I consider myself a pretty observant person. I am always “casing” a place. I really love to look at décor and people watch. I have noticed that the oncology center’s exam and chemotherapy rooms are themed. They, of course, call them things like “Exam Room Two.” The first time I went to see the oncologist we were in what I refer to as the “Armstrong” Room. The room had two different large prints of Lance Armstrong, the poster child for Cancer Survivor. Wouldn’t it be just a tad more pleasant if they said “please proceed to the Armstrong Room”?
My second visit there I was placed in the whale room. I wasn’t sure to feel self-conscious about my weight, or feel that whales are peaceful determined creatures with a strong support system. Yeah, I think I’m going with that second concept.
We arrived this morning prior to 10 AM, but they were extremely busy because of the holiday. Chemo regimens have to be done in a certain timeframe, and if their office is closed on Friday, most of those folks get bumped to Thursday. I had three back-to-back appointments. The first appointment was for routine pre-chemo blood work. They always check your weight, white blood counts, temperature, and blood pressure before administering your drugs.
Afterwards I met with the oncologist. This meeting was in the farm room. The picture had a beautiful barn, with a mama sheep, baby sheep, and a horse. I felt sort of bad for the horse. He was there alone, surrounded by all the sheep! Maybe the cancer metaphor is that sometime cancer patients feel alone and that they don’t belong anywhere. Maybe this theory is the Ativan drip they gave me talking.
My regular oncologist is on vacation so I met with his partner and his physician assistant. They are feeling very positive that the treatments are working considering they can’t feel any evidence of the tumor. I asked how many courses – and they are predicting six chemotherapy sessions (meaning four left) with maybe some additional biotherapy only. I’m hopeful it’s only six! He said we’d probably re-do the PET scan after Chemo #3 or #4.
For the chemotherapy, I again got my own private space with a bed since my chemo takes so long. Today I was in the boat room. Two lovely prints of boats were displayed on the wall. Robbie noted that one of the boats in the harbor was called the Blue Devil. We chuckled, only because one of the drugs I receive is nicknamed the Red Devil and we wondered if there was another bad-ass drug called the Blue Devil.
Today it was really…routine. I knew what to expect this time and that definitely took a little of the edge off. The nurse assigned to me this time was the same as the first session. She is a GREAT STICKER because she always hits the vein the first time. I really like this about her. She was also able to speed up the drip a bit today so it took a little less time. I also received two less drips. They didn’t do the Benadryl which was given last time because my head became itchy. I experienced no itchiness this time. They also eliminated an IV steroid (I still have to take five days of prednisone). I’m theorizing that this was eliminated for three reasons: 1) It is for anti-nausea and it’s not a primary issue for me 2) I complained that insomnia was one of my key side effects, and 3) my pulse rate was high this morning from the prednisone and I think they didn’t want to make it any higher.
I did ask my usually plethora of bizarre questions. Can I eat blue cheese? Is soft serve ice cream off limits? (Mom, the nurse said it was fine). What was the deal with the margarita that caused nausea?
Robbie and I ate peanut butter and jelly sandwiches and played scrabble on the iPad for a good portion of the day. Now we’re home relaxing. Robbie is predicting I’ll be asleep by 8, but I have big plans to stay up until 9:30. I should try to rest though, because I really want to stay up for New Years Eve!
Hope you have a VERY HAPPY NEW YEAR!!!
Thursday, December 30, 2010
Wednesday, December 29, 2010
Riding the Wave
I unexpectedly had my first moment of nausea. Given that I was in my third week after chemotherapy, I figured that would be the least likely time for me to have a new side effect (other than hair loss).
I was out to dinner with my Mom and the hubbie on Monday night. As the waitress was reading off the specials she listed that they had $4 margaritas. I have been so very good, and have had very little to drink so I thought I would splurge and have a margarita. After all, chemo is just around the corner, and I know I will be drinking mainly water and juice for days.
The margarita arrives at the table and it’s huge. I know I won’t drink the whole thing, but I figured I would enjoy what I could of it. I take one drink, and it tastes wickedly sour. I know this is typical for a margarita, but the sour seemed REALLY sour. So I move the straw to the top of the drink, hoping that the ice cubes have maybe diluted the sour mix a bit and I take a big drink. The taste still isn’t agreeable. Within seconds a wave of nausea hits me like a brick wall.
We are sitting in a booth, and I ask Robbie to let me out. It wasn’t really a request, but more of a “LET ME OUT.” My Mom offers to go with me, but I tell her no, I’m fine, I just need to go to the bathroom.
The bathroom of course is in the back of the restaurant, and I am really feeling nauseous the entire walk. I am just hoping that I make it and don’t ruin everyone’s dinner. I finally make it there, and I go into a stall. I stand over the toilet and I’m certain that I’m going to throw-up. But after about a minute, it just passes. Completely. It’s as if I was never nauseous at all.
I washed my hands, regained composure, and returned to the table. Both Robbie and my Mom are completely freaked out. I told them I was fine, and started eating my salad. Robbie made me take one of my anti-nausea pills, even though at that point I felt perfectly fine. I hadn’t taken any of them up until that point because I just haven’t needed them.
I finished my meal, and have not felt nauseous since that moment. A margarita no longer sounds good to me at all though. I do worry that some other random food or drink will set me off. I just hope it’s not something I love – like chocolate or cheddar cheese!
Swift change of topic: Let’s talk about the hair. It’s hideous right now. It was falling out pretty heavily yesterday, so Robbie used the clippers and cut it down to an inch. I look like one of those birds that molts all of its feathers that just looks terribly pitiful. I was trying to be all “I am a badass cancer patient, and I don’t care if I look like a scary version of GI Jane, I’m going out in public!” But two minutes in the car and I stuck a hat on and haven’t taken it off. This adjustment might take a little more time than I anticipated.
I was out to dinner with my Mom and the hubbie on Monday night. As the waitress was reading off the specials she listed that they had $4 margaritas. I have been so very good, and have had very little to drink so I thought I would splurge and have a margarita. After all, chemo is just around the corner, and I know I will be drinking mainly water and juice for days.
The margarita arrives at the table and it’s huge. I know I won’t drink the whole thing, but I figured I would enjoy what I could of it. I take one drink, and it tastes wickedly sour. I know this is typical for a margarita, but the sour seemed REALLY sour. So I move the straw to the top of the drink, hoping that the ice cubes have maybe diluted the sour mix a bit and I take a big drink. The taste still isn’t agreeable. Within seconds a wave of nausea hits me like a brick wall.
We are sitting in a booth, and I ask Robbie to let me out. It wasn’t really a request, but more of a “LET ME OUT.” My Mom offers to go with me, but I tell her no, I’m fine, I just need to go to the bathroom.
The bathroom of course is in the back of the restaurant, and I am really feeling nauseous the entire walk. I am just hoping that I make it and don’t ruin everyone’s dinner. I finally make it there, and I go into a stall. I stand over the toilet and I’m certain that I’m going to throw-up. But after about a minute, it just passes. Completely. It’s as if I was never nauseous at all.
I washed my hands, regained composure, and returned to the table. Both Robbie and my Mom are completely freaked out. I told them I was fine, and started eating my salad. Robbie made me take one of my anti-nausea pills, even though at that point I felt perfectly fine. I hadn’t taken any of them up until that point because I just haven’t needed them.
I finished my meal, and have not felt nauseous since that moment. A margarita no longer sounds good to me at all though. I do worry that some other random food or drink will set me off. I just hope it’s not something I love – like chocolate or cheddar cheese!
Swift change of topic: Let’s talk about the hair. It’s hideous right now. It was falling out pretty heavily yesterday, so Robbie used the clippers and cut it down to an inch. I look like one of those birds that molts all of its feathers that just looks terribly pitiful. I was trying to be all “I am a badass cancer patient, and I don’t care if I look like a scary version of GI Jane, I’m going out in public!” But two minutes in the car and I stuck a hat on and haven’t taken it off. This adjustment might take a little more time than I anticipated.
Monday, December 27, 2010
Big Hairy Deal
It has begun.
Each day I give my hair a good tug. I don't want this hair-loss episode sneaking up on me. I want to know when it happens - makes me feel like I have a little control of the situation. I am starting to lightly shed. When I give a tug, I now get a few hairs. A shampoo yields even more.
Dramatized cancer always shows the hair coming out in big chunks. It never shows that for days prior to the chunks you just shed. Robbie and I both agree that when it gets to "chunk" time that we'll shave my head. I probably have a few days until that happens. So the jury is still out about whether I will start the year looking like Baby New Year!
I am bizarrely excited about this whole hair loss thing. To me, this says that the chemotherapy is doing all that it is supposed to be doing. If I didn't start to lose my hair I would worry that it wasn't killing the cancer cells either.
Thursday is my next round of chemotherapy. I am a little anxious. I have felt back to my normal self over the last few days. I will miss feeling normal. I am not looking forward to the steroids and the crash that follows. I also dread the loss of taste, though that may be a good thing after the holiday indulgences. I have also read that chemotherapy can be accumulative so some side effects may get worse. Or I may have additional side effects I didn't have the first time.
The discomfort is the price I have to pay to kick this. And the the price for long-term quality is often higher than you initially want to pay. But 20 years from now it will seem like a bargain.
- Posted using BlogPress from my iPad
Each day I give my hair a good tug. I don't want this hair-loss episode sneaking up on me. I want to know when it happens - makes me feel like I have a little control of the situation. I am starting to lightly shed. When I give a tug, I now get a few hairs. A shampoo yields even more.
Dramatized cancer always shows the hair coming out in big chunks. It never shows that for days prior to the chunks you just shed. Robbie and I both agree that when it gets to "chunk" time that we'll shave my head. I probably have a few days until that happens. So the jury is still out about whether I will start the year looking like Baby New Year!
I am bizarrely excited about this whole hair loss thing. To me, this says that the chemotherapy is doing all that it is supposed to be doing. If I didn't start to lose my hair I would worry that it wasn't killing the cancer cells either.
Thursday is my next round of chemotherapy. I am a little anxious. I have felt back to my normal self over the last few days. I will miss feeling normal. I am not looking forward to the steroids and the crash that follows. I also dread the loss of taste, though that may be a good thing after the holiday indulgences. I have also read that chemotherapy can be accumulative so some side effects may get worse. Or I may have additional side effects I didn't have the first time.
The discomfort is the price I have to pay to kick this. And the the price for long-term quality is often higher than you initially want to pay. But 20 years from now it will seem like a bargain.
- Posted using BlogPress from my iPad
Thursday, December 23, 2010
Knowledge is Power
When diagnosed with an illness the obvious thing to do is to hit the information super-highway (internet) to gather as much information as possible. Everything I have read in cancer paraphernalia as well as on the Internet says that you need to become an "expert" on your disease. With the definition of expert being well-versed enough to understand the vocabulary including potential treatment regimens and related procedures.
And for the most part the Internet is a great resource. But here are just a couple of the negatives:
1. Information can be out-dated or irrelevant. For example, the Internet says I can't have cut flowers or a Christmas tree. My oncology nurse said that this is old information, and only relevant to certain types of cancers.
2. The Internet can scare you worse than creepy clowns. My whole bone marrow freak-out wouldn't have happened if the many horror stories I was able to find had not described every excruciating detail. Additionally, when doing research with limited information, you can very easily jump to wrong conclusions. For example, before I knew what type of lymphoma I had, I would look up the prognosis of the various forms and play the "how much anxiety CAN we create for no reason?" game.
3. One person's experience is not necessarily going to be the same for another person. There are ALOT of worse case scenarios online. Often the people having the routine/ideal experience aren't taking the time to write about it.
In recent days I am finding the online cancer community to be a great source of information and moral support. One particular site I frequent is http://www.blogforacure.com.
This site provides a blogging forum for cancer survivors. What is cool is that I can specifically go to posts written by people with the exact same form of cancer that are receiving the same type of chemotherapy.
Case-in-point: Lately, I have been having some minor insomnia issues. Through this forum, I was able to reach out to others on my same chemotherapy regimen. Many experience this, and for some of the people it is temporary. Also, many of them offered recommendations.
I was also able to read on various blogs that the two-week mark is the most likely time for me to start losing my hair. Though this varies from person-to-person. My two week mark is Christmas Eve. That should make things interesting!
