Ahem.) Anyway, the doctor came out and said my white blood cell count was the same as the last time, and the time before that. He asked how I was feeling (just like last time except for the eye issue) and said that it was okay to go ahead with the chemo.
So in to the room I went (same room, different nurse) and Mickey and I settled in. Stein brought us some lunch (Thanks, Stein) and we kept ourselves busy for the next 3 hours. We were out of there at 5:30, and home by 5:45. Mickey dropped me off at home and went to the store to buy stuff to cook for dinner (Thanks again, Mick!). I slept a little on the couch, and then moved up to bed where I had a dinner of Cheez-Its (Thanks, Anne!) and went to bed for the night. I slept pretty well, but still had the small spot in my eye when I woke up. It hasn't gotten worse, just annoying.
I told Stein and Mickey that someone is again telling me to let go and slow down. This stuff is out of my control, and I need to learn to just take it as it is and go with it. A lesson to be learned for sure. Another lesson I learned yesterday as I was getting so annoyed with the circus the day became: I'm lucky. As I've said before, this sucks that I have this and have to go through it, but it could be worse. There was a woman in the chair next to me who was in her chair before I got there, and still there when I left. She was also packing up medicines to take home because she will have to be on a pump for 48 more hours once she got home. The nurse who administered my chemo told me about a friend she was going to visit whose husband just died of lung cancer.
I need to be thankful and accept that my lesson will have ups and downs and maybe a little waiting along the way, but I'm going to be okay at the end.
So back to yesterday. Well, actually, I have to go back to Thursday. I was at school, standing on a chair so I could reach some stuff on a shelf. As I was sorting through the stuff, a grey shadow came over the side of my right eye. I blinked a couple times to try to clear it, but it didn't go away. Two thoughts ran through my head: Am I going to faint? and Am I going blind? I decided it was best to get down from the chair. I sat down and realized that I wasn't going to faint. Eventually the shadow got smaller, so I also realized I wasn't going blind. What was left was a small shadow/spot of black at the top left part of my eye.
So of course I consulted Dr. Google. Everything from migraines to detached retinas came up as search results. I decided to call my oncologist. Maybe it was chemo related. After waiting a while for the call back, I called again. This time, they called back pretty quickly. The nurse from the office said, "Are you calling from work? Because the doctor thinks that you just need to go home and rest. You're working too hard." Little did she know my student teacher had his first solo week, so I wasn't working that hard. But, I heeded her advice and went home. I rested all afternoon, but still had the spot when I got up.
My sister Mickey (Hi, Mick!) came that night so she could go to chemo with Stein and me the next day. We caught up a little and then went to bed. The next morning, I woke up and the spot was still there. I was told by the nurse the day before that I should inform the clinic if it was still there the next day. I got my blood drawn as planned, then went up to the clinic and talked to the nurse. She said it was probably ok to go ahead with chemo, but she would consult one of the doctors (mine was on vacation).
I got called into chemo (same room, same nurse!) and sat down in the chair. As we were just getting settled, the nurse from the clinic came in and said they got me a STAT appointment at the Eye Center (add another building to the list!) and I was to go right over there. We got over there around 9:15 and was told that my appointment was at 10:45. So much for STAT! I wasn't called in until 11:15, and then endured a battery of eye tests, including dilation of my pupils. At the end of the 3 1/2 hours, they said they couldn't find anything abnormal, but wanted me to go to a neuro-opthamologist on Friday. Can't have a week go by without seeing a doctor, I guess.
Needless to say, we got back to the Cancer Center late. I told the nurse at the clinic that they couldn't find anything, so I could go on with the chemo, right? She had to consult the doctor again, and then came out and said my blood numbers were low, so I couldn't have the chemo. I know it sounds crazy, but I almost started crying. I didn't want to have to postpone the treatment. I didn't want to have to delay my whole schedule. I'm supposed to be done at the end of March, and by golly, I will be done at the end of March. (Remember losing that control thing? Ahem.) Anyway, the doctor came out and said my white blood cell count was the same as the last time, and the time before that. He asked how I was feeling (just like last time except for the eye issue) and said that it was okay to go ahead with the chemo.
So in to the room I went (same room, different nurse) and Mickey and I settled in. Stein brought us some lunch (Thanks, Stein) and we kept ourselves busy for the next 3 hours. We were out of there at 5:30, and home by 5:45. Mickey dropped me off at home and went to the store to buy stuff to cook for dinner (Thanks again, Mick!). I slept a little on the couch, and then moved up to bed where I had a dinner of Cheez-Its (Thanks, Anne!) and went to bed for the night. I slept pretty well, but still had the small spot in my eye when I woke up. It hasn't gotten worse, just annoying.
I told Stein and Mickey that someone is again telling me to let go and slow down. This stuff is out of my control, and I need to learn to just take it as it is and go with it. A lesson to be learned for sure. Another lesson I learned yesterday as I was getting so annoyed with the circus the day became: I'm lucky. As I've said before, this sucks that I have this and have to go through it, but it could be worse. There was a woman in the chair next to me who was in her chair before I got there, and still there when I left. She was also packing up medicines to take home because she will have to be on a pump for 48 more hours once she got home. The nurse who administered my chemo told me about a friend she was going to visit whose husband just died of lung cancer.
I need to be thankful and accept that my lesson will have ups and downs and maybe a little waiting along the way, but I'm going to be okay at the end.
Saturday, November 24, 2012
1/4 Way Done!
I guess if you put it in fractional terms, it makes it sound a little better than 3 down, 9 to go. Next week I'll be 1/3 done, and that sounds even better. This may be a good lesson to go over with my class. We are on the fractions unit, so it fits.
Anyway, thank you for all your kind words about my father-in-law. Yesterday we had the memorial service, and it was a beautiful tribute to him. All of his kids said a few words. Very touching.
We also had my side of the family here for Thanksgiving. It was great to have everyone here. Typical of most holidays - lots of food, laughing, singing, game playing, and drinking (them, not me). I'm thankful that we had the time together to just hang out. Needless to say, between the two events, Stein and I are just lying low today.
Some good news on the cancer front - I had a doctor's appointment before my last treatment, and he said that the tumors that could be felt are shrinking. I knew that they would start shrinking, but I thought that wouldn't happen until after the 3rd or 4th treatment. It's amazing, because the tumor that led to the diagnosis can barely be felt now.
In the meantime, we're getting used to the new normal. We have our treatment day routine down, from applying the numbing cream to keeping my "chemo bag" packed with all kinds of goodies. I usually don't need half the stuff I take with me, but it's nice to have it if I do. Treatment weekends are usually pretty casual, and then the week after is back to work and life as usual.
