Our household has been in full-out Hallowe'en mode all week long.
Isaac decided that he wanted his costume to be of Super-Indian. (i.e., Native American, but my former roommate who was/is Navajo still preferred to refer to herself as an Indian. Out of respect for her as one phenomenal woman...) Mom found some basic tan fleece to make the pants' part of his costume. Then she found a flannel-like tan piece that looked like it had a pattern that reminds one of the rock paintings one sees in caves in the Southwestern U.S. for the top. I can't remember exactly what the picture was on the red cape (we are talking a superhero, here), but was was also reminiscent of Indians. She pinned a red felt fringe to along the outer arms and legs of both top and bottom. Isaac was rather insistent that the cape needed to be scary, so Mom pinned plastic glow-in-the-dark skeletons, spiders, and bat-wing rings to it.
Mari spent a couple of days in Las Vegas because that was the closest place she could get into a class for PALS recertification (something she needs to be an ER nurse). She'll be going back again this next week for an ACLS class. While she was gone, the Hallowe'en fever died down a bit, but every day, Isaac came up with another idea having to do with the costume, the pumpkin awaiting transformation into a jack-o'lantern, or concerns about what time to start trick-or-treating.
As for me... I don't usually monitor my temperature on a daily basis, but about a week after both chemo treatments, I've found myself with a temperature over my "limit" of 100.4. When that happens, I have an prescribed antiobiotic on hand, but have to call the doctor before I start taking it. Since this has now happened twice, the person (P.A., nurse?) told me to start taking the pills, but then to check back the following day, if my fever had not responded.
Friday, I was just so tired and so cold, that I initially thought I'd just stay in bed awhile longer. Turned out, that I never really left the bed. I certainly did not go to work. When things hadn't changed on Saturday, I spoke with the on-call doctor from the clinic who felt that I needed to be seen and have a full blood work-up, etc., done. Since the clinic was closed, that meant going to the ER. Oh, and btw, there was a chance that they would admit me, rather than send me home.
Turned out I was dehydrated & the fever was because my white blood cell count was so low. In the end, they pumped me full of IV antibiotics, gave me a prescription for more to take (in addition what I was already taking), and sent me home. Consensus opinion was that there was enough H1N1, etc., floating around the hospital that it was better for me to be out of that environment.
The worst part of the day was trying to give them a decent urine sample. The first time around, I couldn't produce enough to justify the use of the cup. After giving me fluids, I had enough in the cup-- which I tend proceeded to drop and most of the sample fell out of the cup and onto the floor. I was so frustrated I felt like crying! Fortunately, there was enough left in me to produce a third sample. Part of the frustration was that I was so very tired and I had to repeat all of the cleansing procedures each and every time! I cannot express how thankful I was to be done with that particularly simple task. I don't know that anyone can fully appreciate just how daunting it can be sometimes.
While I ended up spending most of the day at the ER, I still figure I had the easy, albeit boring, day. Mari's day, by comparison, had "promises to keep and miles to go" before she could ever sleep!
Mari & Isaac did schoolwork in the morning, but planned their weekly library trip for the afternoon. Isaac wasn't particularly excited about it because his plans (except for the library) were strictly Hallowe'en related.
They thought their weekly trip to the library would be just their standard outing. I totally spaced out (having had no reason to remember before now) on giving her fair warning. Our parents would have died before letting us try to trick-or-treat at a business, but we live in a comparatively small town. The nearest mall is a few towns over, so the downtown businesses invited trick-or-treaters to their establishments between 11 am & 3 pm. They hit the library in the middle of the crush!
We'd already had to talk our socks off to convince Isaac that kids would not be going out until the evening (he was sure that going in the daytime was much better)-- and there was the costume parade going up and down the street to belie our arguments. He was disappointed to discover that, except for the library, he would not be joining their ranks. But, he brightened up, to find that they would be lunching at Arctic Circle where he could get a "square pumpkin," i.e., the standard kids' meal in an jack-o'lantern-style decorated box. Then it was back home for the pumpkin-carving and a rest before the evening's activities would begin.
Back at the ER, at 3:30, Mom & I were told that I was going to be sent home, but that the antiobiotic they had just started would take 2 hours. That meant that the earliest we would arrive at home was 6:30 p.m.-- not counting the need to fill a prescription first. That meant, Mari wouldn't be able to take Isaac out trick-or-treating until after we got home (7 p.m. at the very earliest). She would have to stay home to pass out goodies to those who came to our house until we could get there to take over.
As things turned out, the crisis was averted! In our neighborhood, trick-or-treaters start showing up between 5- and 5:30 p.m. and are finished before 8. Isaac was panicked when the first children showed up at our door-- he was positive that the candy would all be gone before he could even get out our door! At the same time, he was giving miniature glow sticks that Mom had gotten for him to carry as part of his costume to the kids who came do the door. His question to Mari was "Grandma, wouldn't you want me to share?" Mari had him put on his costume so that he would be ready to go at the first opportunity-- and shortly thereafter, his prayers (if he had any) were answered!