A few people have chronicled each of their chemotherapy treatments, including what side effects increased as well as what ones diminished over the entire course of the treatment. This information is critical to someone like me who is only one treatment in with many to go.
On another note - tomorrow brings my weekly blood work. Hoping for normal. Off to try to sleep now...
- Posted using BlogPress from my iPad
And for the most part the Internet is a great resource. But here are just a couple of the negatives:
1. Information can be out-dated or irrelevant. For example, the Internet says I can't have cut flowers or a Christmas tree. My oncology nurse said that this is old information, and only relevant to certain types of cancers.
2. The Internet can scare you worse than creepy clowns. My whole bone marrow freak-out wouldn't have happened if the many horror stories I was able to find had not described every excruciating detail. Additionally, when doing research with limited information, you can very easily jump to wrong conclusions. For example, before I knew what type of lymphoma I had, I would look up the prognosis of the various forms and play the "how much anxiety CAN we create for no reason?" game.
3. One person's experience is not necessarily going to be the same for another person. There are ALOT of worse case scenarios online. Often the people having the routine/ideal experience aren't taking the time to write about it.
In recent days I am finding the online cancer community to be a great source of information and moral support. One particular site I frequent is http://www.blogforacure.com.
This site provides a blogging forum for cancer survivors. What is cool is that I can specifically go to posts written by people with the exact same form of cancer that are receiving the same type of chemotherapy.
Case-in-point: Lately, I have been having some minor insomnia issues. Through this forum, I was able to reach out to others on my same chemotherapy regimen. Many experience this, and for some of the people it is temporary. Also, many of them offered recommendations.
I was also able to read on various blogs that the two-week mark is the most likely time for me to start losing my hair. Though this varies from person-to-person. My two week mark is Christmas Eve. That should make things interesting!
A few people have chronicled each of their chemotherapy treatments, including what side effects increased as well as what ones diminished over the entire course of the treatment. This information is critical to someone like me who is only one treatment in with many to go.
On another note - tomorrow brings my weekly blood work. Hoping for normal. Off to try to sleep now...
- Posted using BlogPress from my iPad
Tuesday, December 21, 2010
These Boots are Made for Walking
Physically the symptoms are minimal right now, and so I’ve turned my attention to a little mental rest and relaxation. I’ve put the blackberry down. I’ve unplugged the work laptop. And for a few days, I’m just letting it go. I’m focused on enjoying the holidays with my family. Any cancer patient will tell you that the mental battle is equally important as the physical one.
I started yesterday with a little retail therapy. I’ve been looking off and on for a pair of boots since about November. Because I’ve been tired, it seemed to be the store I would never have time to fit into my day. Do I go to the drug store, or do I look for fabulous boots? Yesterday, I went to the shoe store first. I have big feet – Size 11. So it’s not always easy to find something I love in my size. And I was nearly done at Rack Room and was feeling the familiar pain of not finding a pair in my size. As I went down the last boot aisle, I moved a pair of display boots to see what size the box behind the display boots were. And sure enough, they were my size. I am so in love with these boots that I may never take them off of my feet.
My Mom also arrived yesterday. I am very glad to have her here. I know it was good for her to see me and to see that I look the same as I always did, and that I’m just as obnoxious as always. I think she expected to find me looking weak and frail, and that just isn’t the case right now. I even still have my hair for now! She will also get to see my treatment center later this week when I go in for blood work. It really is a lovely place, and I think she’ll feel a little comforted to put a positive image to the place in which I receive care.
Today we are going house hunting. This should be a really fun day. I am hopeful that we’ll find a house that will be perfect for her. We are meeting a realtor shortly, and we are going to look until the sun goes down and we can’t see anymore! And if we don’t find one today, we’ll keep on looking.
My apologies that my “Cancer Blog” is a little mundane right now. Makes for a happy cancer patient, but does not make for exciting reading!
I started yesterday with a little retail therapy. I’ve been looking off and on for a pair of boots since about November. Because I’ve been tired, it seemed to be the store I would never have time to fit into my day. Do I go to the drug store, or do I look for fabulous boots? Yesterday, I went to the shoe store first. I have big feet – Size 11. So it’s not always easy to find something I love in my size. And I was nearly done at Rack Room and was feeling the familiar pain of not finding a pair in my size. As I went down the last boot aisle, I moved a pair of display boots to see what size the box behind the display boots were. And sure enough, they were my size. I am so in love with these boots that I may never take them off of my feet.
My Mom also arrived yesterday. I am very glad to have her here. I know it was good for her to see me and to see that I look the same as I always did, and that I’m just as obnoxious as always. I think she expected to find me looking weak and frail, and that just isn’t the case right now. I even still have my hair for now! She will also get to see my treatment center later this week when I go in for blood work. It really is a lovely place, and I think she’ll feel a little comforted to put a positive image to the place in which I receive care.
Today we are going house hunting. This should be a really fun day. I am hopeful that we’ll find a house that will be perfect for her. We are meeting a realtor shortly, and we are going to look until the sun goes down and we can’t see anymore! And if we don’t find one today, we’ll keep on looking.
My apologies that my “Cancer Blog” is a little mundane right now. Makes for a happy cancer patient, but does not make for exciting reading!
Saturday, December 18, 2010
All I Want for Christmas
I am happy to report that cancer is pretty low-key right now. Besides a little fatigue and waiting for my hair to fall out, there isn’t much going on. And I am very grateful of this. I am hoping that things stay this way through the Christmas holiday so I’ll go into the new year and Round 2 of chemotherapy strong and ready to battle.
In the spirit of the holiday, I’m going to focus this narrative on what I want for Christmas this year.
1. My Mom’s cooking. She is headed this way in a day or two as long as the weather holds out. My taste buds are a bit better now, and I can’t wait to have turkey and all the fixings. My mouth waters just thinking about it. It is the little things like having someone cook for you that make the difference when you aren’t your best.
2. I have already received this gift, but it’s one of those gifts that keep on giving. Every day I put my hands on the front of my neck and I feel the place where the tumor was. It was large – about 6 cm by 7 cm. My neck feels nearly normal, and it’s miraculous. When you are going through something like this, you just hope that everything is working. But it’s nice to have a physical sign that good things are happening and that progress is being made.
3. I have never much been into massages. I am high-strung and have a hard time thinking that I might enjoy it. But the back of my neck is about as tense as a stretched rubber band. I think I’m going to have to find a place to get a really good neck massage.
4. I want Robbie to have some rest and relaxation over the holidays. He has been amazing. He takes such good care of me. But no one is taking care of him. He runs the errands, pays the bills, and cleans the house. And when I’m feeling a bit sorry for myself, he finds a way to make me laugh and get me back into the right state-of-mind. The miracle of modern medicine may be half of what cures me, but his love and support will be the other half. So finding ways for him to rejuvenate will be my priority.
5. A house. Before all this cancer talk started we had decided that my Mom was going to move here to be closer to us. While she is here over the holidays, we will be house hunting for the perfect little house for her to live in. It’s a buyer’s market right now, so I am hopeful that we will be able to find her not just a house, but someplace that feels like home.
So, to recap, I want my cancer cured, a house, good food, and happiness for those I love. I suppose it comes from being an only child that I feel audacious enough to ask for so much this year. I don’t care. I’m going to ask for it all anyways. I believe that a big part of being a cancer survivor is believing that you can be cured, feeling that your worth it, and not being afraid to make plans for the future.
I hope that you and yours have a wonderful weekend filled with merriment, love, and laughter.
In the spirit of the holiday, I’m going to focus this narrative on what I want for Christmas this year.
1. My Mom’s cooking. She is headed this way in a day or two as long as the weather holds out. My taste buds are a bit better now, and I can’t wait to have turkey and all the fixings. My mouth waters just thinking about it. It is the little things like having someone cook for you that make the difference when you aren’t your best.
2. I have already received this gift, but it’s one of those gifts that keep on giving. Every day I put my hands on the front of my neck and I feel the place where the tumor was. It was large – about 6 cm by 7 cm. My neck feels nearly normal, and it’s miraculous. When you are going through something like this, you just hope that everything is working. But it’s nice to have a physical sign that good things are happening and that progress is being made.
3. I have never much been into massages. I am high-strung and have a hard time thinking that I might enjoy it. But the back of my neck is about as tense as a stretched rubber band. I think I’m going to have to find a place to get a really good neck massage.
4. I want Robbie to have some rest and relaxation over the holidays. He has been amazing. He takes such good care of me. But no one is taking care of him. He runs the errands, pays the bills, and cleans the house. And when I’m feeling a bit sorry for myself, he finds a way to make me laugh and get me back into the right state-of-mind. The miracle of modern medicine may be half of what cures me, but his love and support will be the other half. So finding ways for him to rejuvenate will be my priority.
5. A house. Before all this cancer talk started we had decided that my Mom was going to move here to be closer to us. While she is here over the holidays, we will be house hunting for the perfect little house for her to live in. It’s a buyer’s market right now, so I am hopeful that we will be able to find her not just a house, but someplace that feels like home.
So, to recap, I want my cancer cured, a house, good food, and happiness for those I love. I suppose it comes from being an only child that I feel audacious enough to ask for so much this year. I don’t care. I’m going to ask for it all anyways. I believe that a big part of being a cancer survivor is believing that you can be cured, feeling that your worth it, and not being afraid to make plans for the future.
I hope that you and yours have a wonderful weekend filled with merriment, love, and laughter.
Thursday, December 16, 2010
Sparkly!
Last weekend was my office holiday party. In normal years, Robbie and I usually get a hotel room in Charlotte and make a weekend getaway out of it. We spend the day shopping, drinking wine, and enjoying the “big city” festivities of the holiday season. This year, for obvious reasons, we skipped the party. Last weekend was also Robbie’s holiday party. Considering that was the evening of my first chemotherapy session we skipped it as well.
Additionally, we cancelled our wine club party that we were going to hold this weekend. Though I probably feel well enough to do it, it’s not the greatest idea to have a house full of people during the cold and flu season when my immune system is compromised.
So, I think it goes without saying that this girl deserved a night out. Tonight was the Hickory Wine Shoppe Annual Champagne Tasting. I was determined to attend. It’s not really a dress-up event, but it may be the only holiday event I attend this year so I pulled out the sparkly! I even took a nap this afternoon to prepare for the big event. I am allowed to drink alcohol during chemotherapy (I specifically asked), but I really didn’t drink much. I took a sip of each glass of champagne and then handed my glass to Robbie to finish it up. It was more about being out of the house and feeling a part of the holiday season. It was fun to laugh and enjoy the evening.
I’m doing a little better today after yesterday’s energy crash. I am still experiencing some aches and pains, primarily pain in my sternum associated with the white blood cell booster. I also occasionally have a headache and some muscle pain – similar to the achiness you experience with the flu. It’s not constant, and seems to be less when I’m well rested. Hey, maybe I should stay well-rested!
I also went to have my blood count checked today. This will happen weekly throughout my treatment. I was within the right level, though I did have a slight fever (99.7). I always have to watch for fever – if at any point it goes higher than 100.5 I have to call the Doctor’s office right away.
I’m off to shop now. I have about a week until I lose my hair, and baby, its cold outside! I need to get some headgear stat!
Additionally, we cancelled our wine club party that we were going to hold this weekend. Though I probably feel well enough to do it, it’s not the greatest idea to have a house full of people during the cold and flu season when my immune system is compromised.
So, I think it goes without saying that this girl deserved a night out. Tonight was the Hickory Wine Shoppe Annual Champagne Tasting. I was determined to attend. It’s not really a dress-up event, but it may be the only holiday event I attend this year so I pulled out the sparkly! I even took a nap this afternoon to prepare for the big event. I am allowed to drink alcohol during chemotherapy (I specifically asked), but I really didn’t drink much. I took a sip of each glass of champagne and then handed my glass to Robbie to finish it up. It was more about being out of the house and feeling a part of the holiday season. It was fun to laugh and enjoy the evening.
I’m doing a little better today after yesterday’s energy crash. I am still experiencing some aches and pains, primarily pain in my sternum associated with the white blood cell booster. I also occasionally have a headache and some muscle pain – similar to the achiness you experience with the flu. It’s not constant, and seems to be less when I’m well rested. Hey, maybe I should stay well-rested!