Chris was here for my last treatment (thanks again, Chris!), and we took count of the people around me who didn't have ports (3 out of 4!). At my last doctor's appointment, I said thank you to him for giving me a port. He kind of laughed, but I really wanted to let him know that he's doing a good thing when he puts it on a patient's "to-do list". It's not the most comfortable thing to have this bump coming out of my chest, but it's better than getting poked each time I have to give blood or get a treatment.
Also at my last treatment, I was lucky to have the same nurse administer my chemo who did the last time. It's always nice to have some consistency when you feel like just another number in a chair in the huge sea of chairs. We were able to chat about what's been going on with each other and talk about upcoming plans.
In the hair department - it's still hanging on. It's very thin, and my part is parting like the red sea, but I haven't had to break out the wigs, hats, or scarves yet. I'm fine just waiting. And while we're knocking on wood, knock one more time. I know that the effects are cumulative, but overall I haven't had any bad nausea. I definitely don't feel 100%, but I know I'm lucky to not be feeling a lot of the effects. Yet.
I hope you all had a great Thanksgiving spent with family and/or friends. I'm thankful for all of you and your continued prayers and support you send our way.
Anyway, thank you for all your kind words about my father-in-law. Yesterday we had the memorial service, and it was a beautiful tribute to him. All of his kids said a few words. Very touching.
We also had my side of the family here for Thanksgiving. It was great to have everyone here. Typical of most holidays - lots of food, laughing, singing, game playing, and drinking (them, not me). I'm thankful that we had the time together to just hang out. Needless to say, between the two events, Stein and I are just lying low today.
Some good news on the cancer front - I had a doctor's appointment before my last treatment, and he said that the tumors that could be felt are shrinking. I knew that they would start shrinking, but I thought that wouldn't happen until after the 3rd or 4th treatment. It's amazing, because the tumor that led to the diagnosis can barely be felt now.
In the meantime, we're getting used to the new normal. We have our treatment day routine down, from applying the numbing cream to keeping my "chemo bag" packed with all kinds of goodies. I usually don't need half the stuff I take with me, but it's nice to have it if I do. Treatment weekends are usually pretty casual, and then the week after is back to work and life as usual.
Chris was here for my last treatment (thanks again, Chris!), and we took count of the people around me who didn't have ports (3 out of 4!). At my last doctor's appointment, I said thank you to him for giving me a port. He kind of laughed, but I really wanted to let him know that he's doing a good thing when he puts it on a patient's "to-do list". It's not the most comfortable thing to have this bump coming out of my chest, but it's better than getting poked each time I have to give blood or get a treatment.
Also at my last treatment, I was lucky to have the same nurse administer my chemo who did the last time. It's always nice to have some consistency when you feel like just another number in a chair in the huge sea of chairs. We were able to chat about what's been going on with each other and talk about upcoming plans.
In the hair department - it's still hanging on. It's very thin, and my part is parting like the red sea, but I haven't had to break out the wigs, hats, or scarves yet. I'm fine just waiting. And while we're knocking on wood, knock one more time. I know that the effects are cumulative, but overall I haven't had any bad nausea. I definitely don't feel 100%, but I know I'm lucky to not be feeling a lot of the effects. Yet.
I hope you all had a great Thanksgiving spent with family and/or friends. I'm thankful for all of you and your continued prayers and support you send our way.
Friday, November 16, 2012
Hope and Courage
I'm going to veer away from me for a moment. Don't worry, won't be long until we're back in cancer land again! (I know you love hearing about all the intricacies of my procedures.) But first I have some sad news.
My father-in-law passed away yesterday. For those of you who knew him, or knew of him, know that he has been battling Parkinson's for over ten years, and has had a lot of other ailments that stemmed from the Parkinson's. In the last few years, it was hard for him to communicate, and you could tell this was extremely frustrating for him. He was a pretty social guy before the onset of Parkinson's, so the disease took a ton of his personality away.
Even though I'm the newbie in the in-law category of the family, I have always felt welcome in the family, in large part by Jerry. It became apparent even before I met him that he played a huge role in his kid's lives. When I finally met him (which is another post in itself), I felt comfortable immediately.
I'm glad to have known him, and it is obvious by the countless people who have connections to Jerry, that they are glad too. He will definitely be missed, but the memories that we have will help us get through.
Yesterday, when Stein called me at school to tell me he died, I immediately left school to get to the house. I was driving through Chelsea and noticed what was painted on "the rock" in the park on Main Street. It said "Hope and Courage". I thought this was so fitting for Jerry, who never gave up hope for his family and friends. He was courageous in trying times, and showed us all how to live a life fully despite being dealt some terrible cards.
Hope and courage is what's getting me through my hand of bad cards right now. I like to think that Jerry's influence has shown me how to handle it with grace.
My father-in-law passed away yesterday. For those of you who knew him, or knew of him, know that he has been battling Parkinson's for over ten years, and has had a lot of other ailments that stemmed from the Parkinson's. In the last few years, it was hard for him to communicate, and you could tell this was extremely frustrating for him. He was a pretty social guy before the onset of Parkinson's, so the disease took a ton of his personality away.
Even though I'm the newbie in the in-law category of the family, I have always felt welcome in the family, in large part by Jerry. It became apparent even before I met him that he played a huge role in his kid's lives. When I finally met him (which is another post in itself), I felt comfortable immediately.
I'm glad to have known him, and it is obvious by the countless people who have connections to Jerry, that they are glad too. He will definitely be missed, but the memories that we have will help us get through.
Yesterday, when Stein called me at school to tell me he died, I immediately left school to get to the house. I was driving through Chelsea and noticed what was painted on "the rock" in the park on Main Street. It said "Hope and Courage". I thought this was so fitting for Jerry, who never gave up hope for his family and friends. He was courageous in trying times, and showed us all how to live a life fully despite being dealt some terrible cards.
Hope and courage is what's getting me through my hand of bad cards right now. I like to think that Jerry's influence has shown me how to handle it with grace.
Tuesday, November 6, 2012
Treatment #2, Characters, and What Not
Treatment #2 went a lot like treatment #1, except I didn't really have the nerves to go along with it. I knew what to expect, knew somewhat of how I would feel afterward, and knew that eventually I would feel back to "normal". It's a whole new normal, let me tell you...
On the way into the Cancer Center, it's surprising to me how many people (patients and visitors) who I see smoking. In the parking garage, which is literally 50 feet away from the entrance, people exit their cars and immediately light up. It's like a person starting a diet on Monday, I guess. Eat all the junk food you can on Sunday before the diet starts!
This time, as I got out of our car in the garage, I looked down and saw that someone who had been there before us thought it was a good idea to empty their ash tray onto the ground of the garage. Lovely. Then, as Stein and I were walking into the Cancer Center, there was an older man leaning against a pillar outside, puffing on a cigarette like it was his last before his execution.
