"It takes a village to raise a child." When you have cancer, going the journey alone is heartbreaking but going the journey surrounded by family and friends makes it not only doable but comforting.
These are the incredible ways my village took care of me. I will forever be in their debt.
1. Cards, emails, texts, visits--I have had or will have a surgery, months of chemo, two consults at cancer centers far from our home, and one more aggressive surgery. People have continued to reach out via the internet, personal visits, and mail. Many have reached out long past my first surgery. Thank you for keeping me all these months in your prayers and thoughts.
2. To my coworkers, who also happen to be my very dear friends, had my house cleaned for me on several occasions. It was so wonderful to come from the hospital and not be looking at dust bunnies that I could not deal with. What a great gift.
3. To my favorite school--I may have left to take a new job but I continue to be part of them. They have (with my church family) fed my family for the entire first month as my family moved from shock to acceptance to determination. Meals were not our priority. Who knows what we would have eaten? Also, for all the visits, the gift card, the hugging (we are a big huggy group), the well wishes, the prayers, the phone calls. Just writing this and thinking of these people turns me into sappy, weepy fool.
4. To my other family, another big huggy bunch--my church family, who also helped with a month of meals. They have sent card after card, week after week. Our pastor dropped everything the minute I found out I had a significant cancer marker and ran to be with me so I wasn't absorbing the news alone.
5. To my boss, also a great friend, who stayed with me through those first horrible phone calls that moved me from surgery patient to cancer patient and wouldn't leave me alone. And then accompanied me to my doctor's appointment so I wouldn't be alone. What a gift, I am forever in her debt.
8. To my friends--they have done amazing things. Not only did they bring meals to our house for an entire month but they have constantly been checking on me months down the road. One friend has been over every day or every other day to walk our dogs with me. One day, when I wasn't strong enough and neither of my children were there to walk my dog, she walked her dog and my dog as well. When I got to skinny to wear my own clothes, she went out and bought two outfits that were soft and small enough for me to wear.
6. To my husband, who stayed with me through every procedure I had that long first week in the hospital. It was like having my own personal nurse. He caught every rise in temperature, every bout of discomfort, and every need that I had and got someone to address it with lightening speed.
7. My family. In February of this year, I lived alone (my kids are grown and my husband works out of town). Since that time, I have had a least two family members living with me at anytime. What can you say to people who got the call, didn't even stop and think twice but gave up their lives to spend weeks with me? My mother has been with me since my first surgery which has been months now and refuses to leave until I get a clean bill of health. My daughter, a college students, gave up her academic life for weeks at a time. My son, also a college student, tagged team his time with his sister. My father and sister both have been here. My sister took over cooking, cleaning, and household management for a month at a time when Mom, Dad, and I were exhausted. My father will also stay till I am fully healthy.
Monday, June 13, 2011
Monday, May 2, 2011
What is a PET/CT scan?
Let me walk you through my experience. Now my experience may differ from others but at least you'll know what one person experienced.
These were my fears going in:
1. I would be claustrophobic and have a panic attack.
2. I would have a reaction to the radiation or the iodine.
3. I would throw up or have diarrhea afterwards.
The first thing I had to do was drink about a pint of barium. It was flavored. Mine was banana smoothie. Don't fool yourself it is not a smoothie. It doesn't taste bad but it is not something you will be craving the next day.
The next thing for me was starting an IV line. I've had so many of those that this is no big deal for me. I had an infusion of radiation. That went really fast. It was done before I knew it.
After that, I had to sit still for 45 minutes. Really still--no music, no TV, no book, no texting, no moving. I don't sleep on command so this was a loooong 45 minutes for me.
Next. I faced the machine. First, I had the PET scan. It involved laying on a conveyor belt that moves you through the machine. You lay still with your hands over your head. Your legs rest on an elevated pillow. The belt is comfortable. I was afraid my arms would go to sleep but they didn't. The machine is like a huge donut. The belt pulls you in and out of the machine. My body was never completely inside the donut and my head was out most of the time so I never felt claustrophobic. It lasted about 20 minutes.
Finally, it was time for the CT scan. Same machine--only 5 minutes. They wanted me to drink some more barium since most of it had moved to my lower intestinal track. They wanted me to drink it laying down but I was not sure I could do that. They didn't want me to sit up and have a different position for the PET scan. I just skipped that second barium drink. The CT scan is only 5 minutes but they flush a dose of iodine into you during the procedure. It feels like a rush of warmth from your head down to your pelvic area. In fact, you have the sense that you just urinated. Don't worry, you didn't.
