Just, awesome. My favorite line is "I didn't battle cancer...cancer battled me." I LOVE all of them "shaking it" at the end of the video. Makes me happy watching it. Embracing my baldness.... ~denise
Friday, September 30, 2011
Bald Headed Blues...Yup
Just, awesome. My favorite line is "I didn't battle cancer...cancer battled me." I LOVE all of them "shaking it" at the end of the video. Makes me happy watching it. Embracing my baldness.... ~denise
Monday, September 26, 2011
Chemo #4 and upcoming surgeries
My fourth round of chemo has been extremely hard. It was my last round of Adriamycin and Cytoxan. It's as if they knew - and their parting gifts were extra bouts of nausea, bone pain, thrush (again), muscle pain, and severe fatigue. Chemotherapy is cumulative, so I should have known it was going to be worse than the last round.
Work was out of the question this morning. I could barely get up the stairs to make myself breakfast. Scrambled eggs..and yes, more toast. After making breakfast I was exhausted and had to take a nap.
Our animals are enjoying having me at home. Our dog, Missy, raced downstairs because she now knows my modus operandi is to crawl right back into bed after breakfast. Within minutes I was surrounded by two dogs and two cats (two abstained, or there was simply no more room left on the bed). They must sense I'm not well, and as they tucked themselves around me, they each had to have a paw on me. I envisioned it as a furry "laying of the hands" on my tired body. That in itself was comforting.
Next week I'll start receiving Taxol. Yes, the oncologist said they have it in supply again. I will admit, I'm anxious about it. He explained last week it has the same side effects as A/C. I know he said I'll receive much more dexamethasone, a steroid I have received with each A/C treatment. It seems that he said I would receive about five times the dose I'd received with A/C. He also said it will take 4-5 hours to infuse Taxol into my system. If I understood correctly, it has to be done slowly because there can be reactions to it. The major source of my anxiety comes from the fact it can cause neuropathy, meaning that I could have tingling, pain, in my hands and feet and/or lose the ability to button a shirt or hold a pen. He did say because I'm getting dose-dense treatment for two months (every two weeks x 4 treatments) that I may not get neuropathy. That's my hope!
We also had a lengthy discussion about my BRCA2+ genetic test results. The bottom line is this - he said if I was inclined to have an oopherectomy and bi-lateral mastectomy - that would be the best course of action. My mind was overwhelmed with this prospect so I don't remember every aspect of the conversation, but I know he said something to the effect of "I need to be blunt, cancer could take your life." My friend Sarah was with me and said, "that was hard to hear." It is hard to hear, but I appreciate his honesty. I know what I'm up against.
The oncologist escorted us to the chemo suite and then called the surgeon for me. Some surgeons prefer to do the bi-lateral mastectomy before radiation and other prefer to do it afterwards. My surgeon said she wanted me to get done with chemo and radiation and then we'll proceed with the surgeries. I need that amount of time to come to terms with the surgeries. The oncologist said the oophorectomy is "a chip shot," which Sarah and I found quite funny. He meant it is a fairly "easy" surgery. The bi-lateral mastectomy is another matter altogether.
It's easy to say "they are only breasts" and "I won't let my breasts kill me," which I've said, but mentally it is intensely difficult to know in a matter of months I will have my breasts removed. When I started this blog, I wanted to educate people and document my journey. I thought I would be writing about cancer, treatments, challenges, successes, and eventually, remission. I had no idea my journey was going to delve into such an incredibly personal matter. Yet, I will write about it. It's a part of my journey.
On that note, I've often written that this is a marathon and not a sprint. With these new developments, I realize that it will be more like a lifelong competition against a formidable opponent. I'll do whatever it takes to win the race.
The oncologist escorted us to the chemo suite and then called the surgeon for me. Some surgeons prefer to do the bi-lateral mastectomy before radiation and other prefer to do it afterwards. My surgeon said she wanted me to get done with chemo and radiation and then we'll proceed with the surgeries. I need that amount of time to come to terms with the surgeries. The oncologist said the oophorectomy is "a chip shot," which Sarah and I found quite funny. He meant it is a fairly "easy" surgery. The bi-lateral mastectomy is another matter altogether.
