The hair is gone. I can't say that I'm completely bald, because I had my head shaved and there's still some stubble, but, for all intents and purposes, I'm bald.
Last time around, losing my hair was so traumatic that I let most of it fall out on its own. It wasn't until I had one little section about an inch wide before I let Mom cut off that last bit. Looking back, I realize just what a mess it was. My hair would come out in handfuls-- I didn't need a comb or a brush, just touching my head was enough to cause it to fall out. By the time it was fully gone, I was so sick I couldn't have cared less about being bald. This time around, I decided that I didn't want to deal with the mess. I would rather have more control over the whole process.
I bought a wig two weeks ago. Basically, it's the same hairstyle I've worn for years. It's a little longer and a little grayer (or blonder) because it's got streaks and the light color is sufficiently vague that it could be seen as either blonde or gray. It's also different in that the cut is a bit asymmetrical-- one side is slightly longer than the other. Until yesterday, it's just sat on the styrofoam head.
My head started itching on Tuesday and hair started coming out a few strands at a time on Tuesday. It wasn't enough to be really noticeable, but it was more than I normally see when I comb my hair. By Wednesday, it was starting to bother me and I made an appointment with my neighbor (who is also my hairdresser), but it wasn't until Friday. She teaches at a beauty school most days and generally only works in her basement salon on Saturdays. As a special favor, she let me come on Friday at 6 p.m.
Mom, Mari and Kathy (another neighbor) came to view the proceedings. Jen shaved it all off, but didn't want to use a razor to remove the stubble because she was afraid she might nick me-- and I can't afford an infection. My friend, Paula, who had breast cancer two years ago, said that she used an electric razor (like a man's razor) and shaved the stubble from her own head. In her experience, when the stubble falls out, it gets on your pillow and under your clothes and feels about like hay stubble-- it pokes at you and can be quite uncomfortable. I can see the rationale, but, for now, will live with the stubble.
When I got up from the chair, Mom popped up and said, "It's my turn"-- and she got her head shaved too. She has thin, fine hair that she finds hard to deal with. It's redeeming value is that, despite being 78 years old, she has only a strand or two of gray and has never needed to touch it up to retain its natural dark brown. Mari knew that Mom planned to shave her head too, but I don't even think Dad knew she was going to do it-- I certainly didn't. It was also an amazing show of support!
Mom didn't plan to buy a wig; she figured she would just wear hats. There was NO WAY I was going to let than happen-- so we went wig shopping for her yesterday. We found one that we both liked, but it was an interesting day at the shop. Between a cross-dressing man who bought 3 wigs for himself, another guy who was looking for a wig that looked like his natural hair so that he could grow his own long and then cover it up with the wig so that people (work, school, parents?) wouldn't be able to tell, and a lady who is being treated for a tumor and is about to lose her hair and the regular walk-ins, it was an educational (cultural?) experience.
What a day! By the time we were finished there, my energy level was totally shot. I hung on to finish the things on our list, but it was a hard push.
So, now both Mom and I are bald at home, but wear wigs or other cover-ups when we're out in public. I plan to post pictures, but we don't have pictures of us in our wigs yet. So keep looking. To be truthful, I'm not very attractive as a bald person; Mom looks much better than I do.
Superheroes cannot control what life throws at them, but they aren't afraid to take control of what they do with it. In my case, my hair was going whether I liked it or not. In both the past and my current circumstances, I chose how to respond. This time around I opted for control-- I decided that it was better to just shave my head and be done with it, rather than let it go piece by piece. It was a more dramatic choice, but I was ready to take control. Mom didn't have to shave her head, in her case, it was strictly by choice-- but the support was greatly appreciated, and she looks good in her wig.
Sunday, October 25, 2009
Catching up-- Part Two (the effects)
Wow! The coping medicines are amazing!!
When I go into the office for treatment, they start me out with a IV version of Emend, which is the high-powered drug to combat nausea. Then I follow up with a pill version of the medicine, one pill per day for the two days following treatment. It can be taken without food, which is a good thing because sometimes my stomach is on the verge of being queasy when I first wake up.
In the office, I am also given a drug called "Neulasta" which stimulates white blood cell production. That's a good thing, because I still go out in public and run the risk of exposure to flu or other sickness. I'm grateful to have those white blood cells to combat infection-- particularly since I had a fever last week, so my body was obviously fighting something.
