You may lose your hair. Or it may just thin out.
You may feel nausea, but you shouldn't be vomiting.
You may have dry skin.
You may be constipated.
You may not be able to sleep.
You may feel worse as you receive more treatments.
You may feel REALLY tired.
You may lose weight.
You may gain weight.
You may feel depressed.
I feel like being told about the possible effects of the chemo treatments has been one long, involved TV commercial for a drug. One of the most frustrating things about having cancer and getting treated for it has been finding out that the experience and the effects are unique to the person getting treated.
Yes, I know that my prognosis is good because I've caught it relatively early, my overall health is good, and I'm young. But I would like to have a better idea about how things will be for future treatments.
I'm a planner. Most of the jobs I've had in my life have involved some pretty intricate planning. I like to know where I'm going and what I'm doing way in advance. I used to think of myself as spontaneous, but I've learned over the years that I'm the opposite. Why in the world would I choose to be a teacher? In case you didn't know, most teachers are control freaks. Every minute is planned.
So when the course of treatments and the effects have been described to me in vague terms, my mind goes crazy. How do I prepare for this? How long will the effects last? What can I do or not do or plan for in the other areas of my life?
I think someone or something is trying to teach me a lesson. It's pretty obvious that I'm uncomfortable with vagueness. I need to stop worrying, stop over analyzing, and just let it happen. Because it will happen. I also need to let others help, listen to my body, and slow down.
A lesson to be learned. Without a lesson plan. Can't I just call for a sub?
Tuesday, October 30, 2012
Friday, October 26, 2012
Fattening up for the Slaughter
TGIF. This week felt like one of those weeks that just. wouldn't. end. I think part of it was the fact of me coming off a post-chemo weekend, and also that I had something going on every night after school. The days were filled with normal school stuff, but added to the mix was a new student starting (who doesn't speak English - thankfully I have another student who speaks Japanese), and the beginning of a new literacy rotation adding 7 more kids to my classroom.
A lot of you have been asking how the chemo went and how I felt afterward. The following is a recap - sorry, it's kinda boring... Friday I felt tired, which I know was mostly due to being done with and exhausted from the stress of chemo day one.
Saturday I felt like a rock star. I woke up and made some toast and smoothies. My mom and I went for a 45 minute walk. I read, did some schoolwork, slept, and ate like a champ. While doing all of this, I knew that Sunday could be totally different. They kept warning me that the steroid would wear off by then.
Sunday, I just felt "off". No nausea, but just not myself. I also had no appetite for anything. I managed to eat a piece of toast for breakfast, some soup for lunch, and finally Sunday night I managed to eat some dinner after eating some Cheez-its (thanks, Anne!). All the while I knew that I needed to eat, but just couldn't decide what. Stein, bless his heart, bought 5 different kinds of mac and cheese to see if one would possibly strike my fancy. None did.
Monday I woke up for school and knew that I needed to eat. Again, nothing sounded good. Stein suggested that I take one of the nausea pills (the "light" one). I managed to eat a little toast and got ready for school.
The morning was a blur, and I felt like I could crawl under my desk and fall asleep. (George Costanza had it right, by the way.) Thankfully, my student teacher jumped in and was able to teach the morning lessons. By the afternoon, I was feeling better, and ate a little more. I was also able to teach the rest of the day.
By Monday night, and the rest of the week, I was feeling back to normal. I learned, though, that I think I may need to take the Friday and Monday off when I have chemo. I think my body needs to adjust back to things, and resting and trying to eat will be easier at home than at school. I'm especially thinking about the point when they say the cumulative effects of the chemo will be worse. I hope it's not terrible, but I'm prepared to do whatever I need to do to keep strong and healthy.
Right now I feel like these in-between weeks are time to fatten up for the slaughter. I'm going to take advantage of this time while I have an appetite to eat and enjoy. I gotta make up for those missing beer and wine calories somehow. Ben and Jerry's anyone?
A lot of you have been asking how the chemo went and how I felt afterward. The following is a recap - sorry, it's kinda boring... Friday I felt tired, which I know was mostly due to being done with and exhausted from the stress of chemo day one.
Saturday I felt like a rock star. I woke up and made some toast and smoothies. My mom and I went for a 45 minute walk. I read, did some schoolwork, slept, and ate like a champ. While doing all of this, I knew that Sunday could be totally different. They kept warning me that the steroid would wear off by then.