Speaking of characters, there are always quite a few when going for treatments or other appointments. Stein and I are very entertained by other people and their quirks. (We're laughing with them, not at them, of course.) It definitely makes the time go by and sometimes it just lightens the mood. Other times it makes me thankful that my neuroses are somewhat normal.
We were waiting at the lab for my turn to go in for blood work, and another woman went in before me. I could hear some of the things going on in the lab, and at one point a tech said to another one, "We need some help down here." I knew from experience that the help needed was probably for a person who didn't have a good vein, or they tried several times with no success. (Oh, I remember those days vividly).
I didn't pay much attention to it, because it was my turn next, and I had other things on my mind. Later, Stein said that a woman came out yelling to her friend that she will never go to the male tech in the lab because he was awful. From the way Stein described where she was sitting, I remembered the woman who had been sitting there.
Fast forward to my "spa hours" of treatment. About half-way through, another patient was seated in the chair next to mine. Stein motioned to me like he had a story about her. I recognized her from the waiting room at the lab. She was the yeller! I gave Stein the "I know exactly what you're talking about" look.
We came to find out that this woman doesn't have a port, so each time she goes in for blood work and chemo she has to get an IV started. The only problem? She's deathly afraid of needles. I guess they have tried sedatives and other ways to get her to relax, but it was obvious that this was a big problem. I looked at my port and said a silent thank you to my doctor. We learned that everyone doesn't get a port from the get-go. It's up to the doctor whether he/she will send you to get one before starting treatment. Sometimes it takes the nurses in the treatment rooms to recommend a port be put in because of issues that may come up.
. . . . .
In other news, I got my haircut on Saturday. I wanted to be a bit ahead of the losing game, and not have long clumps of hair come out. I got it cut up to my chin in a bob. It looks cute, it's easy to style, and it takes a lot less shampoo to wash it. I don't know how long it will last, because today when I washed it in the shower, a lot of hair came off. It's not like I have bald spots or anything, but the drain in the bathtub was certainly more stuffed than usual.
I have a line-up of wigs waiting to be worn, and some hats too. I'm thinking about getting some scarves, and my friend Johnny recommends that I bring back the turban. We'll see. I don't know exactly what I'll end up doing on a regular basis, but I like to have options available.
Lastly, thank you. Thank you for your continued check-ins to see how we're doing. Thanks for the laughs, the funny texts, the cards that crowd our mantle, and the thoughtful gifts and packages you send our way. Thanks for the food, the prayers, and recommendations of things to try for various ailments.
We're lucky to be surrounded by such great people. Physically, emotionally, and spiritually.
On the way into the Cancer Center, it's surprising to me how many people (patients and visitors) who I see smoking. In the parking garage, which is literally 50 feet away from the entrance, people exit their cars and immediately light up. It's like a person starting a diet on Monday, I guess. Eat all the junk food you can on Sunday before the diet starts!
This time, as I got out of our car in the garage, I looked down and saw that someone who had been there before us thought it was a good idea to empty their ash tray onto the ground of the garage. Lovely. Then, as Stein and I were walking into the Cancer Center, there was an older man leaning against a pillar outside, puffing on a cigarette like it was his last before his execution.
Speaking of characters, there are always quite a few when going for treatments or other appointments. Stein and I are very entertained by other people and their quirks. (We're laughing with them, not at them, of course.) It definitely makes the time go by and sometimes it just lightens the mood. Other times it makes me thankful that my neuroses are somewhat normal.
We were waiting at the lab for my turn to go in for blood work, and another woman went in before me. I could hear some of the things going on in the lab, and at one point a tech said to another one, "We need some help down here." I knew from experience that the help needed was probably for a person who didn't have a good vein, or they tried several times with no success. (Oh, I remember those days vividly).
I didn't pay much attention to it, because it was my turn next, and I had other things on my mind. Later, Stein said that a woman came out yelling to her friend that she will never go to the male tech in the lab because he was awful. From the way Stein described where she was sitting, I remembered the woman who had been sitting there.
Fast forward to my "spa hours" of treatment. About half-way through, another patient was seated in the chair next to mine. Stein motioned to me like he had a story about her. I recognized her from the waiting room at the lab. She was the yeller! I gave Stein the "I know exactly what you're talking about" look.
We came to find out that this woman doesn't have a port, so each time she goes in for blood work and chemo she has to get an IV started. The only problem? She's deathly afraid of needles. I guess they have tried sedatives and other ways to get her to relax, but it was obvious that this was a big problem. I looked at my port and said a silent thank you to my doctor. We learned that everyone doesn't get a port from the get-go. It's up to the doctor whether he/she will send you to get one before starting treatment. Sometimes it takes the nurses in the treatment rooms to recommend a port be put in because of issues that may come up.
. . . . .
In other news, I got my haircut on Saturday. I wanted to be a bit ahead of the losing game, and not have long clumps of hair come out. I got it cut up to my chin in a bob. It looks cute, it's easy to style, and it takes a lot less shampoo to wash it. I don't know how long it will last, because today when I washed it in the shower, a lot of hair came off. It's not like I have bald spots or anything, but the drain in the bathtub was certainly more stuffed than usual.
I have a line-up of wigs waiting to be worn, and some hats too. I'm thinking about getting some scarves, and my friend Johnny recommends that I bring back the turban. We'll see. I don't know exactly what I'll end up doing on a regular basis, but I like to have options available.
Lastly, thank you. Thank you for your continued check-ins to see how we're doing. Thanks for the laughs, the funny texts, the cards that crowd our mantle, and the thoughtful gifts and packages you send our way. Thanks for the food, the prayers, and recommendations of things to try for various ailments.
We're lucky to be surrounded by such great people. Physically, emotionally, and spiritually.
Tuesday, October 30, 2012
One of the Most Frustrating Parts
You may lose your hair. Or it may just thin out.
You may feel nausea, but you shouldn't be vomiting.
You may have dry skin.
You may be constipated.
You may not be able to sleep.
You may feel worse as you receive more treatments.
You may feel REALLY tired.
You may lose weight.
You may gain weight.
You may feel depressed.
I feel like being told about the possible effects of the chemo treatments has been one long, involved TV commercial for a drug. One of the most frustrating things about having cancer and getting treated for it has been finding out that the experience and the effects are unique to the person getting treated.
Yes, I know that my prognosis is good because I've caught it relatively early, my overall health is good, and I'm young. But I would like to have a better idea about how things will be for future treatments.
I'm a planner. Most of the jobs I've had in my life have involved some pretty intricate planning. I like to know where I'm going and what I'm doing way in advance. I used to think of myself as spontaneous, but I've learned over the years that I'm the opposite. Why in the world would I choose to be a teacher? In case you didn't know, most teachers are control freaks. Every minute is planned.
So when the course of treatments and the effects have been described to me in vague terms, my mind goes crazy. How do I prepare for this? How long will the effects last? What can I do or not do or plan for in the other areas of my life?