It's easy to say "they are only breasts" and "I won't let my breasts kill me," which I've said, but mentally it is intensely difficult to know in a matter of months I will have my breasts removed. When I started this blog, I wanted to educate people and document my journey. I thought I would be writing about cancer, treatments, challenges, successes, and eventually, remission. I had no idea my journey was going to delve into such an incredibly personal matter. Yet, I will write about it. It's a part of my journey.
On that note, I've often written that this is a marathon and not a sprint. With these new developments, I realize that it will be more like a lifelong competition against a formidable opponent. I'll do whatever it takes to win the race.
Sunday, September 18, 2011
BRCA2 and Henrietta Lacks
So, I've had some time to process my BRCA2 positive test result. I had somehow convinced myself the tests would come back negative despite the fact my mother has had cancer twice and my grandparents on my father's side had breast cancer and prostate cancer.
I received a packet of information from the Myriad Genetic Laboratories, via the Cancer Center, on Thursday, September 15, 2011. It says, "the results of this analysis are consistent with the germline BRCA2 frameshift mutation 4075delGT, resulting in a stop codon at amino acid position 1284 of the BRCA2 protein." It also says, "deleterious mutations in BRCA2 may confer as much as an 84% risk of breast cancer and a 27% risk of ovarian cancer by age 70."
Well, I've become part of the 84% statistic already. I've decided I will have my ovaries removed and will not become a statistic for ovarian cancer. I will likely also have a bi-lateral mastectomy to reduce my chances of getting breast cancer again. The information indicates a cancer risk reduction of 90% with a mastectomy and 96% for oophorectomy (removal of ovaries).
As I mentioned in previous posts, it increases my risk of other cancers as well. The information says, "some families also have an increased risk of pancreatic tumors and melanoma. Consider full body skin exam for melanoma and investigational protocols for pancreatic cancer." This is something I will also speak to the oncologist about on Tuesday.
I am currently reading, The Immortal Life of Henrietta Lacks, by Rebecca Skloot. (Thanks to my friend, Destiny, it is an awesome book.) The cover of the books puts it simply, "Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multimillion-dollar industry. More than twenty year later, her children found out. Their lives would never be the same."
Henrietta was diagnosed with cervical cancer in 1951. And, without knowing, they took healthy and cancerous tissue slices from her cervix. For years, researchers had been trying to grow cell cultures in laboratories. Henrietta's cancerous cells grew - and grew and grew. The book says there is no way to know with accuracy how many of the "HeLa" cells have been grown, but they estimate they would weigh more than 50 million tons. It's incredible. I'm amused by it because her cells have been instrumental in cancer research. The book says they assisted in developing chemotherapy drugs like Taxol, which I will begin receiving in about 16 days. Thank you, Henrietta.
The book also says, (the cells) "helped to developed drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson's disease; and they've been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating...Henrietta's cells have become the standard laboratory workhorse." Amazing, right?!
Disturbingly, her family knew nothing of how her cells were being used for quite some time. Millions of dollars were being made with her cells and her family received no compensation. Skloot addresses other unethical studies performed on humans such as the Tuskegee syphilis study and the research performed by seven Nazi doctors on Jewish people, both studies done without the consent of the individuals, which brings back fond memories of my medial ethics class.
I may tuck myself into bed early this evening and try finish the book. It's extremely sad and fascinating at the same time. I look forward to learning more about her family and whether they were ever given any financial compensation, and what other studies were done with her cells. Oh, I forgot to mention her cells were sent into space with astronauts to see how zero gravity would impact cellular growth.