Sunday, I just felt "off". No nausea, but just not myself. I also had no appetite for anything. I managed to eat a piece of toast for breakfast, some soup for lunch, and finally Sunday night I managed to eat some dinner after eating some Cheez-its (thanks, Anne!). All the while I knew that I needed to eat, but just couldn't decide what. Stein, bless his heart, bought 5 different kinds of mac and cheese to see if one would possibly strike my fancy. None did.
Monday I woke up for school and knew that I needed to eat. Again, nothing sounded good. Stein suggested that I take one of the nausea pills (the "light" one). I managed to eat a little toast and got ready for school.
The morning was a blur, and I felt like I could crawl under my desk and fall asleep. (George Costanza had it right, by the way.) Thankfully, my student teacher jumped in and was able to teach the morning lessons. By the afternoon, I was feeling better, and ate a little more. I was also able to teach the rest of the day.
By Monday night, and the rest of the week, I was feeling back to normal. I learned, though, that I think I may need to take the Friday and Monday off when I have chemo. I think my body needs to adjust back to things, and resting and trying to eat will be easier at home than at school. I'm especially thinking about the point when they say the cumulative effects of the chemo will be worse. I hope it's not terrible, but I'm prepared to do whatever I need to do to keep strong and healthy.
Right now I feel like these in-between weeks are time to fatten up for the slaughter. I'm going to take advantage of this time while I have an appetite to eat and enjoy. I gotta make up for those missing beer and wine calories somehow. Ben and Jerry's anyone?
Tuesday, October 23, 2012
Support from Beyond
I had my last night of parent-teacher conferences tonight. So glad that they're over. It's just one event of many that every teacher checks off the list as September, October, and November whiz by. At this point, I have report cards to write and a couple of other activities to attend to, but the bulk of my "extracurricular" fall events have passed. I'm so glad.
However, one thing I love about conferences is watching the interaction between the parents and their child. I choose to have the students at my conferences because it helps to make everyone present accountable for the goals that are set. It's interesting seeing how near the apple falls from the tree. After conferences, I can understand how the dynamics of the family work, and I have a better idea about how to navigate through this dynamic.
This time it's been interesting how parents have responded to my news. I have been close to tears at a couple conferences because of the kind words of parents. One conference that needed the student as a translator between the mom and me, ended with her saying, "I hope you feel better." Each word was spoken carefully and softly. I turned to my student teacher as they left the room, and said, "Wow. She can barely speak English, yet she felt it so important to say that to me." A little while later, a parent said, "You are in my prayers. You will be okay." Many others said the same thing. With the variety of cultures and nationalities that are represented in my classroom, I am being prayed about in a bunch of different languages to a bunch of different gods. How humbling.
However, one thing I love about conferences is watching the interaction between the parents and their child. I choose to have the students at my conferences because it helps to make everyone present accountable for the goals that are set. It's interesting seeing how near the apple falls from the tree. After conferences, I can understand how the dynamics of the family work, and I have a better idea about how to navigate through this dynamic.
This time it's been interesting how parents have responded to my news. I have been close to tears at a couple conferences because of the kind words of parents. One conference that needed the student as a translator between the mom and me, ended with her saying, "I hope you feel better." Each word was spoken carefully and softly. I turned to my student teacher as they left the room, and said, "Wow. She can barely speak English, yet she felt it so important to say that to me." A little while later, a parent said, "You are in my prayers. You will be okay." Many others said the same thing. With the variety of cultures and nationalities that are represented in my classroom, I am being prayed about in a bunch of different languages to a bunch of different gods. How humbling.
Friday, October 19, 2012
Live from the Cancer Center - It's Chemo Day One!
I intended to write this live from the Cancer Center, but I was a little distracted. Day one down, eleven to go. I'm really glad this is over and done. Now I have a better idea on how the process will typically go. The control freak in me was freaking out with all of the unknowns. What if they can't access my port? What if I get sick in the chair? What if I forget to bring something from home to keep me busy? I always tell my class that they shouldn't ask worrisome, "What if" questions. We can't be bothered by what's to come. Now I was doing just that.
Despite worrying, I did get a decent night's sleep. I woke up and put the Lidocaine on the port so I wouldn't feel it when they accessed it.