I think someone or something is trying to teach me a lesson. It's pretty obvious that I'm uncomfortable with vagueness. I need to stop worrying, stop over analyzing, and just let it happen. Because it will happen. I also need to let others help, listen to my body, and slow down.
A lesson to be learned. Without a lesson plan. Can't I just call for a sub?
You may feel nausea, but you shouldn't be vomiting.
You may have dry skin.
You may be constipated.
You may not be able to sleep.
You may feel worse as you receive more treatments.
You may feel REALLY tired.
You may lose weight.
You may gain weight.
You may feel depressed.
I feel like being told about the possible effects of the chemo treatments has been one long, involved TV commercial for a drug. One of the most frustrating things about having cancer and getting treated for it has been finding out that the experience and the effects are unique to the person getting treated.
Yes, I know that my prognosis is good because I've caught it relatively early, my overall health is good, and I'm young. But I would like to have a better idea about how things will be for future treatments.
I'm a planner. Most of the jobs I've had in my life have involved some pretty intricate planning. I like to know where I'm going and what I'm doing way in advance. I used to think of myself as spontaneous, but I've learned over the years that I'm the opposite. Why in the world would I choose to be a teacher? In case you didn't know, most teachers are control freaks. Every minute is planned.
So when the course of treatments and the effects have been described to me in vague terms, my mind goes crazy. How do I prepare for this? How long will the effects last? What can I do or not do or plan for in the other areas of my life?
I think someone or something is trying to teach me a lesson. It's pretty obvious that I'm uncomfortable with vagueness. I need to stop worrying, stop over analyzing, and just let it happen. Because it will happen. I also need to let others help, listen to my body, and slow down.
A lesson to be learned. Without a lesson plan. Can't I just call for a sub?
Friday, October 26, 2012
Fattening up for the Slaughter
TGIF. This week felt like one of those weeks that just. wouldn't. end. I think part of it was the fact of me coming off a post-chemo weekend, and also that I had something going on every night after school. The days were filled with normal school stuff, but added to the mix was a new student starting (who doesn't speak English - thankfully I have another student who speaks Japanese), and the beginning of a new literacy rotation adding 7 more kids to my classroom.
A lot of you have been asking how the chemo went and how I felt afterward. The following is a recap - sorry, it's kinda boring... Friday I felt tired, which I know was mostly due to being done with and exhausted from the stress of chemo day one.
Saturday I felt like a rock star. I woke up and made some toast and smoothies. My mom and I went for a 45 minute walk. I read, did some schoolwork, slept, and ate like a champ. While doing all of this, I knew that Sunday could be totally different. They kept warning me that the steroid would wear off by then.
Sunday, I just felt "off". No nausea, but just not myself. I also had no appetite for anything. I managed to eat a piece of toast for breakfast, some soup for lunch, and finally Sunday night I managed to eat some dinner after eating some Cheez-its (thanks, Anne!). All the while I knew that I needed to eat, but just couldn't decide what. Stein, bless his heart, bought 5 different kinds of mac and cheese to see if one would possibly strike my fancy. None did.
Monday I woke up for school and knew that I needed to eat. Again, nothing sounded good. Stein suggested that I take one of the nausea pills (the "light" one). I managed to eat a little toast and got ready for school.
The morning was a blur, and I felt like I could crawl under my desk and fall asleep. (George Costanza had it right, by the way.) Thankfully, my student teacher jumped in and was able to teach the morning lessons. By the afternoon, I was feeling better, and ate a little more. I was also able to teach the rest of the day.
By Monday night, and the rest of the week, I was feeling back to normal. I learned, though, that I think I may need to take the Friday and Monday off when I have chemo. I think my body needs to adjust back to things, and resting and trying to eat will be easier at home than at school. I'm especially thinking about the point when they say the cumulative effects of the chemo will be worse. I hope it's not terrible, but I'm prepared to do whatever I need to do to keep strong and healthy.
Right now I feel like these in-between weeks are time to fatten up for the slaughter. I'm going to take advantage of this time while I have an appetite to eat and enjoy. I gotta make up for those missing beer and wine calories somehow. Ben and Jerry's anyone?
A lot of you have been asking how the chemo went and how I felt afterward. The following is a recap - sorry, it's kinda boring... Friday I felt tired, which I know was mostly due to being done with and exhausted from the stress of chemo day one.
Saturday I felt like a rock star. I woke up and made some toast and smoothies. My mom and I went for a 45 minute walk. I read, did some schoolwork, slept, and ate like a champ. While doing all of this, I knew that Sunday could be totally different. They kept warning me that the steroid would wear off by then.
Sunday, I just felt "off". No nausea, but just not myself. I also had no appetite for anything. I managed to eat a piece of toast for breakfast, some soup for lunch, and finally Sunday night I managed to eat some dinner after eating some Cheez-its (thanks, Anne!). All the while I knew that I needed to eat, but just couldn't decide what. Stein, bless his heart, bought 5 different kinds of mac and cheese to see if one would possibly strike my fancy. None did.
Monday I woke up for school and knew that I needed to eat. Again, nothing sounded good. Stein suggested that I take one of the nausea pills (the "light" one). I managed to eat a little toast and got ready for school.
The morning was a blur, and I felt like I could crawl under my desk and fall asleep. (George Costanza had it right, by the way.) Thankfully, my student teacher jumped in and was able to teach the morning lessons. By the afternoon, I was feeling better, and ate a little more. I was also able to teach the rest of the day.
By Monday night, and the rest of the week, I was feeling back to normal. I learned, though, that I think I may need to take the Friday and Monday off when I have chemo. I think my body needs to adjust back to things, and resting and trying to eat will be easier at home than at school. I'm especially thinking about the point when they say the cumulative effects of the chemo will be worse. I hope it's not terrible, but I'm prepared to do whatever I need to do to keep strong and healthy.
Right now I feel like these in-between weeks are time to fatten up for the slaughter. I'm going to take advantage of this time while I have an appetite to eat and enjoy. I gotta make up for those missing beer and wine calories somehow. Ben and Jerry's anyone?
Tuesday, October 23, 2012
Support from Beyond
I had my last night of parent-teacher conferences tonight. So glad that they're over. It's just one event of many that every teacher checks off the list as September, October, and November whiz by. At this point, I have report cards to write and a couple of other activities to attend to, but the bulk of my "extracurricular" fall events have passed. I'm so glad.
However, one thing I love about conferences is watching the interaction between the parents and their child. I choose to have the students at my conferences because it helps to make everyone present accountable for the goals that are set. It's interesting seeing how near the apple falls from the tree. After conferences, I can understand how the dynamics of the family work, and I have a better idea about how to navigate through this dynamic.