Then you are done. I was there a total of an hour and half. I had planned to go back to work but as I ate lunch I had a few bathroom issues (not bad just a nuisance). So I went home and slept all afternoon. Not sure why I slept all afternoon but that's what I did.
These were my fears going in:
1. I would be claustrophobic and have a panic attack.
2. I would have a reaction to the radiation or the iodine.
3. I would throw up or have diarrhea afterwards.
The first thing I had to do was drink about a pint of barium. It was flavored. Mine was banana smoothie. Don't fool yourself it is not a smoothie. It doesn't taste bad but it is not something you will be craving the next day.
The next thing for me was starting an IV line. I've had so many of those that this is no big deal for me. I had an infusion of radiation. That went really fast. It was done before I knew it.
After that, I had to sit still for 45 minutes. Really still--no music, no TV, no book, no texting, no moving. I don't sleep on command so this was a loooong 45 minutes for me.
Next. I faced the machine. First, I had the PET scan. It involved laying on a conveyor belt that moves you through the machine. You lay still with your hands over your head. Your legs rest on an elevated pillow. The belt is comfortable. I was afraid my arms would go to sleep but they didn't. The machine is like a huge donut. The belt pulls you in and out of the machine. My body was never completely inside the donut and my head was out most of the time so I never felt claustrophobic. It lasted about 20 minutes.
Finally, it was time for the CT scan. Same machine--only 5 minutes. They wanted me to drink some more barium since most of it had moved to my lower intestinal track. They wanted me to drink it laying down but I was not sure I could do that. They didn't want me to sit up and have a different position for the PET scan. I just skipped that second barium drink. The CT scan is only 5 minutes but they flush a dose of iodine into you during the procedure. It feels like a rush of warmth from your head down to your pelvic area. In fact, you have the sense that you just urinated. Don't worry, you didn't.
Then you are done. I was there a total of an hour and half. I had planned to go back to work but as I ate lunch I had a few bathroom issues (not bad just a nuisance). So I went home and slept all afternoon. Not sure why I slept all afternoon but that's what I did.
Sunday, April 10, 2011
A Chemo Trip
Day 1:
The first day for me looks like this. I spend four hours hooked up to several different IVs. Then I get a push, a small cylinder of my second chemo. The rest of my chemo is given to me in a pump. The pump is the size of a small fanny pack which I wear home for two days. The only symptoms I have had on the first day is my body is sensitive to cold. I have to run sink water for several minutes before I wash my hands. Before I touch anything in the refrigerator, I put on gloves. I eat nothing frozen. This is the first symptom to appear and it starts to disappear the second day. The other symptom that appears the first day is my mouth feels thick. Swallowing is a little hard. I have found that a salt water rinse is very helpful. This lasts a little longer than the sensitivity to cold. The rest of my day goes pretty well. I was able to do a small amount of activity.
Day 2
Tired, sleep a lot but had some wakeful times, too. Can't take a shower with a pump so had my son wash my hair. I bet he never thought he would one day wash his mom's hair. Cold sensation continues. Mouth continues to feel fuzzy. I also found, which I haven't seen listed any where, that my jaw is very sore the first few times I bite into something. (Kind of like TMJ) but then after a few bites all is well. But those first few bites are touch.
Day 3
Back to oncologist to have pump remove and visit with doctor. Does not hurt to have pump remove. I have not actually looked at what the needle looks like that goes in and out of the port (don't care to). Had a coworker stop by with dinner. I don't think she had left the driveway when I began to feel nauseous, grabbed a nausea pill, screamed for my son to bring me a bucket, and of course needed the bucket. Thank goodness that I didn't say to my coworker thanks for dinner and pass the bucket!
Day 4
Day 4 and 5 are usually my bad days. Last chemo, they were so bad that I layed flat for these two days. This time I asked the doctor for some painkillers. Have been taking percocet and the pain is almost nonexistent. I sure don't recomment toughing it out. This time has been so much more doable. Was able to walk my neighbourhood which felt great.
Day 5
Up and down day--able to do a few short walks but then slept the afternoon. Still some cold issues and jaw issues. Continue to take painkillers to help alleviate pain, very helpful.
