My week at the Cancer Treatment Center
We drove down to Tulsa on July 26, leaving at 7:30am and arriving at CTCA about 9:30pm. We had rain the night before that made everything bright and pretty in the morning. It was a pleasant drive with many stops to stretch our legs.
Monday
Mammogram – well done with an accomplished technician. Less painful than at Sanford.
Dr. Wakefield, mind body medicine – he recommended laser therapy for neuropathy. We talked about how I have been coping with my limited function, the death of my father, tight finances, and Skye’s problems with marijuana.
Jewelry with Cynthia-made blue and green earrings to go with my top. When she learned I was from South Dakota she said, “Oh, isn’t that the state with the guys in the rock?”
The Ugly Mug – This is new – a traveling ceramic painting shop. CTCA patients and caretakers get a discount. Since Don is my love and my cook, I painted a spoon rest with a heart for him. The piece will be fired and mailed to me.
Tuesday
Laser for neuropathy – should be repeated every three weeks to be effective. Since neuropathy bothers me much less than my other symptoms, I will not pursue further treatment at this time.
Acupuncture – for neuropathy and anxiety. My practitioner, Ashley found acupuncture worked to relieve her social anxiety when she was a teenager. That is why she made it her career. I, too, can feel immediate release of tension. I will try to find a local practitioner for Skye.
Dr. Shrestha – She is sorry to hear that I am having so many problems, but she does not want to label me with a dx of CFS just yet. Will do a complete work up first and check the blood clot. The great news is my blood work and mammogram show no evidence of cancer! Yippee!
Nutrition – This is never my favorite assessment and I really dread it today because I know I have gained weight. In fact, records show that I have gained ELEVEN pounds since February! That is awful. My nutritionist, Gabrielle, says don’t try to completely change my eating habits all at once. For the next three months, just work on portion control, using a salad plate rather than a large dinner plate. Keeping a food diary is very helpful. She and the rest of my team feel my weight gain results from a number of factors – grief over the loss of my dad, anxiety over Skye and finances, and exercise intolerance, not to mention the hormone changes involved with cancer and its treatment. Really, I should not dread this assessment because I have never felt judged here with regard to my weight or anything else – just acceptance and help to refocus on my goals.
Art Demo with Ann – water mixable oils. Ann is a very accomplished artist and teacher. I always enjoy her classes.
Massage Therapy with Michelle – How wonderful. She relieved the edema and congestion in my face and neck to a startlingly noticeable degree. She showed me some techniques to use at home.
Echocardiogram - Normal
Wednesday
Physical Therapy with Glen – He doesn’t seem to understand what happens when I over-do. He gave me resistance band exercises and suggested I do 10 reps of each exercise bilaterally twice in the morning and twice at night. I plan to start with one set per day and work my way up.
Dr. Medlin, psychiatrist – I am doing a lot of things right; e.g., limiting my “worry time” and then asking God to take over, making a list, pacing myself and celebrating accomplishments. He recommends counseling even though I am 60 miles away from any reputable mental health providers. He claims that if I have a ‘good’ therapist, I should feel so much better afterward that the 60 miles seems well worth it. He says I still need to work through all the things that have happened in the past few years one at a time. I don’t know how to do that. I am too busy trying to work through the present! He wants me to practice the progressive muscle relaxation techniques I learned so many years ago at Lamaze childbirth classes. He said I can find guided relaxation on YouTube complete with soothing music. Dr. Medlin also mentioned an antidepressant that may work better with the Xaralto than the one I am taking. However, he feels this is not the right time to make the change.
Speech Therapy with Tammy – She thinks my brain is not so bad as I feel it is. Testing shows that although my scores have fallen from previous levels, I am still in very high percentiles for most cognitive functions. I am low in Language (finding the right word) and attention, and I’m slow in some of the other areas. Chemo can clog the established pathways in the brain, but new pathways can be forged with therapy.
Head CT – ordered because my symptoms mimic some types of brain tumors. The scan was normal
Dr. Shrestha had wanted to run more tests to try to pinpoint the source of my symptoms, but my insurance will only approve procedures connected to a cancer diagnosis. She spoke directly with a peer at the insurance company, but was unable to sway their decision.