This time it's been interesting how parents have responded to my news. I have been close to tears at a couple conferences because of the kind words of parents. One conference that needed the student as a translator between the mom and me, ended with her saying, "I hope you feel better." Each word was spoken carefully and softly. I turned to my student teacher as they left the room, and said, "Wow. She can barely speak English, yet she felt it so important to say that to me." A little while later, a parent said, "You are in my prayers. You will be okay." Many others said the same thing. With the variety of cultures and nationalities that are represented in my classroom, I am being prayed about in a bunch of different languages to a bunch of different gods. How humbling.
However, one thing I love about conferences is watching the interaction between the parents and their child. I choose to have the students at my conferences because it helps to make everyone present accountable for the goals that are set. It's interesting seeing how near the apple falls from the tree. After conferences, I can understand how the dynamics of the family work, and I have a better idea about how to navigate through this dynamic.
This time it's been interesting how parents have responded to my news. I have been close to tears at a couple conferences because of the kind words of parents. One conference that needed the student as a translator between the mom and me, ended with her saying, "I hope you feel better." Each word was spoken carefully and softly. I turned to my student teacher as they left the room, and said, "Wow. She can barely speak English, yet she felt it so important to say that to me." A little while later, a parent said, "You are in my prayers. You will be okay." Many others said the same thing. With the variety of cultures and nationalities that are represented in my classroom, I am being prayed about in a bunch of different languages to a bunch of different gods. How humbling.
Friday, October 19, 2012
Live from the Cancer Center - It's Chemo Day One!
I intended to write this live from the Cancer Center, but I was a little distracted. Day one down, eleven to go. I'm really glad this is over and done. Now I have a better idea on how the process will typically go. The control freak in me was freaking out with all of the unknowns. What if they can't access my port? What if I get sick in the chair? What if I forget to bring something from home to keep me busy? I always tell my class that they shouldn't ask worrisome, "What if" questions. We can't be bothered by what's to come. Now I was doing just that.
Despite worrying, I did get a decent night's sleep. I woke up and put the Lidocaine on the port so I wouldn't feel it when they accessed it.
We got to the Cancer Center blood-draw lab at 7:45 this morning. (Did I tell you my mom came into town? She came in on Wednesday night, and will probably stay until Tuesday. It's good to have her here.) I gave them my card and then was called in when they called my name. I mentioned that I had a port, and the woman said, "Oh! You have a port? Well, then you need to come over here." She led me to another woman who I assume is the solo "port person" in the lab. This woman asked what type of port I had (the Power Port, of course!) because I guess different ports require different supplies. She accessed the port, no problem, and was able to draw the blood needed for my lab write up.
After that, we had an appointment with the "Skills Lab". There, we met with a nurse who gave us the run-down on what to expect today and in the future, what to do to keep my immune system protected, what I should/shouldn't eat, and what to keep in our house for possible side effects. The nurse was previously a nurse in the infusion center, so she had some great tips and advice. What a great service they provide.
Back to the Cancer Center we went, and checked in to get my infusion. When I was called, they took me back to an alcove-type room where there were 2 chairs for patients. Only one person is allowed to be with me at a time, so Stein came in with me initially, and my mom waited in the waiting room until she switched with Stein later on.
The nurse came in and explained what would be going on today. First I was given a cup of various pills all designed to help with nausea and other effects of the infusion. Then I was given the various chemo that is used for Hodgkin's. We learned something interesting today: chemo is based on your disease, and also your height and weight. There is a formula that is used, and the medicine is made in the pharmacy next to the infusion area on the day that you have the chemo.
One of the medicines (the "B" in my ABVD protocol) makes some people exhibit signs of allergy. Because of this, when it was time to give me that drug, they only gave me a small dose, and then waited an hour to see if I had any effects. I didn't, so they could proceed with the treatment. And now on subsequent visits, I won't have to wait that hour. Hooray! One less hour of my time.
At the end, she flushed the port with saline, "unplugged" the port, and sent me on my way. I got home and slept a little, then felt a little nausea. I have 2 prescriptions that will help with nausea - one that is pretty mild, and another that is the same pill I took when I had the bone marrow biopsy. Obviously, I can take the mild one during the day if I'm at school, but not the other one.
Right now I'm feeling tired, but not too bad, and (knock on wood) no nausea. I'm told that I may feel bad on Sunday when the steroids they gave me begin to wear off. We'll see... I'm also told that chemo has a cumulative effect, where the 3rd or 4th treatment may hit me a lot worse than this one.
So what did I do while I was in the chair for 4.5 hours? I read some magazines, played on the iPad, sent some texts and emails, slept, ate lunch, and people watched. My mind was pretty distracted as I was trying to take everything in, so I didn't do anything for more than about 20 minutes at a time.
I'm not looking forward to the next treatment, but I am relieved to have this first one out of the way and know what to expect now. Next time I think I'll suggest some vodka be added to the chemo cocktail. It may have just-as-good results with relaxing me. After all, alcohol played a big role at the beginning of this process, why not now?
Thank you to everyone for your prayers, words of encouragement, cards, emails, gifts, texts, and food. It makes this whole crazy ride less like Mr. Toad's Wild Ride, and more like (I cringe when I say it) It's a Small World.
Despite worrying, I did get a decent night's sleep. I woke up and put the Lidocaine on the port so I wouldn't feel it when they accessed it.
We got to the Cancer Center blood-draw lab at 7:45 this morning. (Did I tell you my mom came into town? She came in on Wednesday night, and will probably stay until Tuesday. It's good to have her here.) I gave them my card and then was called in when they called my name. I mentioned that I had a port, and the woman said, "Oh! You have a port? Well, then you need to come over here." She led me to another woman who I assume is the solo "port person" in the lab. This woman asked what type of port I had (the Power Port, of course!) because I guess different ports require different supplies. She accessed the port, no problem, and was able to draw the blood needed for my lab write up.
After that, we had an appointment with the "Skills Lab". There, we met with a nurse who gave us the run-down on what to expect today and in the future, what to do to keep my immune system protected, what I should/shouldn't eat, and what to keep in our house for possible side effects. The nurse was previously a nurse in the infusion center, so she had some great tips and advice. What a great service they provide.
Back to the Cancer Center we went, and checked in to get my infusion. When I was called, they took me back to an alcove-type room where there were 2 chairs for patients. Only one person is allowed to be with me at a time, so Stein came in with me initially, and my mom waited in the waiting room until she switched with Stein later on.
The nurse came in and explained what would be going on today. First I was given a cup of various pills all designed to help with nausea and other effects of the infusion. Then I was given the various chemo that is used for Hodgkin's. We learned something interesting today: chemo is based on your disease, and also your height and weight. There is a formula that is used, and the medicine is made in the pharmacy next to the infusion area on the day that you have the chemo.
One of the medicines (the "B" in my ABVD protocol) makes some people exhibit signs of allergy. Because of this, when it was time to give me that drug, they only gave me a small dose, and then waited an hour to see if I had any effects. I didn't, so they could proceed with the treatment. And now on subsequent visits, I won't have to wait that hour. Hooray! One less hour of my time.