I also went to have my blood count checked today. This will happen weekly throughout my treatment. I was within the right level, though I did have a slight fever (99.7). I always have to watch for fever – if at any point it goes higher than 100.5 I have to call the Doctor’s office right away.
I’m off to shop now. I have about a week until I lose my hair, and baby, its cold outside! I need to get some headgear stat!
Wednesday, December 15, 2010
R.E.S.P.E.C.T.
I crashed today.
I felt it coming throughout the morning. I stopped at Starbucks for a large coffee, trying to fill the energy void that has been provided by the prednisone over the last week. The coffee tasted weak, and did not do what I had hoped it would.
I had a good morning at work, but with each hour I felt more tired and less focused. I stayed until about 1 PM and then headed home for the afternoon. For lunch, I had reheated some leftovers at work and they left a sour taste in my mouth that I was desperate to get rid of on the drive home. Chemotherapy really messes with your taste buds. Nothing tastes quite like it should. I drove through McDonalds specifically for a Hi-C Orange. I know, not exactly healthy – but I thought the sweetness would cut the sour taste in my mouth. The drink tasted watered-down and nothing like it should, but it did help to cut the taste.
By the time I got home I felt achy and exhausted. So tired, that my legs felt almost rubbery. I cursed myself. Just the day before, I had told Robbie that I thought maybe they shorted me some chemo. I take it back. Seriously, I was kidding. I will never again mock the chemo. I have learned my lesson.
I put some PJs on and climbed in bed for a nap. I napped hard for two hours. When I woke up, I was still achy, but I at least felt human again. This evening I have made a deliberate effort to rest, and to not disrespect the chemo. I’m feeling a little better now. And Robbie found a snack I can taste – sea salt and vinegar chips!
Tomorrow I’m resting. I need to keep my eye on the prize – which is to kick this. I do have to go get blood work done (they do a weekly check of my white blood count), but otherwise I’m staying home in my pajamas.
This is the difficult part of this journey. The lack of control is hard to deal with at times. I’m on the boat, but I’m not the navigator. I can only make the best of the ride.
I felt it coming throughout the morning. I stopped at Starbucks for a large coffee, trying to fill the energy void that has been provided by the prednisone over the last week. The coffee tasted weak, and did not do what I had hoped it would.
I had a good morning at work, but with each hour I felt more tired and less focused. I stayed until about 1 PM and then headed home for the afternoon. For lunch, I had reheated some leftovers at work and they left a sour taste in my mouth that I was desperate to get rid of on the drive home. Chemotherapy really messes with your taste buds. Nothing tastes quite like it should. I drove through McDonalds specifically for a Hi-C Orange. I know, not exactly healthy – but I thought the sweetness would cut the sour taste in my mouth. The drink tasted watered-down and nothing like it should, but it did help to cut the taste.
By the time I got home I felt achy and exhausted. So tired, that my legs felt almost rubbery. I cursed myself. Just the day before, I had told Robbie that I thought maybe they shorted me some chemo. I take it back. Seriously, I was kidding. I will never again mock the chemo. I have learned my lesson.
I put some PJs on and climbed in bed for a nap. I napped hard for two hours. When I woke up, I was still achy, but I at least felt human again. This evening I have made a deliberate effort to rest, and to not disrespect the chemo. I’m feeling a little better now. And Robbie found a snack I can taste – sea salt and vinegar chips!
Tomorrow I’m resting. I need to keep my eye on the prize – which is to kick this. I do have to go get blood work done (they do a weekly check of my white blood count), but otherwise I’m staying home in my pajamas.
This is the difficult part of this journey. The lack of control is hard to deal with at times. I’m on the boat, but I’m not the navigator. I can only make the best of the ride.
Tuesday, December 14, 2010
Deck the Halls
I woke up this morning determined to go to work. I opened my eyes, took a deep breath, and sat up. Every ounce of my being hoped that I would not experience the bone pain associated with the white blood cell booster and that I would be good to go for a day out. When I sat up, I felt good! And I was as happy as Ebenezer on Christmas morning.
As I drove in this morning, I was thrilled to be in my routine. I pulled into the parking garage behind my boss and he seemed surprised to see me. We rode the elevator up, and it was so nice to just have small talk about work. Next I headed to my office to get settled. And what to my wondering eyes did appear, but a Christmas scene full of holiday cheer! My workspace was completely decked out with a Christmas Tree, ornaments hanging from the ceiling, and garland draped from the windows and shelves. It was colorful and made me think of Whoville! It was even more pleasant because our decorating at home has been minimal thus far. We’ve pulled a few things out, but it just hasn’t been a priority. Not for lack of spirit – cause we’ve got that coming out our ears! But the logistics of getting it done seems to have eluded us this year.
It was nice to talk to folks around the office, and it was kind of weird to hear so many people say “I’ve been keeping up with your blog!” It was great to have so many folks stop by and I’m glad that people aren’t acting awkward and feel comfortable asking questions. That may change when I’m bald and become a poster child for cancer, but for now it seems I can have a little “normal”.
I actually did some productive work for a bit, and then went out to lunch with my co-workers. We had fantastic Mexican food and it was nice to chill out and relax. I showed them photos of my Pet Scan and they are probably all home this evening talking about the weird girl in their office who wouldn’t shut up about her cancer!
I left work a little early at Robbie’s urging. He is the voice in my head that says “Take it easy, remember, your job is to fight cancer right now.” Today was great for my mental health though, and I’m thrilled that I went to work.
So many people say to me “You’re such a trooper! You’re so strong!” I have to dispute that a bit. I would say that a more accurate description would be that I’m one of the lucky few that fall into a group that can handle chemotherapy very well. And I currently have steroids. Today was my last dose of those though, and who knows, by tomorrow I might have to resort to actually being a trooper.
Shout out to Terri, Leslie and others for decking the halls. The decorations totally made my day. Shout out to Varj . for picking up the tab for my Mexican feast today. Shout out to Melissa and Janis for putting up with my cancer jokes on our call today. Oh heck, shout out to all ya’ll for reading this and keeping me in your thoughts. Maybe you’re the reason I’m getting through this so well.
As I drove in this morning, I was thrilled to be in my routine. I pulled into the parking garage behind my boss and he seemed surprised to see me. We rode the elevator up, and it was so nice to just have small talk about work. Next I headed to my office to get settled. And what to my wondering eyes did appear, but a Christmas scene full of holiday cheer! My workspace was completely decked out with a Christmas Tree, ornaments hanging from the ceiling, and garland draped from the windows and shelves. It was colorful and made me think of Whoville! It was even more pleasant because our decorating at home has been minimal thus far. We’ve pulled a few things out, but it just hasn’t been a priority. Not for lack of spirit – cause we’ve got that coming out our ears! But the logistics of getting it done seems to have eluded us this year.
It was nice to talk to folks around the office, and it was kind of weird to hear so many people say “I’ve been keeping up with your blog!” It was great to have so many folks stop by and I’m glad that people aren’t acting awkward and feel comfortable asking questions. That may change when I’m bald and become a poster child for cancer, but for now it seems I can have a little “normal”.
I actually did some productive work for a bit, and then went out to lunch with my co-workers. We had fantastic Mexican food and it was nice to chill out and relax. I showed them photos of my Pet Scan and they are probably all home this evening talking about the weird girl in their office who wouldn’t shut up about her cancer!
I left work a little early at Robbie’s urging. He is the voice in my head that says “Take it easy, remember, your job is to fight cancer right now.” Today was great for my mental health though, and I’m thrilled that I went to work.
So many people say to me “You’re such a trooper! You’re so strong!” I have to dispute that a bit. I would say that a more accurate description would be that I’m one of the lucky few that fall into a group that can handle chemotherapy very well. And I currently have steroids. Today was my last dose of those though, and who knows, by tomorrow I might have to resort to actually being a trooper.
Shout out to Terri, Leslie and others for decking the halls. The decorations totally made my day. Shout out to Varj . for picking up the tab for my Mexican feast today. Shout out to Melissa and Janis for putting up with my cancer jokes on our call today. Oh heck, shout out to all ya’ll for reading this and keeping me in your thoughts. Maybe you’re the reason I’m getting through this so well.
Monday, December 13, 2010
Cookie!
Every day I expect to wake up in agony. And every day I wake up feeling just a notch below normal. So much so, that if I didn’t know what I was supposedly going through, I could be convinced that it was all some sort of elaborate joke. Don’t get me wrong. I have tons of little signs of things being just a little bit off. But it just doesn’t seem to add up to enough discomfort for me to feel “ill”.
For example, I always feel like I just drank coffee that was too hot. My mouth feels just a little scratchy all the time. But considering I’m a coffee junkie, this feeling is not unusual and so it doesn’t seem like a big deal.
Also, although my energy level is good all day, I do tend to be exhausted by 8 or 9 and am oh so ready to sleep. I also have my “witching hour” each night. I usually wake up around 1-2 AM and feel like I might be on the verge of wicked heartburn. But then I drink a big cup of water and lay back down. Because of the steroids though, I can’t ever get right back to sleep. So I watch a movie or play on the iPad for a bit.
For the last two days, I’ve had insane hunger. I know it’s the steroids and for some reason they have kicked into overdrive. If it’s salty and edible, I covet it. Except because of the steroids I am trying NOT to eat a ton of salty stuff. I want hoagies and tacos and french fries! I am really trying to eat “cancer fighting foods” and fill myself with vegetables, antioxidents, and fruit juice. Something else sort of weird - my jaw gets tired if I chew for too long. This is sort of good thing, because it might be the one thing that keeps me from robbing a convenience store in search of more food. Hey, is that a Christmas Cookie you’re eating? Come back here! Also, food isn’t quite right. The taste is just slightly wrong, which leaves you wanting more. But no matter how much more you have, it’s not what you crave.
Lastly, my focus totally sucks. I had big plans to do a bunch of work from home today. But even though I had the laptop in front of me, my ability to do real work was difficult. I think mentally I am still processing everything. I think my mind knows that I’ve been dealt a blow and that I might need more time to absorb the reality of the situation. I really do have a positive outlook, but I have to realize that it is ok to take a moment and let myself rest both physically and mentally. This is hard for me.
I also think the concept of “long haul” is weighing heavy on me right now. This isn’t going to be over next week. Or next month. Winter has just begun, and this ordeal will last the duration and then some. I am grateful that my path has been relatively easy. But I know that each round will be more difficult and that I need to be strong for a long time.
If I wake up feeling ok tomorrow, I think I’m going to go to work. I have felt a bit sequestered, and it would be very nice to be around other people. I think the beagles might need a break from my angst!
For example, I always feel like I just drank coffee that was too hot. My mouth feels just a little scratchy all the time. But considering I’m a coffee junkie, this feeling is not unusual and so it doesn’t seem like a big deal.
Also, although my energy level is good all day, I do tend to be exhausted by 8 or 9 and am oh so ready to sleep. I also have my “witching hour” each night. I usually wake up around 1-2 AM and feel like I might be on the verge of wicked heartburn. But then I drink a big cup of water and lay back down. Because of the steroids though, I can’t ever get right back to sleep. So I watch a movie or play on the iPad for a bit.
For the last two days, I’ve had insane hunger. I know it’s the steroids and for some reason they have kicked into overdrive. If it’s salty and edible, I covet it. Except because of the steroids I am trying NOT to eat a ton of salty stuff. I want hoagies and tacos and french fries! I am really trying to eat “cancer fighting foods” and fill myself with vegetables, antioxidents, and fruit juice. Something else sort of weird - my jaw gets tired if I chew for too long. This is sort of good thing, because it might be the one thing that keeps me from robbing a convenience store in search of more food. Hey, is that a Christmas Cookie you’re eating? Come back here! Also, food isn’t quite right. The taste is just slightly wrong, which leaves you wanting more. But no matter how much more you have, it’s not what you crave.
Lastly, my focus totally sucks. I had big plans to do a bunch of work from home today. But even though I had the laptop in front of me, my ability to do real work was difficult. I think mentally I am still processing everything. I think my mind knows that I’ve been dealt a blow and that I might need more time to absorb the reality of the situation. I really do have a positive outlook, but I have to realize that it is ok to take a moment and let myself rest both physically and mentally. This is hard for me.
