JUNE 20, 2011:
It’s been a long time since I’ve written my blog. I apologize for the delay. It isn’t like I’ve been sitting around eating bonbons. I’m back to many of my activities as well as continuing with doctor appointments and catching up on all that I didn’t get done earlier in the year. Several times a week I’d talk to myself about writing
Mostly, I’m feeling well. I’ve regained most of my energy and stamina. My biggest challenge is peripheral neuropathy--some in my hands, more in my feet. It’s worse when I get up from the bed or sitting awhile. Sometimes it causes pain, other times tingling or numbness. The greatest disadvantage is that it feels like I have half-tennis balls under my feet in that my balance isn’t stable. It’s a very common side effect from chemotherapy.
MID AUGUST:
I'm feeling so remiss about not keeping this blog up to date.
So many of you have been fantastic with keeping in touch. I've enjoyed reading about your activities. I thank you so very much for caring and sending cards and notes. I want you to know that your efforts have been beneficial for me. Knowing that I had you surrounding me with love, which converts to me with God/Spirit/Divine, was uplifting. Most days your timing was perfect--an inspiring card or note to boost my spirit just when I needed it.
So often, I start the day determined to add to my blog...only to fail. I've written so very many blogs/notes 'in my head' when I'm doing something that only takes my physical attention. Part of the trouble is that I have so much to write about and I'm not as apt to write at night like I used to do. I'm working at making sure that I get proper rest.
It took a couple of months after I finished my chemo treatments to feel more like my 'old' self although the chemo side effects continued for much longer than I expected--mostly hand and feet neuropathy that worsened as time when on.
I started taking a med in early July (Arimidex) that I think is doing a job on my bones, joints and muscles. I ache all over. It's difficult to bend or squat because of the weakness in my leg muscles. My fingers and arms aren't much better. I'm hoping that this will pass.
I meet with a trainer once a week to learn exercises that I can do at home to strengthen my body. Traci is excellent. She's taught me how to use a ball to exercise which is easier and safer than standing to stretch leg and core muscles. However, her concern for my safety is expressed in ways that indicate I'm an 'old lady'. Now, I know I am 'old;' certainly much older than Traci... Time to face reality...chronically, I am old.
OCTOBER 2-- two months later!
I can't believe that I haven't updated this blog entry yet! My intentions have been admirable, but not productive.
I'm back to feeling decent again. Thank goodness! I was started on Arimidex in July. It's purpose was to stop my body from producing estrogen since my tumor was estrogen receptor positive (ER+). Our bodies need estrogen for our muscles, bones and liver. I felt decades older than the 70 years that I recently celebrated.
After being on the drug about two months, I asked the doctor if I could switch to every other day. He agreed. My reasoning was that the drug is given in the same dose to all women. The median weight of those taking the drug in the study was around 150 lbs. I’m no where near that number. After a few weeks, I continued to have the bone, muscle and joint pain. I wasn't gaining much of my strength back. My right thumb hardly moved and hurt when I needed to move it, especially when using a pen. I exercised it each morning and during the day which seemed to help.
Anyway, I stopped the drug about six weeks ago. Finally a couple weeks ago, I started to gain back my strength and have a reduction of pain. I'm doing well now; it's mostly my hands that have residue side effects.
My doctor suggested acupuncture; I had a treatment last week. I also had a PET/CAT scan later that same day. A needle was used to insert a substance. I didn’t realize that was part of the test; probably not a good idea.
Haven't seen much results yet from the acupuncture. At least I don't have the extreme pain I was having earlier and can hold a pen. Now, it's mostly just a nuisance. I feel strongly that I'm on my way to a complete recovery to B.C. (before chemo).
I'm back to teaching my Mac/Apple classes at our senior center. I've reduced my involvement with AAUW (American Association of University Women) where I was an officer for the past few years. I'm now active with The Women's Fund of Greater Rochester. I believe in the focus of the group, helping women to be independent, by working through effective organizations already established in the area . I also enjoy the company of the other gals that are a part of the group. I found that when I retired I didn't know a lot of people in the Rochester area since we moved here when the kids were in middle and high school, I was working and we were boating and not home that much. Getting involved in the community was my way of meeting other women who lived nearby. It's worked out well for me.
Since my diagnosis, I've been asked to speak about my experiences and what I've learned. I'll be doing a talk on October 8 at the Crittenton Cancer Center for a Swan for Life Event. I thought that I was going to be one of a few speakers. When the invitation arrived I realized that I was the Keynote Speaker. Today and tomorrow I expect to have a pretty good outline of what I'll say.
I'm recently involved with a group called, Caring and Sharing, helping to spread information to cancer patients. Because of my skills, I often do computer and photography work for volunteer groups. Sometimes, that keeps me much than I care to.
During the summer I had the opportunity to attend a wonderful weekend of Wellness at Great Lakes Sanctuary, west/south of Ann Arbor. It was sponsored by a grant from the Susan G. Komen Foundation. It was inspirational, healing, relaxing and invigorating. It was held about six times during the summer with 12 women at each session. The focus of the weekend was "Receiving". It was an eye opener in many ways for me. It was all about taking care of ourselves; I thought I was pretty good at that. Guess not! We participated in several wonderful movement exercises, art experiences, musical therapy, massages, Reiki and had excellent presentations about interesting and inspiring topics. The people who put it on were knowledgeable and caring. I believe every woman (and man) needs to experience a similar weekend. We even had a Foot Fairy visit us at night to massage our feet as we fell asleep. The Sanctuary is set up with simple, yet darling, cabins and facilities. Most of our activities were held outdoors, which I thoroughly enjoyed. At the end of the weekend, I experienced little or no pain. I felt revitalized, peaceful and content.
OCTOBER 9, 2011:
I’m loving our warm weather. I’m feeling well except for my hands and feet. I thought I’d shaken the neuropathy in my feet, but it’s back. It’s worst in the morning or after I’ve been sitting awhile. There’s no doubt that walking reduces it’s hold. The acupuncture hasn’t helped my hands, especially my thumbs. Now my left thumb and hand hurt. That’s the hand where I had the IV for my test. The needle was inserted near where the meridian point is on top of my wrist. Wonder if that caused chaos to my body? It could likely stop an energy flow.