At the end, she flushed the port with saline, "unplugged" the port, and sent me on my way. I got home and slept a little, then felt a little nausea. I have 2 prescriptions that will help with nausea - one that is pretty mild, and another that is the same pill I took when I had the bone marrow biopsy. Obviously, I can take the mild one during the day if I'm at school, but not the other one.
Right now I'm feeling tired, but not too bad, and (knock on wood) no nausea. I'm told that I may feel bad on Sunday when the steroids they gave me begin to wear off. We'll see... I'm also told that chemo has a cumulative effect, where the 3rd or 4th treatment may hit me a lot worse than this one.
So what did I do while I was in the chair for 4.5 hours? I read some magazines, played on the iPad, sent some texts and emails, slept, ate lunch, and people watched. My mind was pretty distracted as I was trying to take everything in, so I didn't do anything for more than about 20 minutes at a time.
I'm not looking forward to the next treatment, but I am relieved to have this first one out of the way and know what to expect now. Next time I think I'll suggest some vodka be added to the chemo cocktail. It may have just-as-good results with relaxing me. After all, alcohol played a big role at the beginning of this process, why not now?
Thank you to everyone for your prayers, words of encouragement, cards, emails, gifts, texts, and food. It makes this whole crazy ride less like Mr. Toad's Wild Ride, and more like (I cringe when I say it) It's a Small World.
Monday, October 15, 2012
Out of the Mouths of Babes
So I told my class today. I almost threw up before I was going to tell them. This was one of the hardest things I've done in any aspect of the careers I've had in my life. Speak in front of 100+ people? No sweat. Train employees and open 2 restaurants in a week? Kid's play. Organize a 4-day event with people flying in from all over the world? Piece of cake.
I had them gather on the floor in a circle so I could see all their faces. I told them that I had something to tell them about me. I said I recently found out I have Lymphoma, which is a cancer that is in the Lymphatic System. I talked about Lymph Nodes, etc. I also told them about the chemo I'll be getting and how this will cause me to be at 60-70% of my normal energy level, and I will probably lose my hair. I told them that this form of cancer is very treatable, and I'm hopeful with the outlook.
Some of the questions/comments from the class:
Why don't you just shave your head now and make a wig out of the hair you have now?
Is it contagious?
You should get a wig that looks like your hair now so no one will know.
How did you get it?
Is your hair going to grow back?
What is your energy level at now?
Your hair already looks like it's thinning. (To which I had to tell him that I haven't started the chemo yet).
So you're not going to die?
What are you going to do on "wacky hair day"?
I then sent out an email to the parents. I got a few nice replies, and also at parent/teacher conferences tonight I got a lot of nice comments.
I'm so glad that's over. Now I can breathe easier knowing I'm not keeping a secret of sorts. Now I can start planning what I'm going to do on "wacky hair day".
I had them gather on the floor in a circle so I could see all their faces. I told them that I had something to tell them about me. I said I recently found out I have Lymphoma, which is a cancer that is in the Lymphatic System. I talked about Lymph Nodes, etc. I also told them about the chemo I'll be getting and how this will cause me to be at 60-70% of my normal energy level, and I will probably lose my hair. I told them that this form of cancer is very treatable, and I'm hopeful with the outlook.
Some of the questions/comments from the class:
Why don't you just shave your head now and make a wig out of the hair you have now?
Is it contagious?
You should get a wig that looks like your hair now so no one will know.
How did you get it?
Is your hair going to grow back?
What is your energy level at now?
Your hair already looks like it's thinning. (To which I had to tell him that I haven't started the chemo yet).
So you're not going to die?
What are you going to do on "wacky hair day"?
I then sent out an email to the parents. I got a few nice replies, and also at parent/teacher conferences tonight I got a lot of nice comments.
I'm so glad that's over. Now I can breathe easier knowing I'm not keeping a secret of sorts. Now I can start planning what I'm going to do on "wacky hair day".
Sunday, October 14, 2012
How it All Began
First of all, thank you to all of you who have contacted me in various ways about what's going on. I will try to write back to you, but please be patient. The amount of calls, texts, and emails is humbling and a bit overwhelming. I'm feeling the love, that's for sure!
A lot of you have been asking me how I found out I had Hodgkin's. I'll try to explain it here...
Over a year ago, whenever I would drink alcohol, I would get a pain that started in my shoulder and would radiate down my arm. Of course I consulted Dr. Google, and a lot of the posts that I read were from people who said, "Oh yeah, I had that, and then later I was diagnosed with Lymphoma." I freaked out and went to my doctor, telling her about my "research". She asked if I had any other symptoms (fever, fatigue, night sweats, etc.). I didn't have any symptoms (and still don't), but she had me get a chest x-ray and consulted with an oncologist colleague of hers. The x-ray came back clear, and the colleague said that the pain in my arm wasn't a symptom. I felt comfortable with the results and went on with things.
Over the past year, the pain would be there when I drank alcohol, but the pain and duration would depend on what type of alcohol I drank, and also if I ate before or during drinking. Sometimes I wouldn't have any pain at all.
About a month and 1/2 ago, I was out with friends and the pain came back. This time, however, the pain was localized to my chest. I felt where the pain was, and noticed a bump on my chest. I went to the doctor who ordered an MRI. The MRI showed possible Lymphoma, so I went in for a biopsy. That confirmed the Lymphoma, and also confirmed that it was Hodgkin's.
I'm glad that the tumor in my chest grew outward instead of inward. We were able to catch it early, and without the other symptoms, I would never know that I had it. Catching it early and not having symptoms makes the prognosis even better. I'm thankful for that.
The bottom line? Bottoms up! It may save your life!
A lot of you have been asking me how I found out I had Hodgkin's. I'll try to explain it here...
Over a year ago, whenever I would drink alcohol, I would get a pain that started in my shoulder and would radiate down my arm. Of course I consulted Dr. Google, and a lot of the posts that I read were from people who said, "Oh yeah, I had that, and then later I was diagnosed with Lymphoma." I freaked out and went to my doctor, telling her about my "research". She asked if I had any other symptoms (fever, fatigue, night sweats, etc.). I didn't have any symptoms (and still don't), but she had me get a chest x-ray and consulted with an oncologist colleague of hers. The x-ray came back clear, and the colleague said that the pain in my arm wasn't a symptom. I felt comfortable with the results and went on with things.
Over the past year, the pain would be there when I drank alcohol, but the pain and duration would depend on what type of alcohol I drank, and also if I ate before or during drinking. Sometimes I wouldn't have any pain at all.