We got to the Cancer Center blood-draw lab at 7:45 this morning. (Did I tell you my mom came into town? She came in on Wednesday night, and will probably stay until Tuesday. It's good to have her here.) I gave them my card and then was called in when they called my name. I mentioned that I had a port, and the woman said, "Oh! You have a port? Well, then you need to come over here." She led me to another woman who I assume is the solo "port person" in the lab. This woman asked what type of port I had (the Power Port, of course!) because I guess different ports require different supplies. She accessed the port, no problem, and was able to draw the blood needed for my lab write up.
After that, we had an appointment with the "Skills Lab". There, we met with a nurse who gave us the run-down on what to expect today and in the future, what to do to keep my immune system protected, what I should/shouldn't eat, and what to keep in our house for possible side effects. The nurse was previously a nurse in the infusion center, so she had some great tips and advice. What a great service they provide.
Back to the Cancer Center we went, and checked in to get my infusion. When I was called, they took me back to an alcove-type room where there were 2 chairs for patients. Only one person is allowed to be with me at a time, so Stein came in with me initially, and my mom waited in the waiting room until she switched with Stein later on.
The nurse came in and explained what would be going on today. First I was given a cup of various pills all designed to help with nausea and other effects of the infusion. Then I was given the various chemo that is used for Hodgkin's. We learned something interesting today: chemo is based on your disease, and also your height and weight. There is a formula that is used, and the medicine is made in the pharmacy next to the infusion area on the day that you have the chemo.
One of the medicines (the "B" in my ABVD protocol) makes some people exhibit signs of allergy. Because of this, when it was time to give me that drug, they only gave me a small dose, and then waited an hour to see if I had any effects. I didn't, so they could proceed with the treatment. And now on subsequent visits, I won't have to wait that hour. Hooray! One less hour of my time.
At the end, she flushed the port with saline, "unplugged" the port, and sent me on my way. I got home and slept a little, then felt a little nausea. I have 2 prescriptions that will help with nausea - one that is pretty mild, and another that is the same pill I took when I had the bone marrow biopsy. Obviously, I can take the mild one during the day if I'm at school, but not the other one.
Right now I'm feeling tired, but not too bad, and (knock on wood) no nausea. I'm told that I may feel bad on Sunday when the steroids they gave me begin to wear off. We'll see... I'm also told that chemo has a cumulative effect, where the 3rd or 4th treatment may hit me a lot worse than this one.
So what did I do while I was in the chair for 4.5 hours? I read some magazines, played on the iPad, sent some texts and emails, slept, ate lunch, and people watched. My mind was pretty distracted as I was trying to take everything in, so I didn't do anything for more than about 20 minutes at a time.
I'm not looking forward to the next treatment, but I am relieved to have this first one out of the way and know what to expect now. Next time I think I'll suggest some vodka be added to the chemo cocktail. It may have just-as-good results with relaxing me. After all, alcohol played a big role at the beginning of this process, why not now?
Thank you to everyone for your prayers, words of encouragement, cards, emails, gifts, texts, and food. It makes this whole crazy ride less like Mr. Toad's Wild Ride, and more like (I cringe when I say it) It's a Small World.
Despite worrying, I did get a decent night's sleep. I woke up and put the Lidocaine on the port so I wouldn't feel it when they accessed it.
We got to the Cancer Center blood-draw lab at 7:45 this morning. (Did I tell you my mom came into town? She came in on Wednesday night, and will probably stay until Tuesday. It's good to have her here.) I gave them my card and then was called in when they called my name. I mentioned that I had a port, and the woman said, "Oh! You have a port? Well, then you need to come over here." She led me to another woman who I assume is the solo "port person" in the lab. This woman asked what type of port I had (the Power Port, of course!) because I guess different ports require different supplies. She accessed the port, no problem, and was able to draw the blood needed for my lab write up.
After that, we had an appointment with the "Skills Lab". There, we met with a nurse who gave us the run-down on what to expect today and in the future, what to do to keep my immune system protected, what I should/shouldn't eat, and what to keep in our house for possible side effects. The nurse was previously a nurse in the infusion center, so she had some great tips and advice. What a great service they provide.