On Saturday I spoke at the Swan for Life Cancer Foundation’s Event at Crittenton Cancer Center, East of Crooks, north of M59. It was a very nice event. The decorations were beautiful (tables were set up by local merchants), the food was delicious and prizes were plentiful.
If you want to read my talk, it is listed under the tab, “SFL Talk” near the top of my Blog: http://josettawood.blogspot.com
I’m grateful to have you as my friend. I’m thankful for your prayers, good wishes and healing energy as well as your notes and cards.
I’ll be seeing Dr. Fata on Monday. Dr. Jasti moved to the Veterans Hospital in order to have more time with her two children. I met with Dr. Fata for the first time, a few weeks ago. He's an incredible listener and very knowledgeable. I've been fortunate to have doctors who communicate well. It sure helps to reduce frustration.
I'm planning to update my Blog regularly again to tell you about some of the great resources I’ve found in our area.
Blessing to all, Josetta
Monday, October 10, 2011
Tuesday, May 03, 2011
Early May Update
I'm sorry for the delay in updating my Blog. Much has transpired since my last entry. I've been busy doing lots of studying and learning and still going to doctor appointments. I've also had lots of feelings that I've been working through--disappointment, anger, abandonment, frustration and more.
I was concerned about a lump that I discovered in February. It was above my right breast (the side of my mastectomy). It was finally 'cleared' this week after seeing three doctors.
It’s been six weeks since my last treatment. Chemo side affects are like the Energizer Bunny--they just keep going and going... I'd hoped by now that the side effects from the chemo would be diminishing--some have increased. I knew that this was a common happening, but hoped that it wouldn't be true for me. I expect that I'll be seeing a change of direction soon.
I'm mostly able to do whatever I desire and am grateful for that ability. The side effects are discomforts and nuisances that take extra patience. I'm wanting to get back to my 'old' self and have a healthy body again.
HAIR: Not sure why, but these past couple of weeks I’ve lost a considerable amount of hair from my head even though I haven’t had a treatment for quite awhile. I thought that new hair would be starting to grow about now. I continue to believe: “There’s no such thing as a bad hair day as long as I have hair.”
This past couple of weeks I’ve also lost most of my eyelashes and most of my eyebrows. I’ve learned why we have eyelashes -- to prevent soap from getting into our eyes when washing our face. It took a few days for me to realize this as I wondered why all of a sudden I was regularly getting soap in my eyes.
I’m pretty much without body hair. Hey, there are advantages; no need to shave my legs or underarms for months. It’s interesting that there are a few stray hairs on my arms and legs--and I mean few -- 4 or 5. I’m getting used to seeing my reflection in the mirror and now recognizing it as me. It’s quite a change from this past Christmas.
Skin and hair follicles are fast-growing cells, so they were damaged along with cancer cells. As a result, think dry, dry and dryer. Showering doesn't take much time, but lubricating my body, face and hair takes twice as long. Yes, I use hand lotion on my hair (front and sides) because it's so dry (a tip from my hairdresser).
MY HEAD: Since my treatments ended six weeks ago, I've had to do a lot of 'head work'. At my first visit with my oncologist after chemo ended, I was expecting to learn about how I could help my body to 'repair' itself to pre-chemo status. There was no advice. I was told that 'in time' I'd get 'better'. I was hoping that my doctor would work with me to monitor my body and guide me with advice. No more blood work was ordered; it was assumed that my liver enzymes, white count and hemoglobin had all returned to normal levels. However, if I was having another chemo treatment the blood work would have been done to 'make sure' that everything was normal...
I think that thousands of people end chemotherapy treatments every day. I would expect that there would be a booklet, a handout, some information on how to help our compromised bodies return to a state of optimal health as well as how to monitor our bodies to know if something was going askew.
My doctor's protocol is typical of medical doctors. She's a caring, knowledgeable individual following the Standards of Practice of medicine. What I've come to realize is that medical doctors focus on treating us when we're ill, in pain or blood work isn't within a normal range. Specific advice for optimal health is not their focus. Yes, we're told: Eat a healthy diet, exercise, maintain a healthy body fat and weight, etc.
My oncologist's interest and focus was for me to begin taking Arimidex, an aromatase inhibitor. She highly recommends that I take it for five years. It works by decreasing the amount of estrogen the body makes. This can slow or stop the growth of breast cancer that is estrogen positive receptive (mine) that needs estrogen to grow. Common side effects are osteoporosis and reduction of HDL (good cholesterol). Our bones need estrogen for bone strength and our liver needs estrogen to produce HDL. A good website to learn more about estrogen and your body is:
http://www.wcn.org/articles/treatment/hormone_therapy/estrogen_receptors/
I was very disappointed. When I got into my car, I cried. I realized after a few days, I was angry. I felt 'abandoned' by the medical profession. I was seeking wellness, greater understanding and healthful living.
When I pursued the topic, my doctor reminded me of the Swan for Life Foundation and their services--acupuncture, a dietitian, a counselor, etc. These are all 'outside' of the services medical professionals provide; they're not covered by insurance.
So for these past several weeks I've been staying present with my feelings and emotions as they arose and faded, no matter how uncomfortable it was for me. I did my best not to fight them or try to figure them out (analyzing or judging), letting them come and go in their own time. Letting go of resistance has helped me to move on...and open up. I've known: What I resist, persists. When I feel my emotions and give them a voice, I can move on. When I whine, I get stuck. I want to move on...no more whining!
Only a small part of my cancer experience is about medicine. Most of it is about feelings and faith, losing and finding my identity and discovering strength and flexibility I never knew I had.
I have lots more I want to share with all of you and I will in future blogs. These past weeks I've mostly been reading and learning more about my body and how it functions and evaluating studies and information to come to a decision of what path I want to pursue for healing of my body.