About a month and 1/2 ago, I was out with friends and the pain came back. This time, however, the pain was localized to my chest. I felt where the pain was, and noticed a bump on my chest. I went to the doctor who ordered an MRI. The MRI showed possible Lymphoma, so I went in for a biopsy. That confirmed the Lymphoma, and also confirmed that it was Hodgkin's.
I'm glad that the tumor in my chest grew outward instead of inward. We were able to catch it early, and without the other symptoms, I would never know that I had it. Catching it early and not having symptoms makes the prognosis even better. I'm thankful for that.
The bottom line? Bottoms up! It may save your life!
Thursday, October 11, 2012
Accentuate the Positive
Heard some good news today when we met with the doctor. The results of the CT and PET scans showed that the cancer is not lower than my chest, which puts it at Stage II. Because of that, I will only have to go through 12 treatments of chemo instead of the possible 16. Whew! So that knocks 2 months off of what could have been.
I also had my port inserted today. Again down to B1 we went, and I was thinking that it would be in the same place I had my biopsy. I had 2 great nurses help me when I had the biopsy, and I was hoping that I would see them again. Sure enough - I did! They recognized me and doted on me a little. It helped me relax. The IV went in fine (after I drank lots of water last night and psyched myself up this morning), and the procedure went fine, too.
It's a weird thing - that port. It's completely under my skin and has 3 little "bumps" on it that can be located under the skin. Right in the middle of the bumps is where they will aim the injection when they administer the chemo. They also can draw blood from this port. So no pokes for this girl for at least 6 months!
This weekend Chris comes in. I'm looking forward to a "last hurrah" of sorts. Just hanging out and having fun.
I also had my port inserted today. Again down to B1 we went, and I was thinking that it would be in the same place I had my biopsy. I had 2 great nurses help me when I had the biopsy, and I was hoping that I would see them again. Sure enough - I did! They recognized me and doted on me a little. It helped me relax. The IV went in fine (after I drank lots of water last night and psyched myself up this morning), and the procedure went fine, too.
It's a weird thing - that port. It's completely under my skin and has 3 little "bumps" on it that can be located under the skin. Right in the middle of the bumps is where they will aim the injection when they administer the chemo. They also can draw blood from this port. So no pokes for this girl for at least 6 months!
This weekend Chris comes in. I'm looking forward to a "last hurrah" of sorts. Just hanging out and having fun.
Wednesday, October 10, 2012
Testing, Testing
Today I had a series of tests that will help the doctor know what type of and length of treatment he will prescribe. My first test (CT scan) was at 7:30 a.m., but they wanted me there an hour before! By the time my second test (PET scan) was nearly over, I realized that if I was at school, I would've just started teaching. They were able to get me in early to the PET scan, and then we were able to get in early to the pulmonary test. We tried getting in early for the echo-cardiogram, but they were booked. So home we went, to catch up on things and eat something.
Some things I learned today:
1. Contrast liquid, no matter what "flavor" it is, tastes like crap. I had to drink 2 bottles of it before my CT scan. And then another one before the PET scan. When I first started drinking it, I almost started crying because I didn't think I could do it. But I ended up distracting myself while I drank it which seemed to work. Let's just say that because I couldn't eat this morning, and then had that crap in my belly, I was glad there was a bathroom nearby. (TMI - sorry)
2. My faith in the customer service at the hospital has been restored. Every tech or nurse whom I met today was so nice. From the tech who helped me find out where/when my next appointment was in case I needed to keep the IV in (more about that later), to the woman at pulmonary who got me in early, to the tech at cardio who apologized that they couldn't get me in earlier. That's all it takes, people. Just be nice. My fifth graders could give them some lessons.
3. Einstein Bros. Bagels at the hospital rocks! I have to admit, I went in there with my ops hat on, and was ready to do an inspection. The place looked great, and it was well staffed. Hard to believe that people were up in arms when that went in. I guess because it replaced Wendy's, but I'd much rather have an everything bagel with a shmear than a double with cheese. The frosty is debatable, though.
4. The iPad is a godsend. (Thank you Stein!) They have wireless access at the hospital, so we can surf to our heart's desire. It will definitely come in handy when I start chemo and have to be there for 4-5 hours at a time. What a great distraction.
5. I may become a troll by the time this testing stuff is done. Most of the tests were done in B1 in the hospital. Yes, the basement. I'm sure this has to do with the machines and what they emit, etc., but no sunlight. Thankfully, I won't have to be tested too often.
6. Stein is a rockstar. Not that I just learned that today. Since the initial diagnosis, he has been... coordinator of calendars, head chef in the house, making sure I'm comfortable, calling friends and family to keep them updated, my number one cheerleader. Reason #7,241 why I married that man. He was definitely listening at our wedding when the phrase "in sickness and in health" was said.
7. If you ever work in a blood-draw lab, keep your mouth shut when you're attempting to put a needle in. Every time I go to have blood drawn or if they need to start an IV, the tech spends 5 minutes flicking my arm and hand in various areas to locate a vein. Then he/she goes through a series of explanations, apologies, and narrations that are completely unnecessary and frankly freak me out. I can't bear to look at the needle going in, why do you think I would like to hear about it? This morning's attempt consisted of many "I'm so sorry's" and "I'm normally good at this" and "We'll have to abort this one and try again". (I do have another arm, you know.)
Tomorrow, we're back for more fun when they insert my port. Back down to B1, of course. That's in the morning, and then we have an appointment with the doctor when I think he'll prescribe my treatment. I'll be sure to keep y'all posted.
In the meantime, thank you so much for all the support you continue to provide us. It keeps our chins up.
Some things I learned today:
1. Contrast liquid, no matter what "flavor" it is, tastes like crap. I had to drink 2 bottles of it before my CT scan. And then another one before the PET scan. When I first started drinking it, I almost started crying because I didn't think I could do it. But I ended up distracting myself while I drank it which seemed to work. Let's just say that because I couldn't eat this morning, and then had that crap in my belly, I was glad there was a bathroom nearby. (TMI - sorry)
2. My faith in the customer service at the hospital has been restored. Every tech or nurse whom I met today was so nice. From the tech who helped me find out where/when my next appointment was in case I needed to keep the IV in (more about that later), to the woman at pulmonary who got me in early, to the tech at cardio who apologized that they couldn't get me in earlier. That's all it takes, people. Just be nice. My fifth graders could give them some lessons.
3. Einstein Bros. Bagels at the hospital rocks! I have to admit, I went in there with my ops hat on, and was ready to do an inspection. The place looked great, and it was well staffed. Hard to believe that people were up in arms when that went in. I guess because it replaced Wendy's, but I'd much rather have an everything bagel with a shmear than a double with cheese. The frosty is debatable, though.
4. The iPad is a godsend. (Thank you Stein!) They have wireless access at the hospital, so we can surf to our heart's desire. It will definitely come in handy when I start chemo and have to be there for 4-5 hours at a time. What a great distraction.