Kathy K. (my neighbor and children's music teacher extraordinaire) came by with her children. She invited Isaac to go trick-or-treating with them! They were bringing me a treat, so we were one of the first houses (if not the first) that they stopped at. Isaac already knew and trusted her, and he was so ready to be out of our house! It was such a simple service, but do people realize just how much that kindness meant-- to all of us! Isaac was ecstatic to actually BE trick-or-treating. I was relieved of my guilt over not being home, so that Mom could pass out treats and Mari could be going door-to-door with him. To free up Mari, I had decided that we would just go straight home & then I would go fill the prescription. This option allowed us to fill the prescription first. As it was, the 1st pharmacy was already closed (didn't know the weekend hours were different) and we got to WalMart's pharmacy 10 minutes before their weekend closure time. Even at that, the pharmacist seemed to take pity on me because the clerk wasn't going to accept my prescription. It quickly becomes apparent how that one tiny act of kindness snowballed so that my life could be blessed as a result.
When Superheroes look at their lives, they look for positive chains-of-events. They know that one good thing begets another good thing and "like circles in a pond" the influence of that one good thing ripples out into the world going on forever and ever. Too often people look for the reasons why they are sad or unhappy or unfulfilled in their lives. How much more effective would it be for them to look for reasons that they are happy and fulfilled! How much better to look for a day's positive chain-of-events!
Sunday, November 1, 2009
Sunday, October 25, 2009
Catching up-- Part Three-- Hair
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.
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.
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.
Tuesday, September 29, 2009
Our household is expanding
Today begins another new step in my journey.
My sister, Mari, moved in a few months ago, but has been away for much of that time. Today she returned with Isaac, an 8-year old grandson. Isaac is borderline autistic and the school where he was residing did not have the resouces to meet his needs. So, through many family discussions, it was decided that it was in Isaac's best interests for him to live with his grandmother and go to school here.
The end result is that our household now consists of Mom, Dad, Mari, Isaac and myself-- 4 generations of the same family. Plus the cutest little dog in the world, Sammie, of course.
I've always felt that I wanted my home to be a refuge from the storms of life for all who come in. I've spent the 18+ months trying to get the basement finished. There are still little details that need attending to and the kitchen isn't complete, but I've discovered the truth of the statement: "Build it and [they] will come" (Field of Dreams). For a single women who owns a 5-bedroom, 3-bath house-- I find that I need every one of those rooms. As a matter of fact, Mom isn't willing to let go of the Scout Room/sewing room so that Isaac can have a bedroom to call his own. We'll work out that little detail over the next while.
Superheroes are nothing if not adaptable. They know that circumstances change and are able to adjust accordingly. As their lives fill up, they don't feel crowded because their hearts are able to expand to embrace the changes and other people in their lives. Some days may be rocky-- but that's just part of life. If we didn't have a few rocks to bruise our toes, how would we ever appreciate the times when we have "peace like a river." It should be mentioned that "peace like a river" appears to be peaceful and to flow along, but the current always moves quickly! Life never slows down; it's just that the vista and the horizons change.
Love to you all!
My sister, Mari, moved in a few months ago, but has been away for much of that time. Today she returned with Isaac, an 8-year old grandson. Isaac is borderline autistic and the school where he was residing did not have the resouces to meet his needs. So, through many family discussions, it was decided that it was in Isaac's best interests for him to live with his grandmother and go to school here.
The end result is that our household now consists of Mom, Dad, Mari, Isaac and myself-- 4 generations of the same family. Plus the cutest little dog in the world, Sammie, of course.
I've always felt that I wanted my home to be a refuge from the storms of life for all who come in. I've spent the 18+ months trying to get the basement finished. There are still little details that need attending to and the kitchen isn't complete, but I've discovered the truth of the statement: "Build it and [they] will come" (Field of Dreams). For a single women who owns a 5-bedroom, 3-bath house-- I find that I need every one of those rooms. As a matter of fact, Mom isn't willing to let go of the Scout Room/sewing room so that Isaac can have a bedroom to call his own. We'll work out that little detail over the next while.
Superheroes are nothing if not adaptable. They know that circumstances change and are able to adjust accordingly. As their lives fill up, they don't feel crowded because their hearts are able to expand to embrace the changes and other people in their lives. Some days may be rocky-- but that's just part of life. If we didn't have a few rocks to bruise our toes, how would we ever appreciate the times when we have "peace like a river." It should be mentioned that "peace like a river" appears to be peaceful and to flow along, but the current always moves quickly! Life never slows down; it's just that the vista and the horizons change.