Thursday
Physical Therapy with Rachel – She walked with me and helped me to recognize my body’s clues that I have pushed hard enough. She trained me in rhythmic breathing. She gave me an exertion chart to use, reminded me to move more slowly and emphasized it will take time for my body to recover from all it’s been through.
Flash Mob – Happy Socks! Suddenly music and dancers erupted in the area between the clinic and the lobby. After the first dance, they announced a celebration for one of the patients whose tumor is shrinking. They gave anyone walking by or watching a pair of outrageous socks and invited us to dance along to a couple more tunes. I was too breathless to do much dancing, but I enjoyed moving to the beat and clapping along. Everyone was smiling as one of the receptionists danced through with a mini bubble machine.
Pulmonary with Dr. Hervert-She had studied my medical records, seemed sincerely interested and concerned, but has nothing further to offer. She wants to contact my local pulmonologist and will do more research (particularly on CFS), and keep in touch with me.
Went to Jerky Outlet in Broken Arrow at the suggestion of Glen from PT. He set one of my goals to be an outing while at CTCA. Don is quite well known in our community for his homemade deer jerky, so he was intrigued. The shop was welcoming, interesting, and carried really exotic meats like ostrich, kangaroo, and alligator. We were treated to samples. It was quite expensive, but we bought some to bring home as gifts. There was a sponsored outing today to the World Championship Paint Horse Show. I would rather have gone to that, but my appointments were during that time.
Paul Mitchell make-over and massage. More than a dozen students from the nearby school of cosmetology came this evening with their make-up kits. They seemed really excited to share their talents with us. They provided make-overs, hand massages, shoulder massages, hair-dos, and bandana painting! They put on some happy music and danced around and everyone seemed to have a really good time. We also looked damn good!
Friday
Speech Therapy with Tammy – She thinks with intense therapy, I can get my brain back! She says I have a lot to work with. After a week of twice daily therapy I may even be able to do bookwork again! She is eager to work with me as she has had much success in the past. However, I don’t believe my insurance will cover it out of state. I may have to find someone locally though I doubt anyone here would have the same type of experience.
Art with Ann. We used charcoal to draw spheres and a cat eye.
Dr. Shrestha – Recommends follow up with a neurologist and my PCP since she is not able to do a complete work up here. Think about a different hormone suppressor. My symptoms are not reported as side effects of Letrozole, but hormones are tricky and anything is possible.
Elise, naturopath – Also recommends keeping a food diary. Experiment with different foods and watch for any change in symptoms. I may have a possible intolerance to eggs. She suggested I replace one of my supplements with phosphatidyl serine. It has had some success in treating chemo brain, Alzheimer’s, and depression.
Physical Therapy – I did a little work with a stationary peddler, but mostly we just reviewed the exercises and goals. She thinks I will have enough activity and fatigue since we will start driving home this afternoon.
One more wonderful appointment with Michelle. This time she drained enough of the edema to relieve my dizziness. That dizziness has been constant for years! It was usually quite mild unless I exerted myself, bent over, or turned quickly; but it was always present to some extent. Wow, what a relief! Like with the speech therapist, I will need to search for a practitioner closer to home.
We had hoped to do some sightseeing on the way home, but since we have been gone a whole week already, we decided that will wait for another time. We planned to drive ‘til Don got tired and then get a room for the night. He wanted to get by Kansas City first, so it was quite late when we stopped at Olathe. There were no rooms available in the whole city because the Kansas City Chief’s practice camp was starting. I asked, “How many Chiefs are there? Certainly not enough to take up all the rooms!” I guess people come from all over just to watch them practice. Really?!? So, we drove to the next rest stop and napped for a couple hours in the truck. We drove a few more hours then stopped to nap again. When we woke up, the Lions Club was setting up a pancake breakfast there at the rest stop for bikers on their way to Sturgis. We were welcomed too. How cool is that! We stopped in Sioux Falls to drop off some jerky with Matt, then wearily headed home. I was really tired, but not exhausted. I rested most of the day and took a three-hour nap on Sunday. I kept expecting a crash, but it has not come – knock on wood. I seem to be back to a sort of base line. I can function for a few hours, albeit very slowly with frequent breaks to catch my breath. I have been able to complete the strengthening and relaxation exercises once per day. I am so hoping that slowly reconditioning my body and my mind will eventually improve my functionality.