Dr. Litton sent me home with a list informing me what my chemotherapy regimen is called, what chemo medicines I'm currently receiving, and listing all of the (initial) drugs, both prescribed and over-the-counter, that I would or could be taking. Some of the drugs are to combat nausea, like the Emend, Decadron and Compazine. Some can be generic versions of the medicines, others have to be the name brand.
Some of the meds are for situational use. With the Neulasta, there is the possibility of bone pain in the large bones (like leg bones) and for some strange, unexplainable reason, Claritin which is generally used for allergies, helps to alleviate the pain. Other potential side effects are constipation or diarrhea or mouth sores-- but I've had no real problems with any of them. If I did, there were over-the-counter solutions for them. One of the prescriptions that they wanted me to have on hand was for Levaquin, in case I got a fever of over 100.4.
About 7 days after my initial treatment, I found that I did have a fever that hit that numeric threshold. My instructions were before taking the medication, I was to call the doctor or on-call physician before taking the pills. I called and they told me to start taking the meds.
It should be mentioned, how very grateful I was that Dr. Litton had gone over the prescriptions in his office when he first gave them to me. When I took the 5 prescriptions to be filled, the pharmacy failed to include the instruction to call the doctor before taking the Levaquin. When I got home and reviewed the pill bottles, I didn't find that particular instruction on any of them. Fortunately, I thought I remembered that it was the Levaquin, but I had to call the pharmacy to verify that it was that particular drug that had the added instructions, which I then proceeded to write on the bottle myself.
I was also thankful that on the day of my first treatment, the doctor gave me the list that had all of the instructions in one place.
In terms of how I feel, things are pretty good. The instructions are to take the meds whether I feel nauseated or not-- its better to be proactive rather than try to treat it once you really feel awful. I've felt a little queasy upon occasion, but with a little compazine, it's not been particularly bad. I've been able to eat regular meals, but I should admit that my palate is kind of fickle. The past few days the thought of eating meat or casseroles isn't particularly pleasing-- I want fruit, preferably in milkshake or smoothie form. Bread and toast are pretty safe, as a yoghurt and cottage cheese, but the milk products can be iffy.
The biggest challenge has still been pain. I've always associated it with the tissue expander, but one of my friends said that she just couldn't ever move her arm because of the pain. So maybe it's just part of the healing process from the surgery. I've been taking Alleve and an anti-anxiety drug which helps to extend the effects of the Alleve, but it just wasn't working. It's been good having Mari here, because she just insisted that there was no excuse for the pain. She was actually kind of upset that I didn't ask for pain meds when I called about the Levaquin. With the pain, I couldn't sleep at night, it hurt during the day, but since I wasn't feeling completely debilitated, I thought I just had to live with it. Now that I've been given pain med, I cannot believe the difference that it makes. Even though I'm allowed to take it every 4-6 hours, I only take it twice a day-- that's enough to keep me going.
Since I wasn't sleeping, Friday they also gave me a prescription for Ambien. I was definitely given the caveat to make sure to take it with enough time so that I could get 8 hours of sleep. I took the pain med first on Friday and then took the Ambien just before bed. Almost immediately I felt like a zombie. I was able to sleep, but was still able to wake up to use the bathroom. The problem, however, was that I didn't feel very steady on my feet. As a matter of fact, it kind of scared me-- I was afraid I would fall. The pain med was enough so that I could find a comfortable position to sleep, so I've decided to take the Ambien only as a last resort. It was just a little too much.
But, let me tell you, I woke up on Saturday morning and felt fully alive!!! I was amazed at how good I felt! I don't know if it was lack of pain or just a good night's sleep, but I felt great! I felt so good that I kind of pushed my activities for the day. I actually ran out of steam about 4 hours after getting up, but because we hadn't finished my/our list for the day, I kept going for another 4-5 hours. It was too much.