Many of you have commented about my 'positive attitude' and how that is of great value to my healing. I agree. I've come to the conclusion that no matter what decision I make--as long as I believe it is the right one for me--it will be successful. So, again, I'm back to working on my head to embrace fully the decisions that I make.
I was concerned about a lump that I discovered in February. It was above my right breast (the side of my mastectomy). It was finally 'cleared' this week after seeing three doctors.
It’s been six weeks since my last treatment. Chemo side affects are like the Energizer Bunny--they just keep going and going... I'd hoped by now that the side effects from the chemo would be diminishing--some have increased. I knew that this was a common happening, but hoped that it wouldn't be true for me. I expect that I'll be seeing a change of direction soon.
I'm mostly able to do whatever I desire and am grateful for that ability. The side effects are discomforts and nuisances that take extra patience. I'm wanting to get back to my 'old' self and have a healthy body again.
HAIR: Not sure why, but these past couple of weeks I’ve lost a considerable amount of hair from my head even though I haven’t had a treatment for quite awhile. I thought that new hair would be starting to grow about now. I continue to believe: “There’s no such thing as a bad hair day as long as I have hair.”
This past couple of weeks I’ve also lost most of my eyelashes and most of my eyebrows. I’ve learned why we have eyelashes -- to prevent soap from getting into our eyes when washing our face. It took a few days for me to realize this as I wondered why all of a sudden I was regularly getting soap in my eyes.
I’m pretty much without body hair. Hey, there are advantages; no need to shave my legs or underarms for months. It’s interesting that there are a few stray hairs on my arms and legs--and I mean few -- 4 or 5. I’m getting used to seeing my reflection in the mirror and now recognizing it as me. It’s quite a change from this past Christmas.
Skin and hair follicles are fast-growing cells, so they were damaged along with cancer cells. As a result, think dry, dry and dryer. Showering doesn't take much time, but lubricating my body, face and hair takes twice as long. Yes, I use hand lotion on my hair (front and sides) because it's so dry (a tip from my hairdresser).
MY HEAD: Since my treatments ended six weeks ago, I've had to do a lot of 'head work'. At my first visit with my oncologist after chemo ended, I was expecting to learn about how I could help my body to 'repair' itself to pre-chemo status. There was no advice. I was told that 'in time' I'd get 'better'. I was hoping that my doctor would work with me to monitor my body and guide me with advice. No more blood work was ordered; it was assumed that my liver enzymes, white count and hemoglobin had all returned to normal levels. However, if I was having another chemo treatment the blood work would have been done to 'make sure' that everything was normal...
I think that thousands of people end chemotherapy treatments every day. I would expect that there would be a booklet, a handout, some information on how to help our compromised bodies return to a state of optimal health as well as how to monitor our bodies to know if something was going askew.
My doctor's protocol is typical of medical doctors. She's a caring, knowledgeable individual following the Standards of Practice of medicine. What I've come to realize is that medical doctors focus on treating us when we're ill, in pain or blood work isn't within a normal range. Specific advice for optimal health is not their focus. Yes, we're told: Eat a healthy diet, exercise, maintain a healthy body fat and weight, etc.
My oncologist's interest and focus was for me to begin taking Arimidex, an aromatase inhibitor. She highly recommends that I take it for five years. It works by decreasing the amount of estrogen the body makes. This can slow or stop the growth of breast cancer that is estrogen positive receptive (mine) that needs estrogen to grow. Common side effects are osteoporosis and reduction of HDL (good cholesterol). Our bones need estrogen for bone strength and our liver needs estrogen to produce HDL. A good website to learn more about estrogen and your body is:
http://www.wcn.org/articles/treatment/hormone_therapy/estrogen_receptors/
I was very disappointed. When I got into my car, I cried. I realized after a few days, I was angry. I felt 'abandoned' by the medical profession. I was seeking wellness, greater understanding and healthful living.
When I pursued the topic, my doctor reminded me of the Swan for Life Foundation and their services--acupuncture, a dietitian, a counselor, etc. These are all 'outside' of the services medical professionals provide; they're not covered by insurance.
So for these past several weeks I've been staying present with my feelings and emotions as they arose and faded, no matter how uncomfortable it was for me. I did my best not to fight them or try to figure them out (analyzing or judging), letting them come and go in their own time. Letting go of resistance has helped me to move on...and open up. I've known: What I resist, persists. When I feel my emotions and give them a voice, I can move on. When I whine, I get stuck. I want to move on...no more whining!
Only a small part of my cancer experience is about medicine. Most of it is about feelings and faith, losing and finding my identity and discovering strength and flexibility I never knew I had.
I have lots more I want to share with all of you and I will in future blogs. These past weeks I've mostly been reading and learning more about my body and how it functions and evaluating studies and information to come to a decision of what path I want to pursue for healing of my body.
Many of you have commented about my 'positive attitude' and how that is of great value to my healing. I agree. I've come to the conclusion that no matter what decision I make--as long as I believe it is the right one for me--it will be successful. So, again, I'm back to working on my head to embrace fully the decisions that I make.
THANKS: Again, I thank all of you for your prayers, good wishes, uplifting words, encouragement and healing energy. Your thoughtfulness and concern has been overwhelming. I have been touched beyond measure. I'm blessed by your graces.
I'm continuing to work at answering your emails.
love and hugs, Joey/Josetta
I'm continuing to work at answering your emails.
love and hugs, Joey/Josetta
Monday, April 11, 2011
Chemo Complete
Saturday: April showers bring May flowers. This is a time of believing...that Spring will arrive in Michigan! It's April 9th (our granddaughter's 11th birthday) and we barely have any signs that Spring is on it's way. Our few crocus, that Cathy planted almost thirty years ago, have finally popped up and look like they'll be blooming today. Weather people are predicting that we'll have sixty-degree weather this weekend. Most Michigan residents are waiting expectantly.
Decision: A week ago Thursday I met with my doctor and made the decision to end my chemotherapy treatments--after four sessions. Originally, my doctor had hoped for six with an evaluation after four. She's pleased with four, which is a common regimen for the type of chemo treatments (TC) that I received.