Monday
Mammogram – well done with an accomplished technician. Less painful than at Sanford.
Dr. Wakefield, mind body medicine – he recommended laser therapy for neuropathy. We talked about how I have been coping with my limited function, the death of my father, tight finances, and Skye’s problems with marijuana.
Jewelry with Cynthia-made blue and green earrings to go with my top. When she learned I was from South Dakota she said, “Oh, isn’t that the state with the guys in the rock?”
The Ugly Mug – This is new – a traveling ceramic painting shop. CTCA patients and caretakers get a discount. Since Don is my love and my cook, I painted a spoon rest with a heart for him. The piece will be fired and mailed to me.
Tuesday
Laser for neuropathy – should be repeated every three weeks to be effective. Since neuropathy bothers me much less than my other symptoms, I will not pursue further treatment at this time.
Acupuncture – for neuropathy and anxiety. My practitioner, Ashley found acupuncture worked to relieve her social anxiety when she was a teenager. That is why she made it her career. I, too, can feel immediate release of tension. I will try to find a local practitioner for Skye.
Dr. Shrestha – She is sorry to hear that I am having so many problems, but she does not want to label me with a dx of CFS just yet. Will do a complete work up first and check the blood clot. The great news is my blood work and mammogram show no evidence of cancer! Yippee!
Nutrition – This is never my favorite assessment and I really dread it today because I know I have gained weight. In fact, records show that I have gained ELEVEN pounds since February! That is awful. My nutritionist, Gabrielle, says don’t try to completely change my eating habits all at once. For the next three months, just work on portion control, using a salad plate rather than a large dinner plate. Keeping a food diary is very helpful. She and the rest of my team feel my weight gain results from a number of factors – grief over the loss of my dad, anxiety over Skye and finances, and exercise intolerance, not to mention the hormone changes involved with cancer and its treatment. Really, I should not dread this assessment because I have never felt judged here with regard to my weight or anything else – just acceptance and help to refocus on my goals.
Art Demo with Ann – water mixable oils. Ann is a very accomplished artist and teacher. I always enjoy her classes.
Massage Therapy with Michelle – How wonderful. She relieved the edema and congestion in my face and neck to a startlingly noticeable degree. She showed me some techniques to use at home.
Echocardiogram - Normal
Wednesday
Physical Therapy with Glen – He doesn’t seem to understand what happens when I over-do. He gave me resistance band exercises and suggested I do 10 reps of each exercise bilaterally twice in the morning and twice at night. I plan to start with one set per day and work my way up.
Dr. Medlin, psychiatrist – I am doing a lot of things right; e.g., limiting my “worry time” and then asking God to take over, making a list, pacing myself and celebrating accomplishments. He recommends counseling even though I am 60 miles away from any reputable mental health providers. He claims that if I have a ‘good’ therapist, I should feel so much better afterward that the 60 miles seems well worth it. He says I still need to work through all the things that have happened in the past few years one at a time. I don’t know how to do that. I am too busy trying to work through the present! He wants me to practice the progressive muscle relaxation techniques I learned so many years ago at Lamaze childbirth classes. He said I can find guided relaxation on YouTube complete with soothing music. Dr. Medlin also mentioned an antidepressant that may work better with the Xaralto than the one I am taking. However, he feels this is not the right time to make the change.
Speech Therapy with Tammy – She thinks my brain is not so bad as I feel it is. Testing shows that although my scores have fallen from previous levels, I am still in very high percentiles for most cognitive functions. I am low in Language (finding the right word) and attention, and I’m slow in some of the other areas. Chemo can clog the established pathways in the brain, but new pathways can be forged with therapy.
Head CT – ordered because my symptoms mimic some types of brain tumors. The scan was normal
Dr. Shrestha had wanted to run more tests to try to pinpoint the source of my symptoms, but my insurance will only approve procedures connected to a cancer diagnosis. She spoke directly with a peer at the insurance company, but was unable to sway their decision.
Thursday
Physical Therapy with Rachel – She walked with me and helped me to recognize my body’s clues that I have pushed hard enough. She trained me in rhythmic breathing. She gave me an exertion chart to use, reminded me to move more slowly and emphasized it will take time for my body to recover from all it’s been through.