The first day for me looks like this. I spend four hours hooked up to several different IVs. Then I get a push, a small cylinder of my second chemo. The rest of my chemo is given to me in a pump. The pump is the size of a small fanny pack which I wear home for two days. The only symptoms I have had on the first day is my body is sensitive to cold. I have to run sink water for several minutes before I wash my hands. Before I touch anything in the refrigerator, I put on gloves. I eat nothing frozen. This is the first symptom to appear and it starts to disappear the second day. The other symptom that appears the first day is my mouth feels thick. Swallowing is a little hard. I have found that a salt water rinse is very helpful. This lasts a little longer than the sensitivity to cold. The rest of my day goes pretty well. I was able to do a small amount of activity.
Day 2
Tired, sleep a lot but had some wakeful times, too. Can't take a shower with a pump so had my son wash my hair. I bet he never thought he would one day wash his mom's hair. Cold sensation continues. Mouth continues to feel fuzzy. I also found, which I haven't seen listed any where, that my jaw is very sore the first few times I bite into something. (Kind of like TMJ) but then after a few bites all is well. But those first few bites are touch.
Day 3
Back to oncologist to have pump remove and visit with doctor. Does not hurt to have pump remove. I have not actually looked at what the needle looks like that goes in and out of the port (don't care to). Had a coworker stop by with dinner. I don't think she had left the driveway when I began to feel nauseous, grabbed a nausea pill, screamed for my son to bring me a bucket, and of course needed the bucket. Thank goodness that I didn't say to my coworker thanks for dinner and pass the bucket!
Day 4
Day 4 and 5 are usually my bad days. Last chemo, they were so bad that I layed flat for these two days. This time I asked the doctor for some painkillers. Have been taking percocet and the pain is almost nonexistent. I sure don't recomment toughing it out. This time has been so much more doable. Was able to walk my neighbourhood which felt great.
Day 5
Up and down day--able to do a few short walks but then slept the afternoon. Still some cold issues and jaw issues. Continue to take painkillers to help alleviate pain, very helpful.
Thursday, April 7, 2011
What Chemo is like?
The first thing I discovered was not all chemo treatments are the same. Each one is matched to the type of cancer you have. I have colon cancer. My chemo does not affect my hair. I also take a pump home that pumps one of my chemos into me over the course of two days.
Things to know before you go-
1, This was big for me--you can go to the bathroom during chemo. My chemo came almost a week after my surgery and I was in the bathroom 6 times the first treatment.
2, You can eat, drink, read, watch TV. Where I have treatments, there are several TVs but they are muted. I preferred to bring my computer and watch DVDs. Some people sleep. Some bring their computers and do work. Some read. I am there 4 hours so DVDs really pass the time.
3. I had a port put in prior to my first treatment. I had expected that it would be a simple procedure. It was simple but it was a surgical procedure and I was taken to an operating room and put to sleep. I woke up in recovery and then back to my prep room. It took less than an hour but it was a surgical procedure.
4. During chemo when they actually attach the tubing to the port, they both swab the sight and spray a dumbing solution on it. One time I felt pressure but the other times I hardly felt a thing.
5. The first thing that happens is they draw blood and check your blood work. Often, I had some low scores come back. We did find when I took vitamins and ate a lot of spinach my hemoglobin and red blood count stayed where it should.
6. My chemo room is exactly that one big room. In the middle is a rectangular nurses' station. Around the nurses station are many recliners. lined up next to the nurses station as well as around the perimeter of the room. You sit in a recliner and there are IV racks with every chair. The racks list how much time before you are done. The racks have a battery backup so when you do need to go to the bathroom you just unplug the rack and take the rack with you.
7. I found that the nurses that chose to work with chemo patients have been very helpful, upbeat, and really concerned to help make your chemo go as smoothly as possible.
Things to know before you go-
1, This was big for me--you can go to the bathroom during chemo. My chemo came almost a week after my surgery and I was in the bathroom 6 times the first treatment.
2, You can eat, drink, read, watch TV. Where I have treatments, there are several TVs but they are muted. I preferred to bring my computer and watch DVDs. Some people sleep. Some bring their computers and do work. Some read. I am there 4 hours so DVDs really pass the time.