I also think the concept of “long haul” is weighing heavy on me right now. This isn’t going to be over next week. Or next month. Winter has just begun, and this ordeal will last the duration and then some. I am grateful that my path has been relatively easy. But I know that each round will be more difficult and that I need to be strong for a long time.
If I wake up feeling ok tomorrow, I think I’m going to go to work. I have felt a bit sequestered, and it would be very nice to be around other people. I think the beagles might need a break from my angst!
Sunday, December 12, 2010
The Boring Side of Cancer
Every day I get just the slightest hint that I might have poison racing through my veins. But it’s still just a passing thought and not physically overwhelming. It usually happens in the middle-of-the-night as various drugs are winding down. Each morning, I take my prescribed medications and feel right as rain again. I’m still on enough drugs that mask side-effects that I can pretend it’s not happening. Over the next couple of days though, my drug therapy changes a bit and I expect I’ll be a little less casual about it all.
I took my last dose of the mega-anti-nausea pill today – Emend. I received it intravenously while receiving chemotherapy, and was given one mega dose to take for yesterday and today. Additionally, my prednisone ends on Tuesday. A lot of people have issues tolerating the steroids. For me, they are like energy in a pill. On them I’m like the energizer bunny. I will miss them. From my research, this upcoming week may be a time when I’m going to feel particularly tired and run-down.
So while I still have the luxury of these two amazing drugs, I’m braving the mall today to go to a wig store! I’m thinking red! But we shall see. Robbie needs to get new contact lenses anyways, so we’ll knock a couple of things out at once. I have heard anything from ten days to four weeks with regard to when I’m going to lose my hair. It’s the middle of winter, so I need to be prepared!
Tomorrow I have to go to the oncology center to get a shot of Neulasta. This is a white cell booster that helps protect me against complications of a low white blood cell count. This will decrease my chance of infection. I have read horror stories about the side effects of Neulasta. Because white blood cells are produced in your bone marrow, many people experience “mild-to-moderate bone pain” from all the extra activity. I have read blogs from patients who spend a day writhing from the pain. Other people tolerate it just fine. If my blog becomes riddled with profanity and whining, you know which one I am! I did read several discussions that Claritin (the OTC allergy medication) can alleviate the pain. You know I went out yesterday and stocked up.
In other news, I am almost certain the tumor in my neck is shrinking. This is not unusual with my type of lymphoma. In fact, if things go as planned, a majority of the treatment I go through will be to prevent recurrences. The cancer itself gets kicked pretty quickly.
That’s about it for today. This is proof that even cancer has boring days. And I’m ok with that. A shout out and huge thank you to Frank (one of my bosses) for the lovely yellow and pink roses that are brightening my house on an incredibly dreary morning. I think I had previously posted that I couldn’t have cut flowers – it’s ok, checked with the nurse and she said go for it!
I took my last dose of the mega-anti-nausea pill today – Emend. I received it intravenously while receiving chemotherapy, and was given one mega dose to take for yesterday and today. Additionally, my prednisone ends on Tuesday. A lot of people have issues tolerating the steroids. For me, they are like energy in a pill. On them I’m like the energizer bunny. I will miss them. From my research, this upcoming week may be a time when I’m going to feel particularly tired and run-down.
So while I still have the luxury of these two amazing drugs, I’m braving the mall today to go to a wig store! I’m thinking red! But we shall see. Robbie needs to get new contact lenses anyways, so we’ll knock a couple of things out at once. I have heard anything from ten days to four weeks with regard to when I’m going to lose my hair. It’s the middle of winter, so I need to be prepared!
Tomorrow I have to go to the oncology center to get a shot of Neulasta. This is a white cell booster that helps protect me against complications of a low white blood cell count. This will decrease my chance of infection. I have read horror stories about the side effects of Neulasta. Because white blood cells are produced in your bone marrow, many people experience “mild-to-moderate bone pain” from all the extra activity. I have read blogs from patients who spend a day writhing from the pain. Other people tolerate it just fine. If my blog becomes riddled with profanity and whining, you know which one I am! I did read several discussions that Claritin (the OTC allergy medication) can alleviate the pain. You know I went out yesterday and stocked up.
In other news, I am almost certain the tumor in my neck is shrinking. This is not unusual with my type of lymphoma. In fact, if things go as planned, a majority of the treatment I go through will be to prevent recurrences. The cancer itself gets kicked pretty quickly.
That’s about it for today. This is proof that even cancer has boring days. And I’m ok with that. A shout out and huge thank you to Frank (one of my bosses) for the lovely yellow and pink roses that are brightening my house on an incredibly dreary morning. I think I had previously posted that I couldn’t have cut flowers – it’s ok, checked with the nurse and she said go for it!
Saturday, December 11, 2010
One Day at a Time
It is my first morning post-chemotherapy. I feel good.
The receiving of chemotherapy is much different than what I envisioned. My visions were built on episodes of ER and House - designed to be over-dramatized. Additionally, they most often show cancer in hospitals rather than stand alone oncology centers. Hospitals are always frenzied. I am lucky to have a nice center and can hopefully avoid the hospital altogether.
Yesterday morning was busy at the oncology center. The waiting room was filled with patients along with family and friends. Surprisingly, it was cheerful. There were people laughing, a plethora of holiday apparel, knitting, reading, and overachievers typing away on phones and devices. I am a people watcher, and in each little group I would try to figure out who the patient was. My television education told me that they would be pale and sullen and sad. I was so wrong. I see more often hope filled faces. They also seem to be able to just let the little things roll. Cancer patients are calm. I had a paradigm shift yesterday. Our local communities are filled with subcultures of people. We all belong to something - whether a church or a club/group with similar interests. And I came into this dreading that I would now be part of the cancer community. I didn't want membership! But selfish me didn't bother to think that nobody wanted membership. And these people are not frail and hopeless. They are strong and determined. These are my kindred spirits! And that is exactly what club I want to be in. I felt guilty that I was quick to judge.
Anyways, I arrived a little after 10 am yesterday and it was after 5 pm when we left. Some people are in and out in less than an hour. The course of chemotherapy varies greatly for each person.
My day started with a blood pressure check and a blood draw. They mix your drugs to order based on you blood counts. I was then set up in a room. They also have shared spaces but those are for the folks that are in and out more quickly. An IV was put in and I first put on an anti-allergy medication. They had me take steroids and a pill to help process dead cancer cells at home before I came as well. They also gave me a tylenol.
Next came my biological therapy - Rituxan. Receiving this was a majority of my day. This drug is like a miracle for folks who have the specific type of lymphoma I have. It literally targets the fast growing B-cells. This one drug is the reason they will use the word curable around me. This is not actually chemotherapy - it is used in tandem.
I did have one extremely minor reaction. The top of my head started itching like crazy! They gave me some IV benadryl and that stopped it almost immediately. It also put me in a benadryl haze for about two hours. It was all puppy dogs and butterflies during that time.
After the Rituxan, we got down to the business of real chemotherapy. But not before giving me multiple types of IV anti-nausea medication. The most infamous of my chemotherapy drugs is nicknamed red devil. It will make my urine red for two days. It is also the one most likely to have side effects.
We finished up a little after 5 pm and I felt great. I was starving (damn steroids!) and we headed to a nearby deli for soup and sandwiches. I am still being cautious and eating only bland foods and none of my favorites. We got home a bit after 7 and settled in to watch a movie. Except by the time we got the dogs fed and out and all the little things done, I literally fell asleep on the opening screen. One of the anti-nausea medications she gave me also causes drowsiness and anti-anxiety.
I slept well. I did have a little of that flu-like sleep where you get a little sweat on the back of your neck. My throat was a bit dry all night as well, but I kept water nearby so not a big deal. Rumor is that day three is when the fun will begin.
Thanks for all the E-mails, texts, and posts yesterday. I am blushing from all the attention!
- Posted using BlogPress from my iPad
The receiving of chemotherapy is much different than what I envisioned. My visions were built on episodes of ER and House - designed to be over-dramatized. Additionally, they most often show cancer in hospitals rather than stand alone oncology centers. Hospitals are always frenzied. I am lucky to have a nice center and can hopefully avoid the hospital altogether.
Yesterday morning was busy at the oncology center. The waiting room was filled with patients along with family and friends. Surprisingly, it was cheerful. There were people laughing, a plethora of holiday apparel, knitting, reading, and overachievers typing away on phones and devices. I am a people watcher, and in each little group I would try to figure out who the patient was. My television education told me that they would be pale and sullen and sad. I was so wrong. I see more often hope filled faces. They also seem to be able to just let the little things roll. Cancer patients are calm. I had a paradigm shift yesterday. Our local communities are filled with subcultures of people. We all belong to something - whether a church or a club/group with similar interests. And I came into this dreading that I would now be part of the cancer community. I didn't want membership! But selfish me didn't bother to think that nobody wanted membership. And these people are not frail and hopeless. They are strong and determined. These are my kindred spirits! And that is exactly what club I want to be in. I felt guilty that I was quick to judge.
Anyways, I arrived a little after 10 am yesterday and it was after 5 pm when we left. Some people are in and out in less than an hour. The course of chemotherapy varies greatly for each person.
My day started with a blood pressure check and a blood draw. They mix your drugs to order based on you blood counts. I was then set up in a room. They also have shared spaces but those are for the folks that are in and out more quickly. An IV was put in and I first put on an anti-allergy medication. They had me take steroids and a pill to help process dead cancer cells at home before I came as well. They also gave me a tylenol.
Next came my biological therapy - Rituxan. Receiving this was a majority of my day. This drug is like a miracle for folks who have the specific type of lymphoma I have. It literally targets the fast growing B-cells. This one drug is the reason they will use the word curable around me. This is not actually chemotherapy - it is used in tandem.
I did have one extremely minor reaction. The top of my head started itching like crazy! They gave me some IV benadryl and that stopped it almost immediately. It also put me in a benadryl haze for about two hours. It was all puppy dogs and butterflies during that time.
After the Rituxan, we got down to the business of real chemotherapy. But not before giving me multiple types of IV anti-nausea medication. The most infamous of my chemotherapy drugs is nicknamed red devil. It will make my urine red for two days. It is also the one most likely to have side effects.
We finished up a little after 5 pm and I felt great. I was starving (damn steroids!) and we headed to a nearby deli for soup and sandwiches. I am still being cautious and eating only bland foods and none of my favorites. We got home a bit after 7 and settled in to watch a movie. Except by the time we got the dogs fed and out and all the little things done, I literally fell asleep on the opening screen. One of the anti-nausea medications she gave me also causes drowsiness and anti-anxiety.
I slept well. I did have a little of that flu-like sleep where you get a little sweat on the back of your neck. My throat was a bit dry all night as well, but I kept water nearby so not a big deal. Rumor is that day three is when the fun will begin.
Thanks for all the E-mails, texts, and posts yesterday. I am blushing from all the attention!
- Posted using BlogPress from my iPad
Friday, December 10, 2010
Girl Interrupted
This could be my last “feeling fabulous” post for a while. I am T-minus 90 minutes until chemotherapy. I am scared.
Yesterday I went in for an hour of training on how it all works and what to expect. It was overwhelming. I have an entire notebook of how it works, what the side effects could be, and what to do. The woman who did the training was amazing. She was brilliant and had a wicked sense of humor. And she talked a mile-a-minute just like me. I feel as prepared as a person could when about to receive large doses of medication designed to break you down a bit.
I have a purse full of drugs ready for side-effect combat. It took multiple drug stores, and I still have two drugs that needed ordered that still need picked up. I just took a super-dose of prednisone as instructed this morning and that is probably making me feel even more anxious that I already did. I also took a drug that will help my kidneys process the destroyed cancer cells. When you have a large tumor, the dead cells resulting from chemotherapy can cause havoc.
I will be at chemotherapy all day – receiving both biological and chemotherapy. The biological agent they are using that is specific to Non-Hodgkins works like a miracle drug, but it can be a bit difficult to tolerate so they deliver it very very slowly and monitor it closely. In fact, a majority of my day will be spent receiving this one drug. If it goes well, it can take less time on my future visits.