Superheroes listen and heed the advice of those who have the knowledge and experience to help them through difficult situations. They are humble enough to admit that they don't know everything. The big lesson, however, is to ask questions. I don't seem to be the only person to know that we don't always have to suffer through situations. Mari was here to say, "this isn't necessary"-- and I needed to know that. I was doing the best I could, based on the paper I had been given, but the paper didn't really say anything about dealing with pain. I guess the doctors expected me to let them know that I wasn't doing well and I thought that the pain threshold was too low to ask about it. I guess I forgot that when I was in the hospital, they told me on a scale of 1-10 (ten being the highest), I should aim for 2-3. I was probably experiencing 5 on that scale. It wasn't enough to completely stop me, but it was a constant presence. Until I changed how it was being treated, I really had no understanding as to how limited I was feeling and acting. I am so very thankful to have learned this lesson and to have had someone here to teach it to me!
When I go into the office for treatment, they start me out with a IV version of Emend, which is the high-powered drug to combat nausea. Then I follow up with a pill version of the medicine, one pill per day for the two days following treatment. It can be taken without food, which is a good thing because sometimes my stomach is on the verge of being queasy when I first wake up.
In the office, I am also given a drug called "Neulasta" which stimulates white blood cell production. That's a good thing, because I still go out in public and run the risk of exposure to flu or other sickness. I'm grateful to have those white blood cells to combat infection-- particularly since I had a fever last week, so my body was obviously fighting something.
Dr. Litton sent me home with a list informing me what my chemotherapy regimen is called, what chemo medicines I'm currently receiving, and listing all of the (initial) drugs, both prescribed and over-the-counter, that I would or could be taking. Some of the drugs are to combat nausea, like the Emend, Decadron and Compazine. Some can be generic versions of the medicines, others have to be the name brand.
Some of the meds are for situational use. With the Neulasta, there is the possibility of bone pain in the large bones (like leg bones) and for some strange, unexplainable reason, Claritin which is generally used for allergies, helps to alleviate the pain. Other potential side effects are constipation or diarrhea or mouth sores-- but I've had no real problems with any of them. If I did, there were over-the-counter solutions for them. One of the prescriptions that they wanted me to have on hand was for Levaquin, in case I got a fever of over 100.4.
About 7 days after my initial treatment, I found that I did have a fever that hit that numeric threshold. My instructions were before taking the medication, I was to call the doctor or on-call physician before taking the pills. I called and they told me to start taking the meds.
It should be mentioned, how very grateful I was that Dr. Litton had gone over the prescriptions in his office when he first gave them to me. When I took the 5 prescriptions to be filled, the pharmacy failed to include the instruction to call the doctor before taking the Levaquin. When I got home and reviewed the pill bottles, I didn't find that particular instruction on any of them. Fortunately, I thought I remembered that it was the Levaquin, but I had to call the pharmacy to verify that it was that particular drug that had the added instructions, which I then proceeded to write on the bottle myself.
I was also thankful that on the day of my first treatment, the doctor gave me the list that had all of the instructions in one place.
In terms of how I feel, things are pretty good. The instructions are to take the meds whether I feel nauseated or not-- its better to be proactive rather than try to treat it once you really feel awful. I've felt a little queasy upon occasion, but with a little compazine, it's not been particularly bad. I've been able to eat regular meals, but I should admit that my palate is kind of fickle. The past few days the thought of eating meat or casseroles isn't particularly pleasing-- I want fruit, preferably in milkshake or smoothie form. Bread and toast are pretty safe, as a yoghurt and cottage cheese, but the milk products can be iffy.
The biggest challenge has still been pain. I've always associated it with the tissue expander, but one of my friends said that she just couldn't ever move her arm because of the pain. So maybe it's just part of the healing process from the surgery. I've been taking Alleve and an anti-anxiety drug which helps to extend the effects of the Alleve, but it just wasn't working. It's been good having Mari here, because she just insisted that there was no excuse for the pain. She was actually kind of upset that I didn't ask for pain meds when I called about the Levaquin. With the pain, I couldn't sleep at night, it hurt during the day, but since I wasn't feeling completely debilitated, I thought I just had to live with it. Now that I've been given pain med, I cannot believe the difference that it makes. Even though I'm allowed to take it every 4-6 hours, I only take it twice a day-- that's enough to keep me going.