I was having a difficult time watching the deterioration that was happening to my body that was accumulating with each session. Because my chemo was for preventative reasons and because there is no way of knowing whether there were cancer cells in my body and if so, which chemo treatments would be effective for me (it's all statistics); I decided that if four treatments didn't do it, two more probably wouldn't make that much more of an impact. I did know that the deterioration of my body would continue with two more sessions. Chemo only treats cancer cells present in the body. It does nothing to prevent future cancer cells from forming and developing. I've decided I'm going to be the statistic that survives. I'm going to do my best to help my body to do it's job of functioning properly.
It was not a difficult decision for me to make because my gut feeling was so very strong. During my 4th session, I had another reaction to the Tamoxifen--it felt like my body was rejecting the chemo. I have only had a few regrets in my life--all based on not following my strong gut feeling.
After hearing talks by the Dietitian from Swan for Life (Sharon Meyer) and speakers at Gilda's Club (Bharat Aggarwal, PhD), I've decided to spend the next several months building up my body so that it can be effective in doing it's job of stopping cancer cells from growing and then continuing with a maintenance program. Although I ate a very good diet before my cancer was discovered and exercised regularly, I've learned more about preventing inflammation which is a critical component of tumor progression.
These past few weeks I've been spending a few hours each day reading studies from respected universities, cancer centers and the National Cancer Institute. There are many reputable studies showing that diet, spices, herbs, etc. along with exercise can support our bodies to take care of themselves. I'll work with my doctors to go that route. In recent decades, I've had a healthy diet and have exercised regularly. Unfortunately, hormone replacement therapy (HRT) was part of my regimen. The tumor taken from my body showed that it was 99% estrogen receptive positive. The estrogen contributed to the growth of the cells in my breast. Also, because of an accident that I had in 1990 when my jaw was injured and my teeth were moved; I've taken fluoride treatments 3x/year to prevent cavities. That was another contributor to dysfunction within my body.
I've done a lot of reading about chemo sensitivity testing (would a specific chemo respond to or be resistant to a specific tumor). Unfortunately, these tests need fresh tumor samples, so for most patients that isn't possible (the surgery is complete). These tests are more commonly done in Europe although there are some being done in the U.S.. It would have been a major help to know that the chemo I was taking would work against cancer cells in my body and eliminating chemo treatments that were resistant would have been wonderful.
There is much successful research going on using chemo and targeted hormone therapy to shrink and eliminate tumors before surgery. The chemo can then be evaluated as to whether it's doing it's job. Unfortunately, most cancer patients have surgery first, without knowing that there could be an option. If you have a tumor of 2mm or larger, consider visiting an oncologist for a second opinion before surgery.
I've also been doing in-depth learning about how our bodies function. Our bodies are incredible machines: mechanical, biological, chemical, electrical and all systems are intertwined. It's amazing what the body can do to make corrections to 'problem areas'. Unfortunately, very often these corrections can cause other problems. Much has to do with what we put into our bodies via food, the environment, chemicals and medicines.
I want to mention that Medical Doctors (MD's) have to conform to "Standards of Practice". Even though my doctor was supportive of my decision to end my treatments, she first had to say to me, "I cannot recommend that you stop treatments because you have been able to tolerate the treatments." She then talked immediately about why she agreed with my decision. Doctors have to first suggest what is the "standard of practice". Know that there can be options and that your doctor can provide those options. Ultimately, you are in charge of what happens to your body.
One last thought: I saw a short segment on Bloomberg West TV this past week about the Oncotype DX test that I had done that predicted that I would be at high risk of recurrent cancer (distant recurrence within 10 years) and that chemotherapy would reduce that risk by 12%. The test is based on genetic testing done on tissue taken from the tumor during surgery. ( http://www.bloomberg.com/video/68372624/ )
The Oncotype DX
I'm not completely convinced that these tests are as accurate as they're assumed to be. I wish there was a study or results which showed the accuracy of their predictions. I haven't been able to locate any studies. I'm going to ask Dr. Jasti if I'll be part of a followup study--or if there are any studies for followup.
I'm feeling mostly well with a fairly high energy level. My stamina is reduced. I have some peripheral neuropathy (nerve damage in hands and feet) from the chemo and some respiration issues that are gradually being reduced. My nails, skin and hair follicles have been damaged. The results of the fourth treatment will show themselves later this week. No mouth sores, digestive/reproductive tracts issues. Overall, I'm doing very well. I'll continue flushing my system with water and taking probiotics for another week.
Sunday: The temperature in Rochester Hills reached 80 degrees. Spring has arrived...or we skipped it and went directly to Summer. We've experienced that before in Michigan!
Future: I intend to continue my blog with more specific information about diet and it's influence on cancer and other diseases and methods of reducing inflammation in our bodies. Also, I've taken a great interest in our foods today and how they're different than the foods I had as a child. I'll include respected web sites and books for those who want more information.
Healthy and delicious! That's my new mantra. I'm feeling well and focusing on getting my body in prime condition to take care of itself now that I've completed my chemotherapy treatments.
Again, thanks to all of you who responded with 'what's going on in your lives'. We've enjoyed hearing from so many of you. I have your emails marked and intend to followup. Thanks also for the beautiful cards, your caring words, your prayers and good wishes and lots of healing energy that's been sent our way. It's been a humbling experience for me. You've all made my journey much less difficult and much more beautiful.
Decision: A week ago Thursday I met with my doctor and made the decision to end my chemotherapy treatments--after four sessions. Originally, my doctor had hoped for six with an evaluation after four. She's pleased with four, which is a common regimen for the type of chemo treatments (TC) that I received.
I was having a difficult time watching the deterioration that was happening to my body that was accumulating with each session. Because my chemo was for preventative reasons and because there is no way of knowing whether there were cancer cells in my body and if so, which chemo treatments would be effective for me (it's all statistics); I decided that if four treatments didn't do it, two more probably wouldn't make that much more of an impact. I did know that the deterioration of my body would continue with two more sessions. Chemo only treats cancer cells present in the body. It does nothing to prevent future cancer cells from forming and developing. I've decided I'm going to be the statistic that survives. I'm going to do my best to help my body to do it's job of functioning properly.