The oncology center is nice – I had an opportunity to walk through yesterday and see the treatment area. She said because I’ll be all there all day, they will probably put in a bed (rather than a treatment chair). I have a bag packed with the iPad, reading material, and snacks. They don’t have a cafeteria, so you have to bring food in with you.
I need to go finish packing up. I’m hoping to be able to blog later. But we shall see.
Yesterday I went in for an hour of training on how it all works and what to expect. It was overwhelming. I have an entire notebook of how it works, what the side effects could be, and what to do. The woman who did the training was amazing. She was brilliant and had a wicked sense of humor. And she talked a mile-a-minute just like me. I feel as prepared as a person could when about to receive large doses of medication designed to break you down a bit.
I have a purse full of drugs ready for side-effect combat. It took multiple drug stores, and I still have two drugs that needed ordered that still need picked up. I just took a super-dose of prednisone as instructed this morning and that is probably making me feel even more anxious that I already did. I also took a drug that will help my kidneys process the destroyed cancer cells. When you have a large tumor, the dead cells resulting from chemotherapy can cause havoc.
I will be at chemotherapy all day – receiving both biological and chemotherapy. The biological agent they are using that is specific to Non-Hodgkins works like a miracle drug, but it can be a bit difficult to tolerate so they deliver it very very slowly and monitor it closely. In fact, a majority of my day will be spent receiving this one drug. If it goes well, it can take less time on my future visits.
The oncology center is nice – I had an opportunity to walk through yesterday and see the treatment area. She said because I’ll be all there all day, they will probably put in a bed (rather than a treatment chair). I have a bag packed with the iPad, reading material, and snacks. They don’t have a cafeteria, so you have to bring food in with you.
I need to go finish packing up. I’m hoping to be able to blog later. But we shall see.
Thursday, December 9, 2010
Blogging from the iPad
I'm going mobile!
Robbie thought I might want something to keep me busy for my six hour chemotherapy sessions. So he picked us up an iPad!
Who knew that all it would take is a serious illness to get such awesomeness.
Robbie thought I might want something to keep me busy for my six hour chemotherapy sessions. So he picked us up an iPad!
Who knew that all it would take is a serious illness to get such awesomeness.
Wednesday, December 8, 2010
To Face Unafraid
For the last 24 hours I’ve been hanging on for the ride.
Today was just supposed to be my MUGA heart scan. I had planned to spend my two hours at the hospital getting my scan, and then having a quiet working afternoon at home. But late last night, the oncologist’s office called and wanted me to come in today to talk about my PET Scan results. And since he wanted to see me so soon, I’d need to come to his Lenoir office where he’d be working today (about 35 minutes away). My imagination got the best of me, and within about ten minutes I had convinced myself that it was the worst case scenario. Why did he need to see me so soon – three days before my scheduled appointment? What could it be? What had the PET Scan revealed?
I arrived home from work last night in a panic. I walked in and Robbie was meeting with a contractor about getting a filter and humidifier installed in our central heat/air system. I had already called to tell him about the phone call so I think he knew I was on the verge of a meltdown. About five minutes before the clean-cut and perky BMW driving contractor leaves, Meadow (one of our beagles) starts puking. And not just once or twice, but huge piles all over the house. Robbie and I are both sopping up puke and he’s still trying to finish up with the contractor. The dog continues to puke the most noxious concoction on the planet. It felt like a surreal very dark sitcom. And I felt like I was going to literally explode from the stress of the situation.
The guy finally leaves, and I break down in tears about the call from the oncologist. Robbie said to me that he probably has everything he needs and just wants to get me moving forward. I am convinced that the lymphoma has seeped into every pore of my being and that the end is nigh.
Through the distraction of the Very Glee Christmas Special, red wine, dark chocolate, and a very positive husband that will not tolerate negative thinking I eventually calmed down.
Robbie again took a day off to parade me through the Hickory medical community. Note to self: bake cookies for his co-workers and boss who have been very flexible and supportive. We started our day with a quick breakfast at Panera and then I went for my first hospital procedure ever since I was born. Granted it was just a scan, but it’s the first time I had a hospital bracelet snapped on. It was a nifty procedure. They remove your own blood via an IV, mix it with radioactive tracer, and put it back. Then your heart is photographed with four gamma cameras to literally watch it travel in and out of all the chambers of your heart.
Once that was done, we headed to Lenoir to find out my fate. The Hickory oncology center is warm and inviting and new. Unfortunately, the Lenoir oncology center is small and crowded and old. I’m glad that this was a rare visit to the Lenoir center. The nurse checking me in today was the same nurse that I freaked out with about the bone marrow biopsy. I apologized to her and promised no freak outs today.
Finally, the long-awaited oncologist comes in to chat. He matter-of-factly states that he’s received the PET Scan results and that the tumor is really pressing on my trachea and wanted to know how I was feeling and breathing. I said that I was fabulous since he prescribed the steroids. He stated that because of the way it’s pushing on my trachea, that he’d like to start treatment sooner rather than later. He asked when I might be willing to start. I responded with “What time is it?” We asked what Stage the PET Scan showed, and he said it’s Stage II. The only place that it really showed up was in my neck and some of the lymph nodes in my chest. Additionally, my bone marrow came back clean. That was the part where I literally wanted to start dancing in the office. I was most terrified about the bone marrow.
He also said that this is a potentially curable form of cancer. That when I get through this, I have a chance for a cancer free existence! Seriously, it felt like Christmas. So many people don’t get such a hope-filled diagnosis.
I spent the next half hour making more appointments. Tomorrow I go to meet the radiation team. If I have radiation after the chemotherapy is finished; they like to be able to get a baseline prior to any treatment. I also have an appointment tomorrow for training on chemotherapy. A nurse will explain the process in detail, and I will get an opportunity to ask questions.
Friday I will go “live” with regards to treatment. I will head to the oncology center for my first dose of chemotherapy. For those familiar with treatment or interested in the drugs I will be receiving, the bundle is called R-CHOP. It’s an abbreviation for a bunch of drugs, but if you Google it in relationship to lymphoma you can get the skinny. Bottom line: it’s highly effective and kicks lymphoma butt! I have also been given drugs for nausea and anxiety. For the next three weeks I’ll have blood draws once a week as well to monitor progression. I will be getting chemotherapy once every 21 days. I don’t know how many courses yet.
I feel a bit high on life right now. I’m moving forward with my treatment, and that is step one to returning to a normal life. You can all remind me of this when I have no hair and I’m curled up trying not to throw up. I E-mailed a friend the other day that in light of this diagnosis – I feel the magic of the Holiday Season more than I ever have. I am overwhelmed by hope and human kindness.
I could write for hours – my mind is spinning. But it would be a ramble so I’ll spare the masses. For tonight, I’m making homemade marshmallows and relaxing with my BHE. Go hug a loved one!
Today was just supposed to be my MUGA heart scan. I had planned to spend my two hours at the hospital getting my scan, and then having a quiet working afternoon at home. But late last night, the oncologist’s office called and wanted me to come in today to talk about my PET Scan results. And since he wanted to see me so soon, I’d need to come to his Lenoir office where he’d be working today (about 35 minutes away). My imagination got the best of me, and within about ten minutes I had convinced myself that it was the worst case scenario. Why did he need to see me so soon – three days before my scheduled appointment? What could it be? What had the PET Scan revealed?
I arrived home from work last night in a panic. I walked in and Robbie was meeting with a contractor about getting a filter and humidifier installed in our central heat/air system. I had already called to tell him about the phone call so I think he knew I was on the verge of a meltdown. About five minutes before the clean-cut and perky BMW driving contractor leaves, Meadow (one of our beagles) starts puking. And not just once or twice, but huge piles all over the house. Robbie and I are both sopping up puke and he’s still trying to finish up with the contractor. The dog continues to puke the most noxious concoction on the planet. It felt like a surreal very dark sitcom. And I felt like I was going to literally explode from the stress of the situation.
The guy finally leaves, and I break down in tears about the call from the oncologist. Robbie said to me that he probably has everything he needs and just wants to get me moving forward. I am convinced that the lymphoma has seeped into every pore of my being and that the end is nigh.
Through the distraction of the Very Glee Christmas Special, red wine, dark chocolate, and a very positive husband that will not tolerate negative thinking I eventually calmed down.
Robbie again took a day off to parade me through the Hickory medical community. Note to self: bake cookies for his co-workers and boss who have been very flexible and supportive. We started our day with a quick breakfast at Panera and then I went for my first hospital procedure ever since I was born. Granted it was just a scan, but it’s the first time I had a hospital bracelet snapped on. It was a nifty procedure. They remove your own blood via an IV, mix it with radioactive tracer, and put it back. Then your heart is photographed with four gamma cameras to literally watch it travel in and out of all the chambers of your heart.
Once that was done, we headed to Lenoir to find out my fate. The Hickory oncology center is warm and inviting and new. Unfortunately, the Lenoir oncology center is small and crowded and old. I’m glad that this was a rare visit to the Lenoir center. The nurse checking me in today was the same nurse that I freaked out with about the bone marrow biopsy. I apologized to her and promised no freak outs today.
Finally, the long-awaited oncologist comes in to chat. He matter-of-factly states that he’s received the PET Scan results and that the tumor is really pressing on my trachea and wanted to know how I was feeling and breathing. I said that I was fabulous since he prescribed the steroids. He stated that because of the way it’s pushing on my trachea, that he’d like to start treatment sooner rather than later. He asked when I might be willing to start. I responded with “What time is it?” We asked what Stage the PET Scan showed, and he said it’s Stage II. The only place that it really showed up was in my neck and some of the lymph nodes in my chest. Additionally, my bone marrow came back clean. That was the part where I literally wanted to start dancing in the office. I was most terrified about the bone marrow.
He also said that this is a potentially curable form of cancer. That when I get through this, I have a chance for a cancer free existence! Seriously, it felt like Christmas. So many people don’t get such a hope-filled diagnosis.
I spent the next half hour making more appointments. Tomorrow I go to meet the radiation team. If I have radiation after the chemotherapy is finished; they like to be able to get a baseline prior to any treatment. I also have an appointment tomorrow for training on chemotherapy. A nurse will explain the process in detail, and I will get an opportunity to ask questions.
Friday I will go “live” with regards to treatment. I will head to the oncology center for my first dose of chemotherapy. For those familiar with treatment or interested in the drugs I will be receiving, the bundle is called R-CHOP. It’s an abbreviation for a bunch of drugs, but if you Google it in relationship to lymphoma you can get the skinny. Bottom line: it’s highly effective and kicks lymphoma butt! I have also been given drugs for nausea and anxiety. For the next three weeks I’ll have blood draws once a week as well to monitor progression. I will be getting chemotherapy once every 21 days. I don’t know how many courses yet.
I feel a bit high on life right now. I’m moving forward with my treatment, and that is step one to returning to a normal life. You can all remind me of this when I have no hair and I’m curled up trying not to throw up. I E-mailed a friend the other day that in light of this diagnosis – I feel the magic of the Holiday Season more than I ever have. I am overwhelmed by hope and human kindness.
I could write for hours – my mind is spinning. But it would be a ramble so I’ll spare the masses. For tonight, I’m making homemade marshmallows and relaxing with my BHE. Go hug a loved one!
Monday, December 6, 2010
Just Breathe...
When we were at the oncologist’s office on Friday, we asked him if there was anything he could do to help me breathe. Robbie explained to him that yes, we realize it’s a symptom and it’s not going to go away, but that it was becoming a symptom difficult to endure. By the end of last week, I couldn’t say more than a sentence or two without gasping for breath. When I was at work, I’d plan trips around the office – I’d make a trip to the bathroom, printer, and coffee pot and hope that no one wanted to chat while I was getting coffee, because by that point I really couldn’t speak! Stairs required 10 minutes of recovery time.
The oncologist said he could give me a steroid and that would probably help. We picked up the prednisone on our way home, and I took my first pill on Friday night. Friday night was the best night of sleep I’ve had in weeks. Saturday when I woke up I felt like a new person. I could breathe and I had energy. It was so nice to feel normal! This weekend I baked Christmas cookies, did laundry, went to the grocery store, went to a nice dinner with the hubbie, took the dogs out, vacuumed, did dishes, built a fire, etc.!