Since I wasn't sleeping, Friday they also gave me a prescription for Ambien. I was definitely given the caveat to make sure to take it with enough time so that I could get 8 hours of sleep. I took the pain med first on Friday and then took the Ambien just before bed. Almost immediately I felt like a zombie. I was able to sleep, but was still able to wake up to use the bathroom. The problem, however, was that I didn't feel very steady on my feet. As a matter of fact, it kind of scared me-- I was afraid I would fall. The pain med was enough so that I could find a comfortable position to sleep, so I've decided to take the Ambien only as a last resort. It was just a little too much.
But, let me tell you, I woke up on Saturday morning and felt fully alive!!! I was amazed at how good I felt! I don't know if it was lack of pain or just a good night's sleep, but I felt great! I felt so good that I kind of pushed my activities for the day. I actually ran out of steam about 4 hours after getting up, but because we hadn't finished my/our list for the day, I kept going for another 4-5 hours. It was too much.
Superheroes listen and heed the advice of those who have the knowledge and experience to help them through difficult situations. They are humble enough to admit that they don't know everything. The big lesson, however, is to ask questions. I don't seem to be the only person to know that we don't always have to suffer through situations. Mari was here to say, "this isn't necessary"-- and I needed to know that. I was doing the best I could, based on the paper I had been given, but the paper didn't really say anything about dealing with pain. I guess the doctors expected me to let them know that I wasn't doing well and I thought that the pain threshold was too low to ask about it. I guess I forgot that when I was in the hospital, they told me on a scale of 1-10 (ten being the highest), I should aim for 2-3. I was probably experiencing 5 on that scale. It wasn't enough to completely stop me, but it was a constant presence. Until I changed how it was being treated, I really had no understanding as to how limited I was feeling and acting. I am so very thankful to have learned this lesson and to have had someone here to teach it to me!
Catching up-- part 1
I now have two chemotherapy treatments under my belt. The first was October 9th and the second was this past Friday, the 23rd.
My how things have changed in the past 23 years!! It's still personal treatment, but it's much more like going to the hair salon.
I had such an aggressive cancer last time around that my treatment was also aggressive. The drug regimen is still the preferred treatment today. The difference is that the coping drugs to combat the nausea didn't exist back then. I had the option of being treated in the hospital as an in-patient. Since Mari (my sister) is a nurse and we were staying with friends where the wife was an ER nurse with a masters' degree in nursing, we all were comfortable with the care I would be receiving outside of his office. So, I went to his office for chemo.
Perhaps I should also say that Dr. Johnson had been the head of the Gynecological Oncology Department at the University of Utah Medical School and had only been in private practice for a couple of years. He was very good at his job and extremely personable.
When I arrived at his office, he was the one who poked me to get the IV set up-- but it was a kind of needle that I would keep for the first 8 days of treatment. Now they do a "pic" line inserted near the clavicle, but then it was on the inside of my wrist. That made it awkward, particularly since I'm right-handed and the needle was always in the right wrist. Mari would have to clear it every evening with Heparin to make sure that it wouldn't clot over-- and that stung!
At the beginning of the week, it might take 4-6 hours before I was able to leave the office. But, as treatment continued, my veins would get tired, so that by the end of the week and with each successive round of treatment, I was often in the office 8-9 hours. Dr. Johnson didn't stay by my side that entire time, Mari was there-- but he popped in off and on to check up on me, often between seeing other patients. For the most part, I was the only patient in the treatment room.
Now, it truly is like going to a beauty salon. First the nurse takes me to a regular consultation room where she does the check-in routine-- taking my blood pressure, temperature, weight, etc. Then I either meet with the doctor himself or with the physician's assistant (they alternate visits). They take care of any changes in treatment. This week, he added a new drug for pain-control (the Alleve wasn't working very well) and prescribed something to help me sleep (more on those later).
From there, I got to the treatment room, a large room with probably 12-15 "stations." Each is set up with a recliner, a comfortable chair for a companion, and the pumps, etc. from which the solution bags for the IV can be hung and cabinets with supplies between two stations. At that point, the nurses take over.
Mari was surprised to see that the needles they use for the IV are the smallest ones they make-- they are the size used on the babies in newborn intensive care. Actually, she was also surprised that they were able to pump the medicines (from the IV bags) into my body so fast using such small needles. All I have to say, is that, with such a small needle, I hardly feel the poke. I am so very grateful because, as much as I try to suppress it, I have a little tendency to jump if I can feel myself getting poked-- and it's worse if it hurts!