3. I had a port put in prior to my first treatment. I had expected that it would be a simple procedure. It was simple but it was a surgical procedure and I was taken to an operating room and put to sleep. I woke up in recovery and then back to my prep room. It took less than an hour but it was a surgical procedure.
4. During chemo when they actually attach the tubing to the port, they both swab the sight and spray a dumbing solution on it. One time I felt pressure but the other times I hardly felt a thing.
5. The first thing that happens is they draw blood and check your blood work. Often, I had some low scores come back. We did find when I took vitamins and ate a lot of spinach my hemoglobin and red blood count stayed where it should.
6. My chemo room is exactly that one big room. In the middle is a rectangular nurses' station. Around the nurses station are many recliners. lined up next to the nurses station as well as around the perimeter of the room. You sit in a recliner and there are IV racks with every chair. The racks list how much time before you are done. The racks have a battery backup so when you do need to go to the bathroom you just unplug the rack and take the rack with you.
7. I found that the nurses that chose to work with chemo patients have been very helpful, upbeat, and really concerned to help make your chemo go as smoothly as possible.
Friday, April 1, 2011
What to say to a friend who has cancer
1. Only positive things--It is easy to get sucked into cancer stories. Think ahead because not every cancer story has a happy ending.
2. In the beginning your friend will want to talk, tell her story. She needs to tell her story many times before it becomes real. Just listen. Later, she needs to hear about the outside world. Her world has shrunk to her chair, her bed, and the TV. Tell her stories about work, church, people you know. Bring the world to her.
3. Lots of people come the first 2 weeks but cancer is long and she needs visitors as time goes by. Having friends stop once or twice a week to chat will be so appreciative.
4. Everyone is interested in the Staging Number. Don't ask--if it's not a low number your friend doesn't need to dwell on it. If it is a low number, she'll tell you. One thing I know is many people beat cancer even with a Staging Number of 3 or 4.
5. What to do for your friend? I got flowers--loved them. Lots of cards--very appreciative, especially those that came as time went on. I have several friends that send a card once a week. I have gotten cards from people who I had no idea that I touched them so much. One person has bought me outfits. I have a large scar line and am uncomfortable in my jeans. So my friend went to Walmart and bought several elastic waist band, soft pants with matching tops. Makes me feel good to have something new to wear. My coworkers got together and paid for two maid service. It was so wonderful to come home from the hospital to a clean house and not spend my time looking at dust bunnies. My best friend comes over every other day so we can walk. And food--for a solid month someone from either my work or church brought dinner. They used a website called Mealtrain--very user friendly.
6. Everyone says "if you need anything, just let me know". Don't say this if you have the kind of schedule where you really don't have extra time to help your friend. It's very awkward if you say this and then when your friend asks for a favor you can't do it. This may keep her from reaching out to someone else if she has one bad experience asking for a favor from you.
2. In the beginning your friend will want to talk, tell her story. She needs to tell her story many times before it becomes real. Just listen. Later, she needs to hear about the outside world. Her world has shrunk to her chair, her bed, and the TV. Tell her stories about work, church, people you know. Bring the world to her.
3. Lots of people come the first 2 weeks but cancer is long and she needs visitors as time goes by. Having friends stop once or twice a week to chat will be so appreciative.
4. Everyone is interested in the Staging Number. Don't ask--if it's not a low number your friend doesn't need to dwell on it. If it is a low number, she'll tell you. One thing I know is many people beat cancer even with a Staging Number of 3 or 4.
5. What to do for your friend? I got flowers--loved them. Lots of cards--very appreciative, especially those that came as time went on. I have several friends that send a card once a week. I have gotten cards from people who I had no idea that I touched them so much. One person has bought me outfits. I have a large scar line and am uncomfortable in my jeans. So my friend went to Walmart and bought several elastic waist band, soft pants with matching tops. Makes me feel good to have something new to wear. My coworkers got together and paid for two maid service. It was so wonderful to come home from the hospital to a clean house and not spend my time looking at dust bunnies. My best friend comes over every other day so we can walk. And food--for a solid month someone from either my work or church brought dinner. They used a website called Mealtrain--very user friendly.
6. Everyone says "if you need anything, just let me know". Don't say this if you have the kind of schedule where you really don't have extra time to help your friend. It's very awkward if you say this and then when your friend asks for a favor you can't do it. This may keep her from reaching out to someone else if she has one bad experience asking for a favor from you.
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