Robbie said I should take it easy. But I was feeling more like I should live it up. In a week or two, I’m going to be getting my ass kicked by chemotherapy, and I want to remember that I did have a brief window where I could enjoy the holiday season this year.
This morning I worked from home for a bit and then headed out to get my first PET Scan. After Friday’s painful procedures, this was a walk in the park. They injected me with some sort of radioactive sugar solution, and covered me with a warmed blanket and told me to just relax for an hour. Let me repeat that – they gave me a warmed blanket. Not one that could keep me warm, but one that was actually warmed. And on a day when it hasn’t gotten out of the 30s, this was an absolute delight. I laid under my warmed blanket happily while looking out the window at the cold wind blowing.
After my hour mandatory rest period, I was told that I must pee so that I could get rid of some of my radioactivity, and then I was taken into the scan area. Once I was all positioned on the scan table, they again covered me with warmed blankets. I love this place! The scan takes about 45 minutes and the hardest part of the whole procedure is holding very still. When it was all over, they gave me apple juice since I had been fasting since the previous night. Unfortunately I didn’t get to see the results. Those will be shared with me at my next oncology appointment.
I am starting to learn the ins and outs of getting the most out of my insurance. For today’s procedure and for the procedure I’m having Wednesday, I personally had to call to get a “pre-note”. I’m not sure why, but if I call and ask if they will pay for my test, they will! But if I don’t make the call, they don’t cover as much. I’ll call whoever they want me to if it means they cover it. I’ll even say please!
So overall, a great weekend and a pretty good day. Nice to know I can still have good days.
The oncologist said he could give me a steroid and that would probably help. We picked up the prednisone on our way home, and I took my first pill on Friday night. Friday night was the best night of sleep I’ve had in weeks. Saturday when I woke up I felt like a new person. I could breathe and I had energy. It was so nice to feel normal! This weekend I baked Christmas cookies, did laundry, went to the grocery store, went to a nice dinner with the hubbie, took the dogs out, vacuumed, did dishes, built a fire, etc.!
Robbie said I should take it easy. But I was feeling more like I should live it up. In a week or two, I’m going to be getting my ass kicked by chemotherapy, and I want to remember that I did have a brief window where I could enjoy the holiday season this year.
This morning I worked from home for a bit and then headed out to get my first PET Scan. After Friday’s painful procedures, this was a walk in the park. They injected me with some sort of radioactive sugar solution, and covered me with a warmed blanket and told me to just relax for an hour. Let me repeat that – they gave me a warmed blanket. Not one that could keep me warm, but one that was actually warmed. And on a day when it hasn’t gotten out of the 30s, this was an absolute delight. I laid under my warmed blanket happily while looking out the window at the cold wind blowing.
After my hour mandatory rest period, I was told that I must pee so that I could get rid of some of my radioactivity, and then I was taken into the scan area. Once I was all positioned on the scan table, they again covered me with warmed blankets. I love this place! The scan takes about 45 minutes and the hardest part of the whole procedure is holding very still. When it was all over, they gave me apple juice since I had been fasting since the previous night. Unfortunately I didn’t get to see the results. Those will be shared with me at my next oncology appointment.
I am starting to learn the ins and outs of getting the most out of my insurance. For today’s procedure and for the procedure I’m having Wednesday, I personally had to call to get a “pre-note”. I’m not sure why, but if I call and ask if they will pay for my test, they will! But if I don’t make the call, they don’t cover as much. I’ll call whoever they want me to if it means they cover it. I’ll even say please!
So overall, a great weekend and a pretty good day. Nice to know I can still have good days.
Friday, December 3, 2010
Pulp Fiction
Remember that scene in Pulp Fiction when John Travolta stabs a giant needle into Uma Thurman’s sternum? Me and Uma? We have something in common.
Today was a day of poking and prodding (P&P). I’ve read that I must get used to this. My first appointment in my day of P&P was to get a second FNA biopsy. In case you’ve forgotten, it’s a quick needle biopsy performed directly on the tumor. My surgeon said that they needed better samples, and that if he didn’t get two really good ones, that he would need to get three or four. I told him “well then, get two good ones.” The good news is that he was successful and only had to get two. The bad news is that I get to spend another two weeks looking like the victim of domestic violence. The last FNA left me terribly bruised – so much so that the bruise hadn’t fully healed two weeks later.
Immediately after the FNA, we headed to the oncology center. I need to comment on their lovely lobby. It had a beautiful vaulted wood ceiling and an enclosure filled with beautiful brightly colored birds. Did it make me feel better? Not really. But I must admit it was a nice distraction.
My next round of P&P began shortly after we arrived. The nurse took my vitals which included about six tubes of blood. Robbie said I deserved a cookie. My blood pressure was a little high, but considering I can’t breathe and I’m at an oncology center I wasn’t too surprised. Next we meet with my oncologist. He basically spent our time together asking questions about my medical history and how this whole thing developed. We asked a few questions as well. At this point, he believes I have non-hodgkins large B cell lymphoma. I just looked this up online and it said “responds well to treatment.” By golly, at least that is a positive thing. He of course, wants to run a battery of tests, but said most likely we’d treat with chemotherapy in three week courses. As he was leaving the room he said he would talk to the person that would help to get some tests arranged including a bone-marrow biopsy.
A lovely nurse came in and asked me to follow her. She took me in another room and told me we’d be doing the bone marrow test RIGHT NOW. I hate to admit this, but I totally freaked out. I had read online that these were extremely painful and it was the one thing I’ve dreaded most in everything I read. Take my hair, BUT DON’T HURT ME. I asked Robbie to leave the room, which totally hurt his feelings. I didn’t want him to see me weak and freaking out. I told her that I read online that it was very painful and very difficult in overweight patients. She said I need to throw the computer away and that it would be fine.
Eventually I calmed down and the oncologist came in to perform the procedure. Unfortunately, I have some serious love handles and he didn’t feel comfortable that he could hit the right spot in my back. He said we had one other option. The sternum. He said that this procedure would be “uncomfortable”. Really? He prepped everything and numbed the area. Once numb, I could feel the pressure of him tapping on my bone, but at that point there was no pain. That was before they started sucking the marrow. I cannot even describe how “uncomfortable” it was. It is the worst feeling I can imagine and I can’t even describe it, but the good news is that it only last about 3 or 4 seconds. Twice. But then it was over, and he said he got enough material so I was relieved.
My future brings a PET Scan on Monday to determine if the cancer has spread. Wednesday I have a heart Ultrasound which is routine before starting chemotherapy, and the following Monday I meet with the oncologist again. At that point he will have all the test results and we will begin our attack. He also gave me some steroids to help me with my breathing. I just took one, and I really hope it will help me breathe better. I have holiday cookies to bake by Monday for our Annual Cookie for Clients Event!
I am glad that all the tests are scheduled and that soon we’ll have all the information necessary to start fighting this. I feel tired and I wish that the big jab in the chest would’ve been adrenaline like Uma was lucky enough to receive. But at least I’m a step closer to a resolution.
Thanks to Vicky and Alan for the post-biopsy wine. You guys rock.
Today was a day of poking and prodding (P&P). I’ve read that I must get used to this. My first appointment in my day of P&P was to get a second FNA biopsy. In case you’ve forgotten, it’s a quick needle biopsy performed directly on the tumor. My surgeon said that they needed better samples, and that if he didn’t get two really good ones, that he would need to get three or four. I told him “well then, get two good ones.” The good news is that he was successful and only had to get two. The bad news is that I get to spend another two weeks looking like the victim of domestic violence. The last FNA left me terribly bruised – so much so that the bruise hadn’t fully healed two weeks later.
Immediately after the FNA, we headed to the oncology center. I need to comment on their lovely lobby. It had a beautiful vaulted wood ceiling and an enclosure filled with beautiful brightly colored birds. Did it make me feel better? Not really. But I must admit it was a nice distraction.
My next round of P&P began shortly after we arrived. The nurse took my vitals which included about six tubes of blood. Robbie said I deserved a cookie. My blood pressure was a little high, but considering I can’t breathe and I’m at an oncology center I wasn’t too surprised. Next we meet with my oncologist. He basically spent our time together asking questions about my medical history and how this whole thing developed. We asked a few questions as well. At this point, he believes I have non-hodgkins large B cell lymphoma. I just looked this up online and it said “responds well to treatment.” By golly, at least that is a positive thing. He of course, wants to run a battery of tests, but said most likely we’d treat with chemotherapy in three week courses. As he was leaving the room he said he would talk to the person that would help to get some tests arranged including a bone-marrow biopsy.
A lovely nurse came in and asked me to follow her. She took me in another room and told me we’d be doing the bone marrow test RIGHT NOW. I hate to admit this, but I totally freaked out. I had read online that these were extremely painful and it was the one thing I’ve dreaded most in everything I read. Take my hair, BUT DON’T HURT ME. I asked Robbie to leave the room, which totally hurt his feelings. I didn’t want him to see me weak and freaking out. I told her that I read online that it was very painful and very difficult in overweight patients. She said I need to throw the computer away and that it would be fine.
Eventually I calmed down and the oncologist came in to perform the procedure. Unfortunately, I have some serious love handles and he didn’t feel comfortable that he could hit the right spot in my back. He said we had one other option. The sternum. He said that this procedure would be “uncomfortable”. Really? He prepped everything and numbed the area. Once numb, I could feel the pressure of him tapping on my bone, but at that point there was no pain. That was before they started sucking the marrow. I cannot even describe how “uncomfortable” it was. It is the worst feeling I can imagine and I can’t even describe it, but the good news is that it only last about 3 or 4 seconds. Twice. But then it was over, and he said he got enough material so I was relieved.
My future brings a PET Scan on Monday to determine if the cancer has spread. Wednesday I have a heart Ultrasound which is routine before starting chemotherapy, and the following Monday I meet with the oncologist again. At that point he will have all the test results and we will begin our attack. He also gave me some steroids to help me with my breathing. I just took one, and I really hope it will help me breathe better. I have holiday cookies to bake by Monday for our Annual Cookie for Clients Event!
I am glad that all the tests are scheduled and that soon we’ll have all the information necessary to start fighting this. I feel tired and I wish that the big jab in the chest would’ve been adrenaline like Uma was lucky enough to receive. But at least I’m a step closer to a resolution.
Thanks to Vicky and Alan for the post-biopsy wine. You guys rock.
Wednesday, December 1, 2010
Numb. Jab. Repeat.
I had a great showing at this afternoon’s tumor board. It was so fabulous that they want more.
My favorite surgeon called this afternoon to let me know that my case was presented, and that my oncologist was part of the review team. In an effort to have some sort of bedside manner, he said that the oncologist was looking forward to meeting me later this week. Then he broke the news that they need to perform another FNA biopsy. On the original pathology report, it was suggested that they may want to perform an additional test for more definitive information – not to the fact that I have cancer, but in classifying what kind. The FNA isn’t too big of deal. It’s a little painful and causes some serious neck bruising, but the good news is that it’s over in about a half an hour. I have it scheduled for Friday, since I already had to take time off for the oncology appointment.
Determining the type of cancer is critically important to determining my treatment. There are two categories of lymphoma, and tens of sub-types. It’s been difficult for me to research the disease just in the fact that I don’t know exactly what I have. The pathology said it was “large cell lymphoma”, but didn’t specify if it was T-Cell, B-Cell, Hodgkins, Non-Hodgkins, etc.
The oncologist also wants me scheduled for a PET scan. I completed expected this. This is a high-tech CT type scan that is performed with contrast. Some sort of contrast is ingested, and then I will have to sit or lie very still for a while. The contrast is attracted to highly active cells – i.e., cancer cells. We’re hoping the cancer is just camping out in my neck and hasn’t decided to go exploring. The PET scan will be Monday. Apparently, this can take a couple of hours so there goes another day wasted!
I need to get over the fact that I’ll be taking some serious time off. And luckily my workplace has been very gracious in trying to find ways to make the whole balancing work and cancer concept a bit easier. They’ve lined up someone to cover my work duties for whatever time I need to take off. The great news is they couldn’t have assigned a better person. She is someone I consider a mentor and a marketing guru, and if I was given a choice of any person within the company to take this on she would have been first on the list.