5. I may become a troll by the time this testing stuff is done. Most of the tests were done in B1 in the hospital. Yes, the basement. I'm sure this has to do with the machines and what they emit, etc., but no sunlight. Thankfully, I won't have to be tested too often.
6. Stein is a rockstar. Not that I just learned that today. Since the initial diagnosis, he has been... coordinator of calendars, head chef in the house, making sure I'm comfortable, calling friends and family to keep them updated, my number one cheerleader. Reason #7,241 why I married that man. He was definitely listening at our wedding when the phrase "in sickness and in health" was said.
7. If you ever work in a blood-draw lab, keep your mouth shut when you're attempting to put a needle in. Every time I go to have blood drawn or if they need to start an IV, the tech spends 5 minutes flicking my arm and hand in various areas to locate a vein. Then he/she goes through a series of explanations, apologies, and narrations that are completely unnecessary and frankly freak me out. I can't bear to look at the needle going in, why do you think I would like to hear about it? This morning's attempt consisted of many "I'm so sorry's" and "I'm normally good at this" and "We'll have to abort this one and try again". (I do have another arm, you know.)
Tomorrow, we're back for more fun when they insert my port. Back down to B1, of course. That's in the morning, and then we have an appointment with the doctor when I think he'll prescribe my treatment. I'll be sure to keep y'all posted.
In the meantime, thank you so much for all the support you continue to provide us. It keeps our chins up.
Friday, October 5, 2012
This Morning
This morning, as part of a battery of tests I need to get before starting chemo, I had a bone marrow biopsy. I cringed when they told me that I needed to have it done. Everyone I've known who had one talked about excruciating pain. Then they said the 5 magic words:
You will be under sedation.
Well, I wouldn't call it sedation. About 2 days ago, the nurse called and said they don't do IV sedation for the biopsy. She would be calling in a prescription for pills to put me to sleep. "I'm prescribing 1-2 pills," she said. "So how many should I take?" "Well," she explained, "I would take 2 but you won't know how you react. It's up to you." Immediately visions of Weekend at Bernie's appeared in my head. Would Stein have to carry me fireman style through the halls of the hospital?
Needless to say, I didn't sleep last night. What if the pills make me sick? What if they don't make me sleep? What if I feel the pain? And on and on. I tried all of my tricks to try to get to sleep. Nothing worked.
This morning, the rule-follower that I am took the 2 tiny pills exactly at 8:00. When we sat down in the waiting room, I said to Stein, "I don't feel anything." Yet when they called me to come into the room, I thought when did I drink 4 beers on an empty stomach this morning? I didn't feel sick, I just felt woozy.
I never did fall asleep, but had an "It's all okay" kind of feeling throughout the procedure. It lasted about 10 minutes, and there were a few pokes and stings, and a lot of pressure. All in all not a bad deal.
I had a taste for toast, so Stein and I stopped at Zingermann's for some bread, and went home to eat breakfast. I pushed the plate next to me on the couch, and took a 2-hour nap.
Right now we're getting ready to go visit friends in Indy and then tailgate at the Purdue/U of M game tomorrow. I'm looking forward to it. Distractions are good.
Up next week? Wednesday and Thursday will be full of tests - EKG, lung test, PET scan, CAT scan, insertion of the port for chemo, etc. Have all my calls forwarded to the U of M Cancer Center. By the way, why is every other building on that campus sporting a name of a donor who gave money to build it? I guess I get it.
You will be under sedation.
Well, I wouldn't call it sedation. About 2 days ago, the nurse called and said they don't do IV sedation for the biopsy. She would be calling in a prescription for pills to put me to sleep. "I'm prescribing 1-2 pills," she said. "So how many should I take?" "Well," she explained, "I would take 2 but you won't know how you react. It's up to you." Immediately visions of Weekend at Bernie's appeared in my head. Would Stein have to carry me fireman style through the halls of the hospital?
Needless to say, I didn't sleep last night. What if the pills make me sick? What if they don't make me sleep? What if I feel the pain? And on and on. I tried all of my tricks to try to get to sleep. Nothing worked.
This morning, the rule-follower that I am took the 2 tiny pills exactly at 8:00. When we sat down in the waiting room, I said to Stein, "I don't feel anything." Yet when they called me to come into the room, I thought when did I drink 4 beers on an empty stomach this morning? I didn't feel sick, I just felt woozy.
I never did fall asleep, but had an "It's all okay" kind of feeling throughout the procedure. It lasted about 10 minutes, and there were a few pokes and stings, and a lot of pressure. All in all not a bad deal.
I had a taste for toast, so Stein and I stopped at Zingermann's for some bread, and went home to eat breakfast. I pushed the plate next to me on the couch, and took a 2-hour nap.
Right now we're getting ready to go visit friends in Indy and then tailgate at the Purdue/U of M game tomorrow. I'm looking forward to it. Distractions are good.
Up next week? Wednesday and Thursday will be full of tests - EKG, lung test, PET scan, CAT scan, insertion of the port for chemo, etc. Have all my calls forwarded to the U of M Cancer Center. By the way, why is every other building on that campus sporting a name of a donor who gave money to build it? I guess I get it.
Thursday, October 4, 2012
Thank you.
Wow. What a long, strange trip it's been. And it's only been about 2 weeks. But during those 2 weeks? Well, a whole lot of crap has been thrown our way. Worse than catching that crap has been having to inform our loved ones that this is going on. Believe me, the emotions of it all will always be the hard part for me. I know I haven't physically gone through the worst of it yet, but emotionally it's already begun.
I told Stein that at the beginning of this that we need to find the humor in it all. Everything from being bewildered that the diagnosis came from a receptionist who could give us no other information other than "an oncologist will contact you" to a woman at guest "services" at the hospital who was more consumed with her time-off schedule rather than help us find where we needed to go, to the multiple conflicting messages left on three different phone options (yes, we still have a land line) to schedule us for various procedures. Through that all, we have had time to laugh and continue to laugh. We need to. It could be so much worse. Honestly. I've said this to all of you - while it sucks, there's a light at the end of the tunnel.
So, thank you. Thank you for all your thoughts, prayers, texts, phone calls, gifts, and emails. We're humbled by your care and support.
I told Stein that at the beginning of this that we need to find the humor in it all. Everything from being bewildered that the diagnosis came from a receptionist who could give us no other information other than "an oncologist will contact you" to a woman at guest "services" at the hospital who was more consumed with her time-off schedule rather than help us find where we needed to go, to the multiple conflicting messages left on three different phone options (yes, we still have a land line) to schedule us for various procedures. Through that all, we have had time to laugh and continue to laugh. We need to. It could be so much worse. Honestly. I've said this to all of you - while it sucks, there's a light at the end of the tunnel.
So, thank you. Thank you for all your thoughts, prayers, texts, phone calls, gifts, and emails. We're humbled by your care and support.
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