Love to you all!
Sunday, September 27, 2009
Preparing for the next steps
I've been glad to be drain-free this week.
I must admit, however, that at least one of them probably should have stayed in a little longer. Fluid built up and I had to see Dr. Chen on Thursday to have it drained. The good thing was that I couldn't feel a thing-- even though the syringe seemed huge! I'm particularly wary of needles, but I didn't even feel its prick.
While I was there, she also decided to start inflating the tissue expander. The expander already had a "port" so she used a magnetic device to show where to insert the syringe. The needle poked a hole in my skin-- but again I didn't feel much. She refilled the syringe 4 times, but it was all painless.
When I got back to my car, however, I realized that I couldn't extend my arm to close the door. I had to use my right hand and arm. By the time I drove the hour back to work, the muscles in my back were extremely tense. The pain was bad enough that I began to feel nausea. I don't know if I have selective memory or if I've just forgotten, but I don't think I've felt that kind of pain in a long time, certainly not since surgery.
I could only force myself to stay at work for two hours, long enough to make to finish the conference call I in which I needed to participate. But, the moment it was over, I was out the door. I went home and immediately to bed. I hurt so much that I couldn't even move.
With the help of Alleve and the passage of time, I felt well enough to go back to work the next day-- but it felt like it was touch-and-go for most of the morning. I gradually felt better as the day progressed. Later I commented to Mom that I obviously was NOT going to get off scot free. Some days are easier than others and Thursday was a hard day.
I talked to a neighbor who has experience with tissue expanders. My question was "Does it always hurt when they expand?" Her answer was not particularly reassuring-- Yes, it always hurts after expansion. I see Dr. Chen again tomorrow-- and she indicated she might have to "top me off." I'm not excited about the visit.
This coming week I'll be meeting the two oncologists. I'm guessing that my chemo schedule will start the first week in October. The second oncologist will tell definitively whether I will be required to have radiation as well.
Superhero lives aren't necessarily easy. They have problems and experience pain just like everyone else. The difference is that superheroes draw upon their emotional reserves to get them through the moment. Sometimes the moment lasts only a few minutes, but other moments may last days, weeks or even years. I began to realize that this week's lesson was a deeper sense of appreciation for just how much I've been blessed-- for how little pain I have really been experiencing these past few weeks.
Through the pain I was feeling, I gained a greater appreciation for the Atonement of Jesus Christ-- who took upon Himself the sum of my physical, emotional and spiritual pains, as well as the burden of my sins, knowing that it was the only way to make it possible for me to return to live with Him and with Heavenly Father. I have difficulty visualizing the scope of what He took upon Himself in my behalf. Knowing that He did the same for every other person who would ever live upon this earth too, is truly incomprehensible. Yet I know that He accomplished that goal. My sense of humble gratitude, my sense of awe, continues to grow.
I must admit, however, that at least one of them probably should have stayed in a little longer. Fluid built up and I had to see Dr. Chen on Thursday to have it drained. The good thing was that I couldn't feel a thing-- even though the syringe seemed huge! I'm particularly wary of needles, but I didn't even feel its prick.
While I was there, she also decided to start inflating the tissue expander. The expander already had a "port" so she used a magnetic device to show where to insert the syringe. The needle poked a hole in my skin-- but again I didn't feel much. She refilled the syringe 4 times, but it was all painless.
When I got back to my car, however, I realized that I couldn't extend my arm to close the door. I had to use my right hand and arm. By the time I drove the hour back to work, the muscles in my back were extremely tense. The pain was bad enough that I began to feel nausea. I don't know if I have selective memory or if I've just forgotten, but I don't think I've felt that kind of pain in a long time, certainly not since surgery.
I could only force myself to stay at work for two hours, long enough to make to finish the conference call I in which I needed to participate. But, the moment it was over, I was out the door. I went home and immediately to bed. I hurt so much that I couldn't even move.
With the help of Alleve and the passage of time, I felt well enough to go back to work the next day-- but it felt like it was touch-and-go for most of the morning. I gradually felt better as the day progressed. Later I commented to Mom that I obviously was NOT going to get off scot free. Some days are easier than others and Thursday was a hard day.
I talked to a neighbor who has experience with tissue expanders. My question was "Does it always hurt when they expand?" Her answer was not particularly reassuring-- Yes, it always hurts after expansion. I see Dr. Chen again tomorrow-- and she indicated she might have to "top me off." I'm not excited about the visit.
This coming week I'll be meeting the two oncologists. I'm guessing that my chemo schedule will start the first week in October. The second oncologist will tell definitively whether I will be required to have radiation as well.