It was not a difficult decision for me to make because my gut feeling was so very strong. During my 4th session, I had another reaction to the Tamoxifen--it felt like my body was rejecting the chemo. I have only had a few regrets in my life--all based on not following my strong gut feeling.
After hearing talks by the Dietitian from Swan for Life (Sharon Meyer) and speakers at Gilda's Club (Bharat Aggarwal, PhD), I've decided to spend the next several months building up my body so that it can be effective in doing it's job of stopping cancer cells from growing and then continuing with a maintenance program. Although I ate a very good diet before my cancer was discovered and exercised regularly, I've learned more about preventing inflammation which is a critical component of tumor progression.
These past few weeks I've been spending a few hours each day reading studies from respected universities, cancer centers and the National Cancer Institute. There are many reputable studies showing that diet, spices, herbs, etc. along with exercise can support our bodies to take care of themselves. I'll work with my doctors to go that route. In recent decades, I've had a healthy diet and have exercised regularly. Unfortunately, hormone replacement therapy (HRT) was part of my regimen. The tumor taken from my body showed that it was 99% estrogen receptive positive. The estrogen contributed to the growth of the cells in my breast. Also, because of an accident that I had in 1990 when my jaw was injured and my teeth were moved; I've taken fluoride treatments 3x/year to prevent cavities. That was another contributor to dysfunction within my body.
I've done a lot of reading about chemo sensitivity testing (would a specific chemo respond to or be resistant to a specific tumor). Unfortunately, these tests need fresh tumor samples, so for most patients that isn't possible (the surgery is complete). These tests are more commonly done in Europe although there are some being done in the U.S.. It would have been a major help to know that the chemo I was taking would work against cancer cells in my body and eliminating chemo treatments that were resistant would have been wonderful.
There is much successful research going on using chemo and targeted hormone therapy to shrink and eliminate tumors before surgery. The chemo can then be evaluated as to whether it's doing it's job. Unfortunately, most cancer patients have surgery first, without knowing that there could be an option. If you have a tumor of 2mm or larger, consider visiting an oncologist for a second opinion before surgery.
I've also been doing in-depth learning about how our bodies function. Our bodies are incredible machines: mechanical, biological, chemical, electrical and all systems are intertwined. It's amazing what the body can do to make corrections to 'problem areas'. Unfortunately, very often these corrections can cause other problems. Much has to do with what we put into our bodies via food, the environment, chemicals and medicines.
I want to mention that Medical Doctors (MD's) have to conform to "Standards of Practice". Even though my doctor was supportive of my decision to end my treatments, she first had to say to me, "I cannot recommend that you stop treatments because you have been able to tolerate the treatments." She then talked immediately about why she agreed with my decision. Doctors have to first suggest what is the "standard of practice". Know that there can be options and that your doctor can provide those options. Ultimately, you are in charge of what happens to your body.
One last thought: I saw a short segment on Bloomberg West TV this past week about the Oncotype DX test that I had done that predicted that I would be at high risk of recurrent cancer (distant recurrence within 10 years) and that chemotherapy would reduce that risk by 12%. The test is based on genetic testing done on tissue taken from the tumor during surgery. ( http://www.bloomberg.com/video/68372624/ )
The Oncotype DX
I'm not completely convinced that these tests are as accurate as they're assumed to be. I wish there was a study or results which showed the accuracy of their predictions. I haven't been able to locate any studies. I'm going to ask Dr. Jasti if I'll be part of a followup study--or if there are any studies for followup.
I'm feeling mostly well with a fairly high energy level. My stamina is reduced. I have some peripheral neuropathy (nerve damage in hands and feet) from the chemo and some respiration issues that are gradually being reduced. My nails, skin and hair follicles have been damaged. The results of the fourth treatment will show themselves later this week. No mouth sores, digestive/reproductive tracts issues. Overall, I'm doing very well. I'll continue flushing my system with water and taking probiotics for another week.
Sunday: The temperature in Rochester Hills reached 80 degrees. Spring has arrived...or we skipped it and went directly to Summer. We've experienced that before in Michigan!
Future: I intend to continue my blog with more specific information about diet and it's influence on cancer and other diseases and methods of reducing inflammation in our bodies. Also, I've taken a great interest in our foods today and how they're different than the foods I had as a child. I'll include respected web sites and books for those who want more information.
Healthy and delicious! That's my new mantra. I'm feeling well and focusing on getting my body in prime condition to take care of itself now that I've completed my chemotherapy treatments.
Again, thanks to all of you who responded with 'what's going on in your lives'. We've enjoyed hearing from so many of you. I have your emails marked and intend to followup. Thanks also for the beautiful cards, your caring words, your prayers and good wishes and lots of healing energy that's been sent our way. It's been a humbling experience for me. You've all made my journey much less difficult and much more beautiful.
warm regards, Joey/Josetta
Spring, a time of new life!
Spring, a time of new life!
Tuesday, March 29, 2011
Session Four: Day 5
Hi All,
I spent the better part of yesterday updating my blog. When we returned from Gilda's Club last night I was ready to do the final 'touch up' and send it out. Just before I finished, all but the last two lines disappeared. I spent about an hour and a half, reading 'help' info and finally acknowledged, "My words were not to be recovered."
Here's a very quick synopsis: Thursday was Treatment 4. I had another allergic reaction to Taxotere in spite of a 15% reduction and slower infusion. It was handled very well by the oncology staff. It was a long day, we started at 11:00am and left the center a little after 5:00pm with four more hours of cold caps needed at home. I felt good and was able to eat a Middle Eastern Restaurant take out.
Day 2: Friday was good. I mostly felt well, did some chores around the house, got my Neulasta shot around 4:30pm and walked afterwards. We limited our walk on the golf course to a little over a mile because it seemed like the prudent thing to do--although I felt fine, enjoyed being outdoors and chatting with Betsey.