Each time I write this blog, I think to myself that maybe I don’t need to give the world a play-by-play. But it’s really more for me to work through my own feelings. I don’t know if it’s like this with everyone, but when you are diagnosed with cancer it becomes all you can think about. I don’t think I go five minutes without thinking about it. And part of it is that cancer creeps into every aspect of your life. At this time of year, I have a calendar full of holiday parties, the annual Hickory Wine Shoppe champagne tasting, cutting down a Christmas tree, house hunting with my Mom, etc. And every time I think of one of these things, I have to wonder “Will I be on chemotherapy by then? If so, will I be well enough to do it? Will I have lost my hair by then?” I even think further ahead to the vacation we have scheduled in May and wonder if we’ll even get to go.
I am anxious to talk with other cancer patients to find out if this type of thinking eventually wanes and if there is a new normal that develops to help one cope with the uncertainty.
My favorite surgeon called this afternoon to let me know that my case was presented, and that my oncologist was part of the review team. In an effort to have some sort of bedside manner, he said that the oncologist was looking forward to meeting me later this week. Then he broke the news that they need to perform another FNA biopsy. On the original pathology report, it was suggested that they may want to perform an additional test for more definitive information – not to the fact that I have cancer, but in classifying what kind. The FNA isn’t too big of deal. It’s a little painful and causes some serious neck bruising, but the good news is that it’s over in about a half an hour. I have it scheduled for Friday, since I already had to take time off for the oncology appointment.
Determining the type of cancer is critically important to determining my treatment. There are two categories of lymphoma, and tens of sub-types. It’s been difficult for me to research the disease just in the fact that I don’t know exactly what I have. The pathology said it was “large cell lymphoma”, but didn’t specify if it was T-Cell, B-Cell, Hodgkins, Non-Hodgkins, etc.
The oncologist also wants me scheduled for a PET scan. I completed expected this. This is a high-tech CT type scan that is performed with contrast. Some sort of contrast is ingested, and then I will have to sit or lie very still for a while. The contrast is attracted to highly active cells – i.e., cancer cells. We’re hoping the cancer is just camping out in my neck and hasn’t decided to go exploring. The PET scan will be Monday. Apparently, this can take a couple of hours so there goes another day wasted!
I need to get over the fact that I’ll be taking some serious time off. And luckily my workplace has been very gracious in trying to find ways to make the whole balancing work and cancer concept a bit easier. They’ve lined up someone to cover my work duties for whatever time I need to take off. The great news is they couldn’t have assigned a better person. She is someone I consider a mentor and a marketing guru, and if I was given a choice of any person within the company to take this on she would have been first on the list.
Each time I write this blog, I think to myself that maybe I don’t need to give the world a play-by-play. But it’s really more for me to work through my own feelings. I don’t know if it’s like this with everyone, but when you are diagnosed with cancer it becomes all you can think about. I don’t think I go five minutes without thinking about it. And part of it is that cancer creeps into every aspect of your life. At this time of year, I have a calendar full of holiday parties, the annual Hickory Wine Shoppe champagne tasting, cutting down a Christmas tree, house hunting with my Mom, etc. And every time I think of one of these things, I have to wonder “Will I be on chemotherapy by then? If so, will I be well enough to do it? Will I have lost my hair by then?” I even think further ahead to the vacation we have scheduled in May and wonder if we’ll even get to go.
I am anxious to talk with other cancer patients to find out if this type of thinking eventually wanes and if there is a new normal that develops to help one cope with the uncertainty.
Tuesday, November 30, 2010
Tumor Idol
Tomorrow I go before the Tumor Board! I hope they like me!
Ok, it’s not actually me going before the board – just my case file. Here in Hickory, they have a regularly meeting of the Tumor Board. It is a forum to collectively discuss tumor cases and brainstorm a course of action. So tomorrow while I’m working and trying hard not to sound like Darth Vadar breathing, my tumor will be in the spotlight. I have my first oncology appointment on Friday, and the oncologist will be armed with the recommendations of the tumor board.
For me, knowing that I have cancer makes me want to start treatment RIGHT NOW. I hate the thought of the cancer cells growing and spreading and wreaking havoc. The waiting is agony. It’s hard to go to work every day and have any type of focus. But not going to work isn’t really an option. When you know cancer treatment is just over the horizon, you start to really covet all your available sick and vacation time.
I did have a great distraction today. A good friend drove into Charlotte to have lunch with me. I worked with her for a few months when I first moved to North Carolina. She and I hit it off almost immediately and very few people can make me laugh the way she does. We had a fabulous lunch and I laughed until I seriously couldn’t breathe. This tumor and it’s need to push against my windpipe is completely cramping my style.
When I got back to the office after lunch, I felt exhausted. I think it was a combination of the laughing and not being able to catch my breath, along with poor sleep from the windpipe issue. I think I need a beanbag in my office so I can take naps.
I’m home now relaxing, and Robbie is working on his bedroom painting project. The color is called “Restful” by Behr and it’s fabulous. My lofty goal for the evening is to stay awake long enough to watch Glee. I also need to practice dialing in some votes for my tumor's big debut tomorrow.
Ok, it’s not actually me going before the board – just my case file. Here in Hickory, they have a regularly meeting of the Tumor Board. It is a forum to collectively discuss tumor cases and brainstorm a course of action. So tomorrow while I’m working and trying hard not to sound like Darth Vadar breathing, my tumor will be in the spotlight. I have my first oncology appointment on Friday, and the oncologist will be armed with the recommendations of the tumor board.
For me, knowing that I have cancer makes me want to start treatment RIGHT NOW. I hate the thought of the cancer cells growing and spreading and wreaking havoc. The waiting is agony. It’s hard to go to work every day and have any type of focus. But not going to work isn’t really an option. When you know cancer treatment is just over the horizon, you start to really covet all your available sick and vacation time.
I did have a great distraction today. A good friend drove into Charlotte to have lunch with me. I worked with her for a few months when I first moved to North Carolina. She and I hit it off almost immediately and very few people can make me laugh the way she does. We had a fabulous lunch and I laughed until I seriously couldn’t breathe. This tumor and it’s need to push against my windpipe is completely cramping my style.
When I got back to the office after lunch, I felt exhausted. I think it was a combination of the laughing and not being able to catch my breath, along with poor sleep from the windpipe issue. I think I need a beanbag in my office so I can take naps.
I’m home now relaxing, and Robbie is working on his bedroom painting project. The color is called “Restful” by Behr and it’s fabulous. My lofty goal for the evening is to stay awake long enough to watch Glee. I also need to practice dialing in some votes for my tumor's big debut tomorrow.
Monday, November 29, 2010
Men Are From Mars
Anyone who has ever read “Men Are From Mars, Women Are From Venus” knows that men have a fundamental need to fix things. It is difficult for them to just to sit back and do nothing when there is something wrong. Particularly when it’s something wrong with someone they love.
Every since I received the diagnosis, Robbie has been in “fix-it” mode. Except there is one small problem. He can’t fix the one thing he really wants to fix. So he's had to displace his need to fix. Over the weekend he researched what types of things can be done around the house to prepare for chemotherapy. I think most people know, but chemotherapy breaks down your immune system. This will leave me vulnerable to bacteria and infections so it’s important to limit exposure to viruses. The cleaner my environment, the better.
He came home from Bed Bath and Beyond yesterday with a humidifier, cleaners, and a new mop. He was disappointed that they didn’t have the HEPA filter he was hoping to get and plans to order that online. He also spent yesterday doing laundry, bleaching surfaces, and cleaning our bedroom. He’s also informed me that once chemotherapy starts I can’t garden, cannot have cut flowers in the house, can only have meat that is well-cooked, and that the dogs must be bathed regularly.
I had mentioned to him that I would like a TV for our bedroom since odds are that I’ll be resting a bit in the near future. I was thinking it would make a great Christmas gift for me. He is a man of action - the TV is already on order and will be here later this week. We had also talked about painting our bedroom sometime soon. It was still "contractor white" from when we moved in. As I sit and type this, he is upstairs painting a lovely shade of green he picked up at Home Depot called "Restful."
It is only for the sake of humor that I make light of his obsession with preparing a sanctuary for me. I cannot express how much I appreciate that I have a husband who is a positive force and wants to be on the front lines fighting with me. As my friend Erica and I often joke, I have the “BHE”. (Best Husband Ever).
In other news, the word is out. I’ve been having “the talk” with all the people I need to have it with – family, boss, co-workers, and friends. I appreciate those who have the ability to share my dark humor during this time. Today, as I was grabbing M&Ms out of the candy bowl at work, one of my co-workers said to me “Don’t be spreading your cancer in the M&Ms!” This made me laugh out loud.
Many people don't even want to talk about it. Heck, if it weren't me, I probably would be that person. I can understand why it's an uncomfortable topic. No one wants to talk about something that makes us acutely aware of our own mortality. And I also understand that many people just have no idea what to say. To those folks I say gifts will easily take the place of kind words. Send cookies or chocolate - just no cut flowers please :)
In all seriousness, I have gotten many E-mails, posts, calls, etc. with an amazing amount of support. I always say that I'm surrounded by the best group of folks a girl could know. You don't know how every little ding on my blackberry with a new post makes me smile and lightens the weight of the world just a bit.
Every since I received the diagnosis, Robbie has been in “fix-it” mode. Except there is one small problem. He can’t fix the one thing he really wants to fix. So he's had to displace his need to fix. Over the weekend he researched what types of things can be done around the house to prepare for chemotherapy. I think most people know, but chemotherapy breaks down your immune system. This will leave me vulnerable to bacteria and infections so it’s important to limit exposure to viruses. The cleaner my environment, the better.
He came home from Bed Bath and Beyond yesterday with a humidifier, cleaners, and a new mop. He was disappointed that they didn’t have the HEPA filter he was hoping to get and plans to order that online. He also spent yesterday doing laundry, bleaching surfaces, and cleaning our bedroom. He’s also informed me that once chemotherapy starts I can’t garden, cannot have cut flowers in the house, can only have meat that is well-cooked, and that the dogs must be bathed regularly.
I had mentioned to him that I would like a TV for our bedroom since odds are that I’ll be resting a bit in the near future. I was thinking it would make a great Christmas gift for me. He is a man of action - the TV is already on order and will be here later this week. We had also talked about painting our bedroom sometime soon. It was still "contractor white" from when we moved in. As I sit and type this, he is upstairs painting a lovely shade of green he picked up at Home Depot called "Restful."
It is only for the sake of humor that I make light of his obsession with preparing a sanctuary for me. I cannot express how much I appreciate that I have a husband who is a positive force and wants to be on the front lines fighting with me. As my friend Erica and I often joke, I have the “BHE”. (Best Husband Ever).
In other news, the word is out. I’ve been having “the talk” with all the people I need to have it with – family, boss, co-workers, and friends. I appreciate those who have the ability to share my dark humor during this time. Today, as I was grabbing M&Ms out of the candy bowl at work, one of my co-workers said to me “Don’t be spreading your cancer in the M&Ms!” This made me laugh out loud.
Many people don't even want to talk about it. Heck, if it weren't me, I probably would be that person. I can understand why it's an uncomfortable topic. No one wants to talk about something that makes us acutely aware of our own mortality. And I also understand that many people just have no idea what to say. To those folks I say gifts will easily take the place of kind words. Send cookies or chocolate - just no cut flowers please :)
In all seriousness, I have gotten many E-mails, posts, calls, etc. with an amazing amount of support. I always say that I'm surrounded by the best group of folks a girl could know. You don't know how every little ding on my blackberry with a new post makes me smile and lightens the weight of the world just a bit.
Sunday, November 28, 2010
A Surprise Diagnosis
I have cancer.
It’s so bizarre to type those words. It still doesn’t seem real. It seems like a weird dream. But days have gone by and I can’t seem to wake up.
I think it’s important to share how it was discovered. As I research other discovery stories, I am learning that it’s less often straightforward and frequently a surprise diagnosis. And even when the clues may be obvious, the tendency is to continue to believe that it couldn’t possibly be true.