There have probably been 6-8 nurses there when I have had treatment, although it looks like the room has workstations for 10 nurses or so. Each nurse seems to be assigned to one or two patients, but, if needed, they cover for each other. By that, I mean that, if for some reason, I needed something and the nurse working with me was tending another patient, a different nurse would stop by to deal with the issue. The first time I went, there were probably only 6 or 7 other patients. This past week, there were probably 15 patients or so-- it was much busier, but I felt like I had more personal attention despite the increased numbers.
Superheroes treat others with kindness and compassion-- even though the circumstances and methods may change over time. The first time around, it felt very much like it was Dr. Johnson and me against the world-- it was definitely one-on-one treatment. Now I feel like I have a whole team of people working in my behalf. The one thing that hasn't changed is the feeling of support and caring that everyone has for me. I'm thankful for the excellent care through it all.
My how things have changed in the past 23 years!! It's still personal treatment, but it's much more like going to the hair salon.
I had such an aggressive cancer last time around that my treatment was also aggressive. The drug regimen is still the preferred treatment today. The difference is that the coping drugs to combat the nausea didn't exist back then. I had the option of being treated in the hospital as an in-patient. Since Mari (my sister) is a nurse and we were staying with friends where the wife was an ER nurse with a masters' degree in nursing, we all were comfortable with the care I would be receiving outside of his office. So, I went to his office for chemo.
Perhaps I should also say that Dr. Johnson had been the head of the Gynecological Oncology Department at the University of Utah Medical School and had only been in private practice for a couple of years. He was very good at his job and extremely personable.
When I arrived at his office, he was the one who poked me to get the IV set up-- but it was a kind of needle that I would keep for the first 8 days of treatment. Now they do a "pic" line inserted near the clavicle, but then it was on the inside of my wrist. That made it awkward, particularly since I'm right-handed and the needle was always in the right wrist. Mari would have to clear it every evening with Heparin to make sure that it wouldn't clot over-- and that stung!
At the beginning of the week, it might take 4-6 hours before I was able to leave the office. But, as treatment continued, my veins would get tired, so that by the end of the week and with each successive round of treatment, I was often in the office 8-9 hours. Dr. Johnson didn't stay by my side that entire time, Mari was there-- but he popped in off and on to check up on me, often between seeing other patients. For the most part, I was the only patient in the treatment room.
Now, it truly is like going to a beauty salon. First the nurse takes me to a regular consultation room where she does the check-in routine-- taking my blood pressure, temperature, weight, etc. Then I either meet with the doctor himself or with the physician's assistant (they alternate visits). They take care of any changes in treatment. This week, he added a new drug for pain-control (the Alleve wasn't working very well) and prescribed something to help me sleep (more on those later).
From there, I got to the treatment room, a large room with probably 12-15 "stations." Each is set up with a recliner, a comfortable chair for a companion, and the pumps, etc. from which the solution bags for the IV can be hung and cabinets with supplies between two stations. At that point, the nurses take over.
Mari was surprised to see that the needles they use for the IV are the smallest ones they make-- they are the size used on the babies in newborn intensive care. Actually, she was also surprised that they were able to pump the medicines (from the IV bags) into my body so fast using such small needles. All I have to say, is that, with such a small needle, I hardly feel the poke. I am so very grateful because, as much as I try to suppress it, I have a little tendency to jump if I can feel myself getting poked-- and it's worse if it hurts!
There have probably been 6-8 nurses there when I have had treatment, although it looks like the room has workstations for 10 nurses or so. Each nurse seems to be assigned to one or two patients, but, if needed, they cover for each other. By that, I mean that, if for some reason, I needed something and the nurse working with me was tending another patient, a different nurse would stop by to deal with the issue. The first time I went, there were probably only 6 or 7 other patients. This past week, there were probably 15 patients or so-- it was much busier, but I felt like I had more personal attention despite the increased numbers.
Superheroes treat others with kindness and compassion-- even though the circumstances and methods may change over time. The first time around, it felt very much like it was Dr. Johnson and me against the world-- it was definitely one-on-one treatment. Now I feel like I have a whole team of people working in my behalf. The one thing that hasn't changed is the feeling of support and caring that everyone has for me. I'm thankful for the excellent care through it all.
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