Day 3 (Saturday): I woke up feeling like Raggedy Anne--no/zip/zero energy and achy. I tried my best to convince myself that I needed to get some exercise even if it was walking up the stairs, across the house and back down--couldn't make myself do it. This was one of those "One Day at a Time" days.
Day 4 (Sunday): I woke up feeling like I was going to live. Today was better, a little more energy and less aches. I'm feeling like a wimp. The most difficult part of this is watching what the meds are doing to my body. I struggle with how this can help me to get better. It's the Neulasta shot that seems to be the toughest on my body.
Day 5 (Monday): I'm feeling much better and know that I'm 'going in the right direction'. I attended a talk in the evening at Gilda's Club (Royal Oak) on Inflammation. It was excellent. I'll write more about it later this week.
Day 6: (Tuesday): I'm doing well. Don has a routine cardio checkup today. I'll be going with him and then doing some needed grocery shopping.
Here's a note that was sent to me both Saturday and yesterday from a website that I subscribe to: (I've never received the same note twice before and have found no pattern as to how often they're sent).
"On this day of your life, dear friend ...that any frustration you have is simply the result of wrong thinking. If you were thinking rightly you could not possibly imagine that anything was going 'wrong.' You would know that nothing in the Universe is working against you. By definition, given Who You Are, this is impossible. Move, then to gratitude when you encounter your frustrations. And see every event as an Opportunity. You know exactly why you received this message today.
So, I've changed my thinking, accepted Saturday and yesterday's frustrations as opportunities--which I already know they have been. It's amazing what a change in words can bring.
A BIG thank you to all that wrote to tell me about what's happening with yourselves and your families. We thoroughly enjoyed hearing your stories. I hope to respond to them later in the week. Some were especially interesting and have piqued my curiosity.
I plan to write about some new things I've discovered that have helped me during my tough days. I'm learning much about my body and ways to help it to take care of itself--not something that I was searching for...but certainly worthwhile knowing.
Hope all of you are doing well and enjoying the beautiful sunshine that we've had these past several days. We're so fortunate that the sun shines into our home through different windows depending on the time of the year and the time of day. It's a huge uplift when I've been confined to the indoors.
Thanks for you prayers, good wishes, positive energy and hugs--they're working. regards, Joey/Josetta
I spent the better part of yesterday updating my blog. When we returned from Gilda's Club last night I was ready to do the final 'touch up' and send it out. Just before I finished, all but the last two lines disappeared. I spent about an hour and a half, reading 'help' info and finally acknowledged, "My words were not to be recovered."
Here's a very quick synopsis: Thursday was Treatment 4. I had another allergic reaction to Taxotere in spite of a 15% reduction and slower infusion. It was handled very well by the oncology staff. It was a long day, we started at 11:00am and left the center a little after 5:00pm with four more hours of cold caps needed at home. I felt good and was able to eat a Middle Eastern Restaurant take out.
Day 2: Friday was good. I mostly felt well, did some chores around the house, got my Neulasta shot around 4:30pm and walked afterwards. We limited our walk on the golf course to a little over a mile because it seemed like the prudent thing to do--although I felt fine, enjoyed being outdoors and chatting with Betsey.
Day 3 (Saturday): I woke up feeling like Raggedy Anne--no/zip/zero energy and achy. I tried my best to convince myself that I needed to get some exercise even if it was walking up the stairs, across the house and back down--couldn't make myself do it. This was one of those "One Day at a Time" days.
Day 4 (Sunday): I woke up feeling like I was going to live. Today was better, a little more energy and less aches. I'm feeling like a wimp. The most difficult part of this is watching what the meds are doing to my body. I struggle with how this can help me to get better. It's the Neulasta shot that seems to be the toughest on my body.
Day 5 (Monday): I'm feeling much better and know that I'm 'going in the right direction'. I attended a talk in the evening at Gilda's Club (Royal Oak) on Inflammation. It was excellent. I'll write more about it later this week.
Day 6: (Tuesday): I'm doing well. Don has a routine cardio checkup today. I'll be going with him and then doing some needed grocery shopping.
Here's a note that was sent to me both Saturday and yesterday from a website that I subscribe to: (I've never received the same note twice before and have found no pattern as to how often they're sent).
"On this day of your life, dear friend ...that any frustration you have is simply the result of wrong thinking. If you were thinking rightly you could not possibly imagine that anything was going 'wrong.' You would know that nothing in the Universe is working against you. By definition, given Who You Are, this is impossible. Move, then to gratitude when you encounter your frustrations. And see every event as an Opportunity. You know exactly why you received this message today.
So, I've changed my thinking, accepted Saturday and yesterday's frustrations as opportunities--which I already know they have been. It's amazing what a change in words can bring.
A BIG thank you to all that wrote to tell me about what's happening with yourselves and your families. We thoroughly enjoyed hearing your stories. I hope to respond to them later in the week. Some were especially interesting and have piqued my curiosity.
I plan to write about some new things I've discovered that have helped me during my tough days. I'm learning much about my body and ways to help it to take care of itself--not something that I was searching for...but certainly worthwhile knowing.
Hope all of you are doing well and enjoying the beautiful sunshine that we've had these past several days. We're so fortunate that the sun shines into our home through different windows depending on the time of the year and the time of day. It's a huge uplift when I've been confined to the indoors.
Thanks for you prayers, good wishes, positive energy and hugs--they're working. regards, Joey/Josetta
Wednesday, March 23, 2011
Session 3: Day 15
Hi All, (this was written over the past ten days)
Hope all of you in Michigan are enjoying our almost 60-degree weather. I believe that Spring is just around the corner. My pansies have started growing and life is returning to our part of the world. Today the rain is nurturing growth. I know, I'd rather have the sunshine but too much of anything doesn't work. My Dad's mantra was, "Everything in Moderation". I agree with his observation even though I'm not a fan of rainy days.
I've been doing well this session. My blood work early on showed that my liver was doing much better--only one enzyme slighted elevated. I've had some peripheral neuropathy in my fingers and feet, more this time than previous sessions. I've found that walking and exercising relieves some of the symptoms of numbness in my fingers and the strange sensation in my feet (they feel like they're rounded and challenge my balance when walking).