My story actually starts back in September. I had a funky ear/throat thing going on. Seemed sort of like a cold, but my ear ached and my lymph nodes were a little swollen. I was also falling asleep on the couch at about 8:30 or 9 every night. Robbie encouraged me to go to the Doctor. I didn’t have a regularly doctor yet (other than my gyn) so I just went to a walk-in clinic. I was given a quick diagnosis of an ear infection. I’m sure they get a dozen of these types of things every day. They gave me what I came for – antibiotics.
I took them, and I felt a little better. Lymph nodes were still swollen, but I had also began to have a toothache. I made an appointment for the dentist, and he said I needed a root canal. He gave me another round of antiobiotics and some pain medication. I mentioned that my lymph nodes were swollen, but he said it was most likely related to the infection in the tooth. And after looking online, I concurred. Don’t we all do that? Try to self-diagnose? So I made an appointment for two weeks out for the root canal. By this time it’s October. My lymph nodes in my neck felt hard and swollen, but I assumed it was the back-to-back infections. I knew that as soon as I had my root canal it would feel immediately better.
So the root canal came and went, but the swelling in my neck did not. And I was feeling a little short of breath. And as an overweight person, I assumed I was just really in bad shape – particularly because I hadn’t felt great the last few weeks and hadn’t been doing much because of the infection and the root canal. I contacted the all-knowing Internet again, and most folks who had swollen lymph nodes related to dental infection, had almost immediate relief once they had the root canal. I researched swollen lymph nodes and found everything from mono to lymphoma. But again, I assumed it was probably nothing. Even though I did have a voice in the back of my head saying otherwise.
Another week or two goes by, and no change. In fact, the lump may have even gotten bigger. Robbie encourages me to make an appointment with his Doctor. I actually called for two days trying to make the appointment – for some reason all I could get was the answering machine. But finally they return my call and I have an appointment for the next week.
At the appointment, the doctor feels my neck, and says yes – feels like a swollen lymph node. But I didn’t have any sort of fever. So she refers me to a surgical consult so that he can take a look. That appointment is the following week. At this point, I’m annoyed that I’m going to the Doctor almost every week. I’m also still breathless and tired of the swelling in my neck. So I show up at the surgical appointment and he seems to think it’s my thyroid. He wants to do an Ultrasound, but the technician is out because it’s her Grandfather’s Birthday or something like that. So guess what? I have an appointment for the following week.
I show up for the Ultrasound. The ultrasound technician must have spent 25 minutes repeatedly scanning my neck. Then she called the Doctor in, and went over several areas again. They were still talking thyroid, but I did hear her say, “see that lymphnode right there” and “complex”. I couldn’t see the screen because I need to look up so they could scan. He decided to do a fine need aspiration (FNA) biopsy while I was there. At this point he still felt it was a thyroid growth, and he said it was his opinion that I would most likely need to have my thyroid removed.
After the Doctor left the room, I asked the Ultrasound tech if she thought it was anything. All she said was “I’m very concerned.” The biopsy results will take a few days, so they make me an appointment for the following week to discuss results. The week of that appointment is Thanksgiving so they are closed for a few days, so there is only a one day window for the appointment, or I’d have to wait until after the Holiday. And that one day is a day I have an all day meeting at work. Great. So I take a late day appointment, and make plans to miss a portion of my work meeting.
At that point, I’m very concerned. I go home and research thyroid removal and thyroid cancer. I fully expected a diagnosis of thyroid cancer. But in most cases they would surgically remove the thyroid. And usually you didn’t even have to have chemotherapy. Yes, it would be a lifetime of taking pills, but I could deal with that.
Robbie goes with me to my next appointment. And I kept telling him he didn’t need to, and that I’d be fine. I can be so stubborn and independent at times – often to my own demise. So the Doctor comes in, and we joke about the bruising on my neck from the FNA he’d done the week before. Robbie was not thrilled with this guy and is annoyed already. He’s a young surgeon and has a cocky demeanor to him. The Doctor tells me it is not my thyroid, and that in fact the pathology said it wasn’t even thyroid tissue that was biopsied. He says it’s large cell lymphoma. And I say “Cancer? Really?” It’s completely surreal at this point. The Doctor is actually smiling and saying “But now we know what it is. And I’m just a dumb surgeon and I’m going to refer you to someone who can handle this.” And I start to ask questions like “What kind of lymphoma?” And he said he doesn’t know.
At this point, I am trying to hold it together, but it’s just not happening. I have tears welling up, and I feel numb. He leaves the room, with a pat on the shoulder, and I start full-on crying. The nurse comes in with my appointment (for the next week of course) and offers to check me out at the desk and shows me the back door so I don’t need to go through the lobby.
I get to the car and start sobbing. I really feel like I can’t breathe. I roll down the window and spend about 10 minutes just crying. Robbie is very quiet. We’re both in shock I think. We go straight home. By the time we’re home I’ve stopped crying. Robbie is a rock. I can’t remember what he says exactly and the sequence, but I know he told me over and over that we’d get through it, and that I was going to be ok, and that we’d fight it – whatever it takes. We do a little online research, but I don’t think either of us had much stomach for it that evening.
My head was swirling with 100 different thoughts. And it is weird, but it wasn’t the important things like prognosis or finances or selecting an oncologist. I think the important things were just too big for me to even process yet. Instead it was the mundane detailed stuff. “Will we be able to have the Christmas Party with the wine club?” “Man, my boss is not going to be happy about this.” “Can I drive myself home from chemotherapy?” “Do the dogs know I have cancer? Can’t they smell these things?”
I think I’ll end this first post here. It is therapeutic to write this down. To some extent it feels like I’m releasing some of the negative energy so that I may focus on the positive. This is going to be a long journey, and I know I will need all the support I can find. I hope you will share this journey with me and send me loads of positive vibes because I am taking up a collection! I am doing something I never do. I am asking you for your help. I want you to help me fight this. Not with pity, but with your friendship and your amazing wit and your belief that I’m going to conquer this.
Stay tuned, much more to share.
It’s so bizarre to type those words. It still doesn’t seem real. It seems like a weird dream. But days have gone by and I can’t seem to wake up.
I think it’s important to share how it was discovered. As I research other discovery stories, I am learning that it’s less often straightforward and frequently a surprise diagnosis. And even when the clues may be obvious, the tendency is to continue to believe that it couldn’t possibly be true.
My story actually starts back in September. I had a funky ear/throat thing going on. Seemed sort of like a cold, but my ear ached and my lymph nodes were a little swollen. I was also falling asleep on the couch at about 8:30 or 9 every night. Robbie encouraged me to go to the Doctor. I didn’t have a regularly doctor yet (other than my gyn) so I just went to a walk-in clinic. I was given a quick diagnosis of an ear infection. I’m sure they get a dozen of these types of things every day. They gave me what I came for – antibiotics.
I took them, and I felt a little better. Lymph nodes were still swollen, but I had also began to have a toothache. I made an appointment for the dentist, and he said I needed a root canal. He gave me another round of antiobiotics and some pain medication. I mentioned that my lymph nodes were swollen, but he said it was most likely related to the infection in the tooth. And after looking online, I concurred. Don’t we all do that? Try to self-diagnose? So I made an appointment for two weeks out for the root canal. By this time it’s October. My lymph nodes in my neck felt hard and swollen, but I assumed it was the back-to-back infections. I knew that as soon as I had my root canal it would feel immediately better.
So the root canal came and went, but the swelling in my neck did not. And I was feeling a little short of breath. And as an overweight person, I assumed I was just really in bad shape – particularly because I hadn’t felt great the last few weeks and hadn’t been doing much because of the infection and the root canal. I contacted the all-knowing Internet again, and most folks who had swollen lymph nodes related to dental infection, had almost immediate relief once they had the root canal. I researched swollen lymph nodes and found everything from mono to lymphoma. But again, I assumed it was probably nothing. Even though I did have a voice in the back of my head saying otherwise.
Another week or two goes by, and no change. In fact, the lump may have even gotten bigger. Robbie encourages me to make an appointment with his Doctor. I actually called for two days trying to make the appointment – for some reason all I could get was the answering machine. But finally they return my call and I have an appointment for the next week.
At the appointment, the doctor feels my neck, and says yes – feels like a swollen lymph node. But I didn’t have any sort of fever. So she refers me to a surgical consult so that he can take a look. That appointment is the following week. At this point, I’m annoyed that I’m going to the Doctor almost every week. I’m also still breathless and tired of the swelling in my neck. So I show up at the surgical appointment and he seems to think it’s my thyroid. He wants to do an Ultrasound, but the technician is out because it’s her Grandfather’s Birthday or something like that. So guess what? I have an appointment for the following week.
I show up for the Ultrasound. The ultrasound technician must have spent 25 minutes repeatedly scanning my neck. Then she called the Doctor in, and went over several areas again. They were still talking thyroid, but I did hear her say, “see that lymphnode right there” and “complex”. I couldn’t see the screen because I need to look up so they could scan. He decided to do a fine need aspiration (FNA) biopsy while I was there. At this point he still felt it was a thyroid growth, and he said it was his opinion that I would most likely need to have my thyroid removed.
After the Doctor left the room, I asked the Ultrasound tech if she thought it was anything. All she said was “I’m very concerned.” The biopsy results will take a few days, so they make me an appointment for the following week to discuss results. The week of that appointment is Thanksgiving so they are closed for a few days, so there is only a one day window for the appointment, or I’d have to wait until after the Holiday. And that one day is a day I have an all day meeting at work. Great. So I take a late day appointment, and make plans to miss a portion of my work meeting.
At that point, I’m very concerned. I go home and research thyroid removal and thyroid cancer. I fully expected a diagnosis of thyroid cancer. But in most cases they would surgically remove the thyroid. And usually you didn’t even have to have chemotherapy. Yes, it would be a lifetime of taking pills, but I could deal with that.
Robbie goes with me to my next appointment. And I kept telling him he didn’t need to, and that I’d be fine. I can be so stubborn and independent at times – often to my own demise. So the Doctor comes in, and we joke about the bruising on my neck from the FNA he’d done the week before. Robbie was not thrilled with this guy and is annoyed already. He’s a young surgeon and has a cocky demeanor to him. The Doctor tells me it is not my thyroid, and that in fact the pathology said it wasn’t even thyroid tissue that was biopsied. He says it’s large cell lymphoma. And I say “Cancer? Really?” It’s completely surreal at this point. The Doctor is actually smiling and saying “But now we know what it is. And I’m just a dumb surgeon and I’m going to refer you to someone who can handle this.” And I start to ask questions like “What kind of lymphoma?” And he said he doesn’t know.
At this point, I am trying to hold it together, but it’s just not happening. I have tears welling up, and I feel numb. He leaves the room, with a pat on the shoulder, and I start full-on crying. The nurse comes in with my appointment (for the next week of course) and offers to check me out at the desk and shows me the back door so I don’t need to go through the lobby.
I get to the car and start sobbing. I really feel like I can’t breathe. I roll down the window and spend about 10 minutes just crying. Robbie is very quiet. We’re both in shock I think. We go straight home. By the time we’re home I’ve stopped crying. Robbie is a rock. I can’t remember what he says exactly and the sequence, but I know he told me over and over that we’d get through it, and that I was going to be ok, and that we’d fight it – whatever it takes. We do a little online research, but I don’t think either of us had much stomach for it that evening.
My head was swirling with 100 different thoughts. And it is weird, but it wasn’t the important things like prognosis or finances or selecting an oncologist. I think the important things were just too big for me to even process yet. Instead it was the mundane detailed stuff. “Will we be able to have the Christmas Party with the wine club?” “Man, my boss is not going to be happy about this.” “Can I drive myself home from chemotherapy?” “Do the dogs know I have cancer? Can’t they smell these things?”
I think I’ll end this first post here. It is therapeutic to write this down. To some extent it feels like I’m releasing some of the negative energy so that I may focus on the positive. This is going to be a long journey, and I know I will need all the support I can find. I hope you will share this journey with me and send me loads of positive vibes because I am taking up a collection! I am doing something I never do. I am asking you for your help. I want you to help me fight this. Not with pity, but with your friendship and your amazing wit and your belief that I’m going to conquer this.
Stay tuned, much more to share.
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