Back to the Cancer Center we went, and checked in to get my infusion. When I was called, they took me back to an alcove-type room where there were 2 chairs for patients. Only one person is allowed to be with me at a time, so Stein came in with me initially, and my mom waited in the waiting room until she switched with Stein later on.
The nurse came in and explained what would be going on today. First I was given a cup of various pills all designed to help with nausea and other effects of the infusion. Then I was given the various chemo that is used for Hodgkin's. We learned something interesting today: chemo is based on your disease, and also your height and weight. There is a formula that is used, and the medicine is made in the pharmacy next to the infusion area on the day that you have the chemo.
One of the medicines (the "B" in my ABVD protocol) makes some people exhibit signs of allergy. Because of this, when it was time to give me that drug, they only gave me a small dose, and then waited an hour to see if I had any effects. I didn't, so they could proceed with the treatment. And now on subsequent visits, I won't have to wait that hour. Hooray! One less hour of my time.
At the end, she flushed the port with saline, "unplugged" the port, and sent me on my way. I got home and slept a little, then felt a little nausea. I have 2 prescriptions that will help with nausea - one that is pretty mild, and another that is the same pill I took when I had the bone marrow biopsy. Obviously, I can take the mild one during the day if I'm at school, but not the other one.
Right now I'm feeling tired, but not too bad, and (knock on wood) no nausea. I'm told that I may feel bad on Sunday when the steroids they gave me begin to wear off. We'll see... I'm also told that chemo has a cumulative effect, where the 3rd or 4th treatment may hit me a lot worse than this one.
So what did I do while I was in the chair for 4.5 hours? I read some magazines, played on the iPad, sent some texts and emails, slept, ate lunch, and people watched. My mind was pretty distracted as I was trying to take everything in, so I didn't do anything for more than about 20 minutes at a time.
I'm not looking forward to the next treatment, but I am relieved to have this first one out of the way and know what to expect now. Next time I think I'll suggest some vodka be added to the chemo cocktail. It may have just-as-good results with relaxing me. After all, alcohol played a big role at the beginning of this process, why not now?
Thank you to everyone for your prayers, words of encouragement, cards, emails, gifts, texts, and food. It makes this whole crazy ride less like Mr. Toad's Wild Ride, and more like (I cringe when I say it) It's a Small World.
Monday, October 15, 2012
Out of the Mouths of Babes
So I told my class today. I almost threw up before I was going to tell them. This was one of the hardest things I've done in any aspect of the careers I've had in my life. Speak in front of 100+ people? No sweat. Train employees and open 2 restaurants in a week? Kid's play. Organize a 4-day event with people flying in from all over the world? Piece of cake.
I had them gather on the floor in a circle so I could see all their faces. I told them that I had something to tell them about me. I said I recently found out I have Lymphoma, which is a cancer that is in the Lymphatic System. I talked about Lymph Nodes, etc. I also told them about the chemo I'll be getting and how this will cause me to be at 60-70% of my normal energy level, and I will probably lose my hair. I told them that this form of cancer is very treatable, and I'm hopeful with the outlook.
Some of the questions/comments from the class:
Why don't you just shave your head now and make a wig out of the hair you have now?
Is it contagious?
You should get a wig that looks like your hair now so no one will know.
How did you get it?
Is your hair going to grow back?
What is your energy level at now?
Your hair already looks like it's thinning. (To which I had to tell him that I haven't started the chemo yet).
So you're not going to die?
What are you going to do on "wacky hair day"?
I then sent out an email to the parents. I got a few nice replies, and also at parent/teacher conferences tonight I got a lot of nice comments.
I'm so glad that's over. Now I can breathe easier knowing I'm not keeping a secret of sorts. Now I can start planning what I'm going to do on "wacky hair day".
I had them gather on the floor in a circle so I could see all their faces. I told them that I had something to tell them about me. I said I recently found out I have Lymphoma, which is a cancer that is in the Lymphatic System. I talked about Lymph Nodes, etc. I also told them about the chemo I'll be getting and how this will cause me to be at 60-70% of my normal energy level, and I will probably lose my hair. I told them that this form of cancer is very treatable, and I'm hopeful with the outlook.
Some of the questions/comments from the class:
Why don't you just shave your head now and make a wig out of the hair you have now?
Is it contagious?
You should get a wig that looks like your hair now so no one will know.