Flash Mob – Happy Socks! Suddenly music and dancers erupted in the area between the clinic and the lobby. After the first dance, they announced a celebration for one of the patients whose tumor is shrinking. They gave anyone walking by or watching a pair of outrageous socks and invited us to dance along to a couple more tunes. I was too breathless to do much dancing, but I enjoyed moving to the beat and clapping along. Everyone was smiling as one of the receptionists danced through with a mini bubble machine.
Pulmonary with Dr. Hervert-She had studied my medical records, seemed sincerely interested and concerned, but has nothing further to offer. She wants to contact my local pulmonologist and will do more research (particularly on CFS), and keep in touch with me.
Went to Jerky Outlet in Broken Arrow at the suggestion of Glen from PT. He set one of my goals to be an outing while at CTCA. Don is quite well known in our community for his homemade deer jerky, so he was intrigued. The shop was welcoming, interesting, and carried really exotic meats like ostrich, kangaroo, and alligator. We were treated to samples. It was quite expensive, but we bought some to bring home as gifts. There was a sponsored outing today to the World Championship Paint Horse Show. I would rather have gone to that, but my appointments were during that time.
Paul Mitchell make-over and massage. More than a dozen students from the nearby school of cosmetology came this evening with their make-up kits. They seemed really excited to share their talents with us. They provided make-overs, hand massages, shoulder massages, hair-dos, and bandana painting! They put on some happy music and danced around and everyone seemed to have a really good time. We also looked damn good!
Friday
Speech Therapy with Tammy – She thinks with intense therapy, I can get my brain back! She says I have a lot to work with. After a week of twice daily therapy I may even be able to do bookwork again! She is eager to work with me as she has had much success in the past. However, I don’t believe my insurance will cover it out of state. I may have to find someone locally though I doubt anyone here would have the same type of experience.
Art with Ann. We used charcoal to draw spheres and a cat eye.
Dr. Shrestha – Recommends follow up with a neurologist and my PCP since she is not able to do a complete work up here. Think about a different hormone suppressor. My symptoms are not reported as side effects of Letrozole, but hormones are tricky and anything is possible.
Elise, naturopath – Also recommends keeping a food diary. Experiment with different foods and watch for any change in symptoms. I may have a possible intolerance to eggs. She suggested I replace one of my supplements with phosphatidyl serine. It has had some success in treating chemo brain, Alzheimer’s, and depression.
Physical Therapy – I did a little work with a stationary peddler, but mostly we just reviewed the exercises and goals. She thinks I will have enough activity and fatigue since we will start driving home this afternoon.
One more wonderful appointment with Michelle. This time she drained enough of the edema to relieve my dizziness. That dizziness has been constant for years! It was usually quite mild unless I exerted myself, bent over, or turned quickly; but it was always present to some extent. Wow, what a relief! Like with the speech therapist, I will need to search for a practitioner closer to home.
We had hoped to do some sightseeing on the way home, but since we have been gone a whole week already, we decided that will wait for another time. We planned to drive ‘til Don got tired and then get a room for the night. He wanted to get by Kansas City first, so it was quite late when we stopped at Olathe. There were no rooms available in the whole city because the Kansas City Chief’s practice camp was starting. I asked, “How many Chiefs are there? Certainly not enough to take up all the rooms!” I guess people come from all over just to watch them practice. Really?!? So, we drove to the next rest stop and napped for a couple hours in the truck. We drove a few more hours then stopped to nap again. When we woke up, the Lions Club was setting up a pancake breakfast there at the rest stop for bikers on their way to Sturgis. We were welcomed too. How cool is that! We stopped in Sioux Falls to drop off some jerky with Matt, then wearily headed home. I was really tired, but not exhausted. I rested most of the day and took a three-hour nap on Sunday. I kept expecting a crash, but it has not come – knock on wood. I seem to be back to a sort of base line. I can function for a few hours, albeit very slowly with frequent breaks to catch my breath. I have been able to complete the strengthening and relaxation exercises once per day. I am so hoping that slowly reconditioning my body and my mind will eventually improve my functionality.
Replies
Wow, it sounds like you have a team of people on your side. That is so wonderful and so rare. I think it\'s great that you are attacking this from all sides. There\'s so much good in all of these disciplines. I pray you will find good treatments so that you can get to a higher level of functioning. Love you.