I've also had some respiratory changes this session. When I'd take a deep breath it was difficult, I'd have a need to cough. I started using the "breath exerciser" every day that I was given in the hospital after my breast surgery in November. I also drank a large pot of tea every day -- a mixture of green tea and "Breathe Easy" herb tea. The tea relieved my symptoms considerably.
This session: NO bloody noses, no sore throats, no intestinal tract issues, no reproductive tract issues. YEA! I attribute that to taking probiotics religiously--more right after my treatments and gradually tapering off. I mentioned in a previous blog that I'm taking capsules containing "billions" rather than "millions" of good bacteria that we need in our guts. Detroit Public Television (channel 56) has a great show explaining The Road to Perfect Health with Brenda Watson, March 26, 11:00am explaining the importance of probiotics for good health.
I''m also experiencing less stamina/energy--although I am probably still at a normal level for most 69-year-olds. I'm tired at the end of a day. On the days when I walk (usually two miles), not much gets done after dinner except relaxation. That's much different for me.
I've learned to start the day with things that are important to me--when I have the most energy. As a result, I've been going through photos on our old computer and saving special ones on to DVD's. It's been a joy to view photos and recall many gatherings and vacations of the early years of this century. I'm also organizing my computers and doing needed backups. I've been doing the same with paper files. I'm no where near "done", but working at it.
I'm putting together a photo collage, "The Wood Family 2010". The finished product will be 20"x30". I can use up to 30 photos. I'll have it printed at Costco. I've gone from 4,500 photos to 200...only 170 more to eliminate!
I'm also working on two photo books: A vacation that I took in 2007 with seven other women on a NarrowBoat (60' by 6'6") when we cruised the Stratford-Upon-Avon Canal of England--which was surrounded with wild flowers, baby animals, ducks, swans and beautiful countryside filled with charm and character. The canal has towpaths that were used by the horses which pulled the original boats 200 years ago when the canals were built. We had to pilot the boat by ourselves (I was known as "Tiller Girl) and open and close the old manual locks (7' wide), fill or empty them, do our own cooking, etc. It was certainly a challenge and an absolutely wonderful experience. I was the only gal from the U.S. It's titled, "A Narrow Boat and a Gaggle of Women".
The 2nd book I'm working on is "Sophia, 2010"--her visits with us. I've been pretty good about doing a book a year for her. When Sophie moved out of state when she was two, a friend suggested that I put together a photo album after each visit as a reminder of good times together. I thought it was an excellent suggestion since much of what I remember from my childhood is based on photographs. Gradually I changed from photo albums to photo books that I put together on my computer and have printed by VioVio.com or Blurb.com.
I'd also like to do a photo book of our car trip to California and back that Don and I did in the fall of 2009. I kept a blog so all the photos and words are organized and 'ready to go'. The last photo book that is 'calling me' is my one month I traveled in Morocco. It was an incredible experience filled with wonderful, unusual adventures--the five days in the desert were memorable along with the people, architecture, food and bazaars.
So, what's keeping all of you busy? I'd love to hear your stories. Send me an email or respond to this post. Thanks to all who have been doing that. I'm reading all of your emails and gradually responding.
I had my doctor's appointment yesterday (Tuesday). My blood levels were good--white blood cell count in the normal range, hemoglobin slightly below the low range. The liver tests will be available this afternoon. She also did a test that has something to do with fluid retention thinking that might be connected with what's going on in my lungs. I also had a chest x ray yesterday. I just read that the Neulasta shot that I get the day after my chemo treatments to boost my bones to produce more white blood cells can cause respiratory problems. Like most of life's choices--there are advantages and disadvantages...
My next chemo treatment is tomorrow (Thursday). Dr. Jasti is reducing the amount of Taxotere that I get by 10/15%. It's the Taxotere that causes most of the permanent side effects. It also will be given at a slower pace to prevent an allergic reaction.
Hope all of you are doing well, staying healthy and enjoying each day. Thanks again for all your prayers, good wishes and wonderful energy that you're sending our way.
warm regards and hugs, Josettantryside, and past pubs, cottages and warehouses.
Hope all of you in Michigan are enjoying our almost 60-degree weather. I believe that Spring is just around the corner. My pansies have started growing and life is returning to our part of the world. Today the rain is nurturing growth. I know, I'd rather have the sunshine but too much of anything doesn't work. My Dad's mantra was, "Everything in Moderation". I agree with his observation even though I'm not a fan of rainy days.
I've been doing well this session. My blood work early on showed that my liver was doing much better--only one enzyme slighted elevated. I've had some peripheral neuropathy in my fingers and feet, more this time than previous sessions. I've found that walking and exercising relieves some of the symptoms of numbness in my fingers and the strange sensation in my feet (they feel like they're rounded and challenge my balance when walking).
I've also had some respiratory changes this session. When I'd take a deep breath it was difficult, I'd have a need to cough. I started using the "breath exerciser" every day that I was given in the hospital after my breast surgery in November. I also drank a large pot of tea every day -- a mixture of green tea and "Breathe Easy" herb tea. The tea relieved my symptoms considerably.
This session: NO bloody noses, no sore throats, no intestinal tract issues, no reproductive tract issues. YEA! I attribute that to taking probiotics religiously--more right after my treatments and gradually tapering off. I mentioned in a previous blog that I'm taking capsules containing "billions" rather than "millions" of good bacteria that we need in our guts. Detroit Public Television (channel 56) has a great show explaining The Road to Perfect Health with Brenda Watson, March 26, 11:00am explaining the importance of probiotics for good health.
I''m also experiencing less stamina/energy--although I am probably still at a normal level for most 69-year-olds. I'm tired at the end of a day. On the days when I walk (usually two miles), not much gets done after dinner except relaxation. That's much different for me.
I've learned to start the day with things that are important to me--when I have the most energy. As a result, I've been going through photos on our old computer and saving special ones on to DVD's. It's been a joy to view photos and recall many gatherings and vacations of the early years of this century. I'm also organizing my computers and doing needed backups. I've been doing the same with paper files. I'm no where near "done", but working at it.