How did you get it?
Is your hair going to grow back?
What is your energy level at now?
Your hair already looks like it's thinning. (To which I had to tell him that I haven't started the chemo yet).
So you're not going to die?
What are you going to do on "wacky hair day"?
I then sent out an email to the parents. I got a few nice replies, and also at parent/teacher conferences tonight I got a lot of nice comments.
I'm so glad that's over. Now I can breathe easier knowing I'm not keeping a secret of sorts. Now I can start planning what I'm going to do on "wacky hair day".
Sunday, October 14, 2012
How it All Began
First of all, thank you to all of you who have contacted me in various ways about what's going on. I will try to write back to you, but please be patient. The amount of calls, texts, and emails is humbling and a bit overwhelming. I'm feeling the love, that's for sure!
A lot of you have been asking me how I found out I had Hodgkin's. I'll try to explain it here...
Over a year ago, whenever I would drink alcohol, I would get a pain that started in my shoulder and would radiate down my arm. Of course I consulted Dr. Google, and a lot of the posts that I read were from people who said, "Oh yeah, I had that, and then later I was diagnosed with Lymphoma." I freaked out and went to my doctor, telling her about my "research". She asked if I had any other symptoms (fever, fatigue, night sweats, etc.). I didn't have any symptoms (and still don't), but she had me get a chest x-ray and consulted with an oncologist colleague of hers. The x-ray came back clear, and the colleague said that the pain in my arm wasn't a symptom. I felt comfortable with the results and went on with things.
Over the past year, the pain would be there when I drank alcohol, but the pain and duration would depend on what type of alcohol I drank, and also if I ate before or during drinking. Sometimes I wouldn't have any pain at all.
About a month and 1/2 ago, I was out with friends and the pain came back. This time, however, the pain was localized to my chest. I felt where the pain was, and noticed a bump on my chest. I went to the doctor who ordered an MRI. The MRI showed possible Lymphoma, so I went in for a biopsy. That confirmed the Lymphoma, and also confirmed that it was Hodgkin's.
I'm glad that the tumor in my chest grew outward instead of inward. We were able to catch it early, and without the other symptoms, I would never know that I had it. Catching it early and not having symptoms makes the prognosis even better. I'm thankful for that.
The bottom line? Bottoms up! It may save your life!
A lot of you have been asking me how I found out I had Hodgkin's. I'll try to explain it here...
Over a year ago, whenever I would drink alcohol, I would get a pain that started in my shoulder and would radiate down my arm. Of course I consulted Dr. Google, and a lot of the posts that I read were from people who said, "Oh yeah, I had that, and then later I was diagnosed with Lymphoma." I freaked out and went to my doctor, telling her about my "research". She asked if I had any other symptoms (fever, fatigue, night sweats, etc.). I didn't have any symptoms (and still don't), but she had me get a chest x-ray and consulted with an oncologist colleague of hers. The x-ray came back clear, and the colleague said that the pain in my arm wasn't a symptom. I felt comfortable with the results and went on with things.
Over the past year, the pain would be there when I drank alcohol, but the pain and duration would depend on what type of alcohol I drank, and also if I ate before or during drinking. Sometimes I wouldn't have any pain at all.
About a month and 1/2 ago, I was out with friends and the pain came back. This time, however, the pain was localized to my chest. I felt where the pain was, and noticed a bump on my chest. I went to the doctor who ordered an MRI. The MRI showed possible Lymphoma, so I went in for a biopsy. That confirmed the Lymphoma, and also confirmed that it was Hodgkin's.
I'm glad that the tumor in my chest grew outward instead of inward. We were able to catch it early, and without the other symptoms, I would never know that I had it. Catching it early and not having symptoms makes the prognosis even better. I'm thankful for that.
The bottom line? Bottoms up! It may save your life!
Thursday, October 11, 2012
Accentuate the Positive
Heard some good news today when we met with the doctor. The results of the CT and PET scans showed that the cancer is not lower than my chest, which puts it at Stage II. Because of that, I will only have to go through 12 treatments of chemo instead of the possible 16. Whew! So that knocks 2 months off of what could have been.