Superhero lives aren't necessarily easy. They have problems and experience pain just like everyone else. The difference is that superheroes draw upon their emotional reserves to get them through the moment. Sometimes the moment lasts only a few minutes, but other moments may last days, weeks or even years. I began to realize that this week's lesson was a deeper sense of appreciation for just how much I've been blessed-- for how little pain I have really been experiencing these past few weeks.
Through the pain I was feeling, I gained a greater appreciation for the Atonement of Jesus Christ-- who took upon Himself the sum of my physical, emotional and spiritual pains, as well as the burden of my sins, knowing that it was the only way to make it possible for me to return to live with Him and with Heavenly Father. I have difficulty visualizing the scope of what He took upon Himself in my behalf. Knowing that He did the same for every other person who would ever live upon this earth too, is truly incomprehensible. Yet I know that He accomplished that goal. My sense of humble gratitude, my sense of awe, continues to grow.
Sunday, September 20, 2009
Good friends
There is nothing better than a good friend!
I'm talking about the kind of friend who is there for you and who loves you through thick and thin. The kind who looks at you and still sees you without the added pounds and the gray hair. The kind who remembers the flirtatious 20-something, yet is comfortable with the more mature (hopefully) you. The kind who knows all your secrets and foibles-- and loves you in spite of them.
My friend LuWane flew up from San Diego to spend the weekend with me before I start the chemo merry-go-round. She is that kind of friend.
She rode shotgun when we drove around gawking at homes in fancy neighborhoods, discussing the finer points of convincing slow-moving boyfriends to show more commitment. She's also the one who, after getting married, came back to report "she never understood just how easy it was to get married!" At this stage of my life, I can't remember that she imparted that knowledge to the rest of us. If she did, I must not have applied her formula.
I'm the one who was on the other end of the phone when her future husband finally knocked on her door. It was a blind date, set up by a mutual friend, and Mark, who is unfailingly punctual, was 15 minutes late! Neither one of us was particularly enamoured with going on blind dates. The guys were always such jerks that it made us nervous to ask ourselves what the mutual friends must think of us to set us up with that kind of a guy. Was it just that we were both single-- or did they really think that the idiot was someone that matched our personalities?
We've laughed ourselves sick and cried on each other's shoulders. We've shared and appreciated each other's talents and passions. We've traveled the world's cuisine through new ethnic restaurants. We've gone to plays and art museums and had deep philosophical discussions.
This weekend we've shopped and went for a long ride in the mountains to see the beautiful fall leaves. I played the new and interesting role of fashion police, who refused to allow her to buy one more item of clothing in a solid color. What I appreciate most is that we've just talked and talked and laughed and renewed our friendship!
Superheroes find joy is the primary reward of friendship. Friends stick with each other when times are rough, when the bonds of friendship are strained to the limits-- because they know the rewards will make it all worthwhile. They are the real deal; the friendship is based on reality, on everyday give-and-take-- and the determination to see each other through.
I'm talking about the kind of friend who is there for you and who loves you through thick and thin. The kind who looks at you and still sees you without the added pounds and the gray hair. The kind who remembers the flirtatious 20-something, yet is comfortable with the more mature (hopefully) you. The kind who knows all your secrets and foibles-- and loves you in spite of them.
My friend LuWane flew up from San Diego to spend the weekend with me before I start the chemo merry-go-round. She is that kind of friend.
She rode shotgun when we drove around gawking at homes in fancy neighborhoods, discussing the finer points of convincing slow-moving boyfriends to show more commitment. She's also the one who, after getting married, came back to report "she never understood just how easy it was to get married!" At this stage of my life, I can't remember that she imparted that knowledge to the rest of us. If she did, I must not have applied her formula.
I'm the one who was on the other end of the phone when her future husband finally knocked on her door. It was a blind date, set up by a mutual friend, and Mark, who is unfailingly punctual, was 15 minutes late! Neither one of us was particularly enamoured with going on blind dates. The guys were always such jerks that it made us nervous to ask ourselves what the mutual friends must think of us to set us up with that kind of a guy. Was it just that we were both single-- or did they really think that the idiot was someone that matched our personalities?
We've laughed ourselves sick and cried on each other's shoulders. We've shared and appreciated each other's talents and passions. We've traveled the world's cuisine through new ethnic restaurants. We've gone to plays and art museums and had deep philosophical discussions.
This weekend we've shopped and went for a long ride in the mountains to see the beautiful fall leaves. I played the new and interesting role of fashion police, who refused to allow her to buy one more item of clothing in a solid color. What I appreciate most is that we've just talked and talked and laughed and renewed our friendship!
Superheroes find joy is the primary reward of friendship. Friends stick with each other when times are rough, when the bonds of friendship are strained to the limits-- because they know the rewards will make it all worthwhile. They are the real deal; the friendship is based on reality, on everyday give-and-take-- and the determination to see each other through.
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