I'm putting together a photo collage, "The Wood Family 2010". The finished product will be 20"x30". I can use up to 30 photos. I'll have it printed at Costco. I've gone from 4,500 photos to 200...only 170 more to eliminate!
I'm also working on two photo books: A vacation that I took in 2007 with seven other women on a NarrowBoat (60' by 6'6") when we cruised the Stratford-Upon-Avon Canal of England--which was surrounded with wild flowers, baby animals, ducks, swans and beautiful countryside filled with charm and character. The canal has towpaths that were used by the horses which pulled the original boats 200 years ago when the canals were built. We had to pilot the boat by ourselves (I was known as "Tiller Girl) and open and close the old manual locks (7' wide), fill or empty them, do our own cooking, etc. It was certainly a challenge and an absolutely wonderful experience. I was the only gal from the U.S. It's titled, "A Narrow Boat and a Gaggle of Women".
The 2nd book I'm working on is "Sophia, 2010"--her visits with us. I've been pretty good about doing a book a year for her. When Sophie moved out of state when she was two, a friend suggested that I put together a photo album after each visit as a reminder of good times together. I thought it was an excellent suggestion since much of what I remember from my childhood is based on photographs. Gradually I changed from photo albums to photo books that I put together on my computer and have printed by VioVio.com or Blurb.com.I'd also like to do a photo book of our car trip to California and back that Don and I did in the fall of 2009. I kept a blog so all the photos and words are organized and 'ready to go'. The last photo book that is 'calling me' is my one month I traveled in Morocco. It was an incredible experience filled with wonderful, unusual adventures--the five days in the desert were memorable along with the people, architecture, food and bazaars.
So, what's keeping all of you busy? I'd love to hear your stories. Send me an email or respond to this post. Thanks to all who have been doing that. I'm reading all of your emails and gradually responding.
I had my doctor's appointment yesterday (Tuesday). My blood levels were good--white blood cell count in the normal range, hemoglobin slightly below the low range. The liver tests will be available this afternoon. She also did a test that has something to do with fluid retention thinking that might be connected with what's going on in my lungs. I also had a chest x ray yesterday. I just read that the Neulasta shot that I get the day after my chemo treatments to boost my bones to produce more white blood cells can cause respiratory problems. Like most of life's choices--there are advantages and disadvantages...
My next chemo treatment is tomorrow (Thursday). Dr. Jasti is reducing the amount of Taxotere that I get by 10/15%. It's the Taxotere that causes most of the permanent side effects. It also will be given at a slower pace to prevent an allergic reaction.
Hope all of you are doing well, staying healthy and enjoying each day. Thanks again for all your prayers, good wishes and wonderful energy that you're sending our way.
warm regards and hugs, Josettantryside, and past pubs, cottages and warehouses.
Monday, March 07, 2011
Rochester Relay for Life Research Project (CPS-3)
How many times have you said, "I wish I could do more"? Well, you can!
The American Cancer Society Relay for Life of Greater Rochester is gearing up for it's June 25/26 fun and fund-raising program at Hart Middle School.
Research Study CPS-3:
This year the Rochester Relay for Life will offer community members a unique opportunity to enroll in a new research study called the Cancer Prevention Study-3 (CPS-3) at the event. The American Cancer Society is inviting men and women between the ages of 30 and 65 years who have never been diagnosed with cancer (not including basal or squamous cell skin cancer) to join this historic research study. The study aims to enroll adults from various racial/ethnic backgrounds from across the U.S.
Individuals need to be willing to make a long-term commitment to the study. Those who choose to enroll will complete a brief initial questionnaire and provide a waist measurement and a small blood sample. Participants will periodically be sent a follow-up questionnaire for the next 20 to 30 years. By joining CPS-3, participants can help the American Cancer Society understand how to prevent cancer, which could save lives and give people more of their most precious resource--time.
I highly encourage you to take part in this research project. Hart Middle School is located at 6500 Sheldon Road, Rochester Hills, 48306 (east of Rochester Road and north of Tienken). Enrollment for the Research Study CPS-3 will take place Saturday, June 25, 2011 from 4:00pm - 8:000pm. Or contact, Katie Brennan at 248.663.3436
For information regarding enrollment for the CPS-3 study at the Relay for Life of Rochester Event, please email: cps3.rochestermi@gmail.com. For more information on the study itself or to find other locations across the U.S. with 2011 enrollments, visit http://www.cancer.org/cps3 or call toll free: 1.888.604.5888.
The purpose of the study is to better understand the factors (lifestyle, environment, genetic) that cause or prevent cancer. Do your part to further efforts in eliminating cancer as a major health concern for future generations! hugs, Josetta
Session 3: Day 5
Hi All,
THANKS for your encouraging words of hope...and your blessings and prayers.
I've had a couple of rough days Saturday and Sunday. I'm feeling this morning like I'm starting to get over the hump. Each time it's a little different -- I get through something that challenged me the previous session and then hit another head on. I mostly slept, drank, went to the bathroom, watched a little TV, repeat, repeat... I had a little fever and was weak and tired. At least I'm content sleeping and laying around -- that's pretty amazing for me!
During the night, my heart kept racing so I did my best to 'settle myself down' using meditation, breathing, etc. without much success. I finally decided to say the rosary...that did it! Each time I'd get up to use the bathroom during the night, I'd go back to where I thought I left off. I think I maybe got through the whole rosary. Wow, that's sure different for me.
This morning I looked through a magazine, "Backyard Living" that I picked up at a doctor's office. It was filled with great easy planting ideas for spring...a real inspiration. Yes, this weekend we go on daylight savings time--days are flying by. Whew! Halfway through...I'm considering looking at stopping at 4 rather than 6. We'll see; I don't need to make that decision now.
Thanks for your wonderful prayers and uplifting words. They're an incredible source of hope and love for me. Josetta
"Sometimes I have to be grateful for the graces I receive, even if they aren't exactly what I had in mind."
Subscribe to:
Posts (Atom)