I also had my port inserted today. Again down to B1 we went, and I was thinking that it would be in the same place I had my biopsy. I had 2 great nurses help me when I had the biopsy, and I was hoping that I would see them again. Sure enough - I did! They recognized me and doted on me a little. It helped me relax. The IV went in fine (after I drank lots of water last night and psyched myself up this morning), and the procedure went fine, too.
It's a weird thing - that port. It's completely under my skin and has 3 little "bumps" on it that can be located under the skin. Right in the middle of the bumps is where they will aim the injection when they administer the chemo. They also can draw blood from this port. So no pokes for this girl for at least 6 months!
This weekend Chris comes in. I'm looking forward to a "last hurrah" of sorts. Just hanging out and having fun.
I also had my port inserted today. Again down to B1 we went, and I was thinking that it would be in the same place I had my biopsy. I had 2 great nurses help me when I had the biopsy, and I was hoping that I would see them again. Sure enough - I did! They recognized me and doted on me a little. It helped me relax. The IV went in fine (after I drank lots of water last night and psyched myself up this morning), and the procedure went fine, too.
It's a weird thing - that port. It's completely under my skin and has 3 little "bumps" on it that can be located under the skin. Right in the middle of the bumps is where they will aim the injection when they administer the chemo. They also can draw blood from this port. So no pokes for this girl for at least 6 months!
This weekend Chris comes in. I'm looking forward to a "last hurrah" of sorts. Just hanging out and having fun.
Wednesday, October 10, 2012
Testing, Testing
Today I had a series of tests that will help the doctor know what type of and length of treatment he will prescribe. My first test (CT scan) was at 7:30 a.m., but they wanted me there an hour before! By the time my second test (PET scan) was nearly over, I realized that if I was at school, I would've just started teaching. They were able to get me in early to the PET scan, and then we were able to get in early to the pulmonary test. We tried getting in early for the echo-cardiogram, but they were booked. So home we went, to catch up on things and eat something.
Some things I learned today:
1. Contrast liquid, no matter what "flavor" it is, tastes like crap. I had to drink 2 bottles of it before my CT scan. And then another one before the PET scan. When I first started drinking it, I almost started crying because I didn't think I could do it. But I ended up distracting myself while I drank it which seemed to work. Let's just say that because I couldn't eat this morning, and then had that crap in my belly, I was glad there was a bathroom nearby. (TMI - sorry)
2. My faith in the customer service at the hospital has been restored. Every tech or nurse whom I met today was so nice. From the tech who helped me find out where/when my next appointment was in case I needed to keep the IV in (more about that later), to the woman at pulmonary who got me in early, to the tech at cardio who apologized that they couldn't get me in earlier. That's all it takes, people. Just be nice. My fifth graders could give them some lessons.
3. Einstein Bros. Bagels at the hospital rocks! I have to admit, I went in there with my ops hat on, and was ready to do an inspection. The place looked great, and it was well staffed. Hard to believe that people were up in arms when that went in. I guess because it replaced Wendy's, but I'd much rather have an everything bagel with a shmear than a double with cheese. The frosty is debatable, though.
4. The iPad is a godsend. (Thank you Stein!) They have wireless access at the hospital, so we can surf to our heart's desire. It will definitely come in handy when I start chemo and have to be there for 4-5 hours at a time. What a great distraction.
5. I may become a troll by the time this testing stuff is done. Most of the tests were done in B1 in the hospital. Yes, the basement. I'm sure this has to do with the machines and what they emit, etc., but no sunlight. Thankfully, I won't have to be tested too often.
6. Stein is a rockstar. Not that I just learned that today. Since the initial diagnosis, he has been... coordinator of calendars, head chef in the house, making sure I'm comfortable, calling friends and family to keep them updated, my number one cheerleader. Reason #7,241 why I married that man. He was definitely listening at our wedding when the phrase "in sickness and in health" was said.
7. If you ever work in a blood-draw lab, keep your mouth shut when you're attempting to put a needle in. Every time I go to have blood drawn or if they need to start an IV, the tech spends 5 minutes flicking my arm and hand in various areas to locate a vein. Then he/she goes through a series of explanations, apologies, and narrations that are completely unnecessary and frankly freak me out. I can't bear to look at the needle going in, why do you think I would like to hear about it? This morning's attempt consisted of many "I'm so sorry's" and "I'm normally good at this" and "We'll have to abort this one and try again". (I do have another arm, you know.)
Tomorrow, we're back for more fun when they insert my port. Back down to B1, of course. That's in the morning, and then we have an appointment with the doctor when I think he'll prescribe my treatment. I'll be sure to keep y'all posted.
In the meantime, thank you so much for all the support you continue to provide us. It keeps our chins up.
Some things I learned today:
1. Contrast liquid, no matter what "flavor" it is, tastes like crap. I had to drink 2 bottles of it before my CT scan. And then another one before the PET scan. When I first started drinking it, I almost started crying because I didn't think I could do it. But I ended up distracting myself while I drank it which seemed to work. Let's just say that because I couldn't eat this morning, and then had that crap in my belly, I was glad there was a bathroom nearby. (TMI - sorry)
2. My faith in the customer service at the hospital has been restored. Every tech or nurse whom I met today was so nice. From the tech who helped me find out where/when my next appointment was in case I needed to keep the IV in (more about that later), to the woman at pulmonary who got me in early, to the tech at cardio who apologized that they couldn't get me in earlier. That's all it takes, people. Just be nice. My fifth graders could give them some lessons.
3. Einstein Bros. Bagels at the hospital rocks! I have to admit, I went in there with my ops hat on, and was ready to do an inspection. The place looked great, and it was well staffed. Hard to believe that people were up in arms when that went in. I guess because it replaced Wendy's, but I'd much rather have an everything bagel with a shmear than a double with cheese. The frosty is debatable, though.
4. The iPad is a godsend. (Thank you Stein!) They have wireless access at the hospital, so we can surf to our heart's desire. It will definitely come in handy when I start chemo and have to be there for 4-5 hours at a time. What a great distraction.
5. I may become a troll by the time this testing stuff is done. Most of the tests were done in B1 in the hospital. Yes, the basement. I'm sure this has to do with the machines and what they emit, etc., but no sunlight. Thankfully, I won't have to be tested too often.
6. Stein is a rockstar. Not that I just learned that today. Since the initial diagnosis, he has been... coordinator of calendars, head chef in the house, making sure I'm comfortable, calling friends and family to keep them updated, my number one cheerleader. Reason #7,241 why I married that man. He was definitely listening at our wedding when the phrase "in sickness and in health" was said.
7. If you ever work in a blood-draw lab, keep your mouth shut when you're attempting to put a needle in. Every time I go to have blood drawn or if they need to start an IV, the tech spends 5 minutes flicking my arm and hand in various areas to locate a vein. Then he/she goes through a series of explanations, apologies, and narrations that are completely unnecessary and frankly freak me out. I can't bear to look at the needle going in, why do you think I would like to hear about it? This morning's attempt consisted of many "I'm so sorry's" and "I'm normally good at this" and "We'll have to abort this one and try again". (I do have another arm, you know.)
Tomorrow, we're back for more fun when they insert my port. Back down to B1, of course. That's in the morning, and then we have an appointment with the doctor when I think he'll prescribe my treatment. I'll be sure to keep y'all posted.
In the meantime, thank you so much for all the support you continue to provide us. It keeps our chins up.
Friday, October 5, 2012
This Morning
This morning, as part of a battery of tests I need to get before starting chemo, I had a bone marrow biopsy. I cringed when they told me that I needed to have it done. Everyone I've known who had one talked about excruciating pain. Then they said the 5 magic words:
You will be under sedation.
Well, I wouldn't call it sedation. About 2 days ago, the nurse called and said they don't do IV sedation for the biopsy. She would be calling in a prescription for pills to put me to sleep. "I'm prescribing 1-2 pills," she said. "So how many should I take?" "Well," she explained, "I would take 2 but you won't know how you react. It's up to you." Immediately visions of Weekend at Bernie's appeared in my head. Would Stein have to carry me fireman style through the halls of the hospital?
Needless to say, I didn't sleep last night. What if the pills make me sick? What if they don't make me sleep? What if I feel the pain? And on and on. I tried all of my tricks to try to get to sleep. Nothing worked.
This morning, the rule-follower that I am took the 2 tiny pills exactly at 8:00. When we sat down in the waiting room, I said to Stein, "I don't feel anything." Yet when they called me to come into the room, I thought when did I drink 4 beers on an empty stomach this morning? I didn't feel sick, I just felt woozy.
I never did fall asleep, but had an "It's all okay" kind of feeling throughout the procedure. It lasted about 10 minutes, and there were a few pokes and stings, and a lot of pressure. All in all not a bad deal.
I had a taste for toast, so Stein and I stopped at Zingermann's for some bread, and went home to eat breakfast. I pushed the plate next to me on the couch, and took a 2-hour nap.
Right now we're getting ready to go visit friends in Indy and then tailgate at the Purdue/U of M game tomorrow. I'm looking forward to it. Distractions are good.
Up next week? Wednesday and Thursday will be full of tests - EKG, lung test, PET scan, CAT scan, insertion of the port for chemo, etc. Have all my calls forwarded to the U of M Cancer Center. By the way, why is every other building on that campus sporting a name of a donor who gave money to build it? I guess I get it.
You will be under sedation.
Well, I wouldn't call it sedation. About 2 days ago, the nurse called and said they don't do IV sedation for the biopsy. She would be calling in a prescription for pills to put me to sleep. "I'm prescribing 1-2 pills," she said. "So how many should I take?" "Well," she explained, "I would take 2 but you won't know how you react. It's up to you." Immediately visions of Weekend at Bernie's appeared in my head. Would Stein have to carry me fireman style through the halls of the hospital?
Needless to say, I didn't sleep last night. What if the pills make me sick? What if they don't make me sleep? What if I feel the pain? And on and on. I tried all of my tricks to try to get to sleep. Nothing worked.
This morning, the rule-follower that I am took the 2 tiny pills exactly at 8:00. When we sat down in the waiting room, I said to Stein, "I don't feel anything." Yet when they called me to come into the room, I thought when did I drink 4 beers on an empty stomach this morning? I didn't feel sick, I just felt woozy.
I never did fall asleep, but had an "It's all okay" kind of feeling throughout the procedure. It lasted about 10 minutes, and there were a few pokes and stings, and a lot of pressure. All in all not a bad deal.
I had a taste for toast, so Stein and I stopped at Zingermann's for some bread, and went home to eat breakfast. I pushed the plate next to me on the couch, and took a 2-hour nap.
Right now we're getting ready to go visit friends in Indy and then tailgate at the Purdue/U of M game tomorrow. I'm looking forward to it. Distractions are good.
Up next week? Wednesday and Thursday will be full of tests - EKG, lung test, PET scan, CAT scan, insertion of the port for chemo, etc. Have all my calls forwarded to the U of M Cancer Center. By the way, why is every other building on that campus sporting a name of a donor who gave money to build it? I guess I get it.
Thursday, October 4, 2012
Thank you.
Wow. What a long, strange trip it's been. And it's only been about 2 weeks. But during those 2 weeks? Well, a whole lot of crap has been thrown our way. Worse than catching that crap has been having to inform our loved ones that this is going on. Believe me, the emotions of it all will always be the hard part for me. I know I haven't physically gone through the worst of it yet, but emotionally it's already begun.
I told Stein that at the beginning of this that we need to find the humor in it all. Everything from being bewildered that the diagnosis came from a receptionist who could give us no other information other than "an oncologist will contact you" to a woman at guest "services" at the hospital who was more consumed with her time-off schedule rather than help us find where we needed to go, to the multiple conflicting messages left on three different phone options (yes, we still have a land line) to schedule us for various procedures. Through that all, we have had time to laugh and continue to laugh. We need to. It could be so much worse. Honestly. I've said this to all of you - while it sucks, there's a light at the end of the tunnel.
So, thank you. Thank you for all your thoughts, prayers, texts, phone calls, gifts, and emails. We're humbled by your care and support.
I told Stein that at the beginning of this that we need to find the humor in it all. Everything from being bewildered that the diagnosis came from a receptionist who could give us no other information other than "an oncologist will contact you" to a woman at guest "services" at the hospital who was more consumed with her time-off schedule rather than help us find where we needed to go, to the multiple conflicting messages left on three different phone options (yes, we still have a land line) to schedule us for various procedures. Through that all, we have had time to laugh and continue to laugh. We need to. It could be so much worse. Honestly. I've said this to all of you - while it sucks, there's a light at the end of the tunnel.
So, thank you. Thank you for all your thoughts, prayers, texts, phone calls, gifts, and emails. We're humbled by your care and support.
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