Changing subjects - I walked up City Creek for the second time since I started chemo this afternoon. Olivia and I designated today as "lazy day," but I just really wanted to get out and enjoy the cooler temperatures and a little sun. I donned one of my favorite new pink shirts, shorts, and shoes. No hat today. I was only able to walk uphill 11 minutes. A far cry from last year when I hiked 6 miles up to the top of Kinport Peak. Argh. It's okay. I took my time and listened to the birds, watched my beloved dragonflies zipping around, and inhaled the clean breeze which had a hint of fall in it.
Unfortunately, I'm still being afflicted by extremely painful back spasms. As I mentioned after my first chemotherapy session, I talked with the oncologist about it and I underwent an MRI to make sure cancer had not spread to my back. Luckily, no cancer was found. But, on day 10 after chemotherapy, without fail, the back spasms return. It is hard to describe. It doesn't seem to be affecting my musculature. It seems as if I have contractions in my spine. I feel a pulsating pain from my hips to the back of my head that lasts for a minute or two. It take my breath away. I'm reluctant to tell the oncologist about it on Tuesday, because I DO NOT want them to reduce my chemotherapy drugs further, but it is equally concerning and painful enough that I'm going to have to bring it up once again.
Hey, I did have a great achievement this week. I was asked by a colleague to tape a session on our local television station about Breast Cancer Awareness Month. October is the 25th anniversary of National Breast Cancer Month. I was more than happy to. Because the PMC Cancer Center staff is so integral to my care, I asked that someone accompany us on the panel. Jennifer Robinson, PA, accompanied us. We talked about breast cancer prevention, screening, forms of breast cancer, my journey and the Women's Health Check program, which screens women with low income for breast and cervical cancer. The show will be aired twice a week during the month of October. I will forever be an advocate for breast cancer awareness and was honored to be asked to tape the show!
So, now, to enjoy the next two days to the fullest. Tuesday is chemo. My fourth and last session of Adriamycin and Cytoxan. Each treatment has made my side effects worse, so I'm anxious about it. I continually remind myself the drugs are killing the cancer cells. My body will become healthy again!
Happy Autumn, everyone!
I received a packet of information from the Myriad Genetic Laboratories, via the Cancer Center, on Thursday, September 15, 2011. It says, "the results of this analysis are consistent with the germline BRCA2 frameshift mutation 4075delGT, resulting in a stop codon at amino acid position 1284 of the BRCA2 protein." It also says, "deleterious mutations in BRCA2 may confer as much as an 84% risk of breast cancer and a 27% risk of ovarian cancer by age 70."
Well, I've become part of the 84% statistic already. I've decided I will have my ovaries removed and will not become a statistic for ovarian cancer. I will likely also have a bi-lateral mastectomy to reduce my chances of getting breast cancer again. The information indicates a cancer risk reduction of 90% with a mastectomy and 96% for oophorectomy (removal of ovaries).
As I mentioned in previous posts, it increases my risk of other cancers as well. The information says, "some families also have an increased risk of pancreatic tumors and melanoma. Consider full body skin exam for melanoma and investigational protocols for pancreatic cancer." This is something I will also speak to the oncologist about on Tuesday.
I am currently reading, The Immortal Life of Henrietta Lacks, by Rebecca Skloot. (Thanks to my friend, Destiny, it is an awesome book.) The cover of the books puts it simply, "Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multimillion-dollar industry. More than twenty year later, her children found out. Their lives would never be the same."
Henrietta was diagnosed with cervical cancer in 1951. And, without knowing, they took healthy and cancerous tissue slices from her cervix. For years, researchers had been trying to grow cell cultures in laboratories. Henrietta's cancerous cells grew - and grew and grew. The book says there is no way to know with accuracy how many of the "HeLa" cells have been grown, but they estimate they would weigh more than 50 million tons. It's incredible. I'm amused by it because her cells have been instrumental in cancer research. The book says they assisted in developing chemotherapy drugs like Taxol, which I will begin receiving in about 16 days. Thank you, Henrietta.
The book also says, (the cells) "helped to developed drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson's disease; and they've been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating...Henrietta's cells have become the standard laboratory workhorse." Amazing, right?!
Disturbingly, her family knew nothing of how her cells were being used for quite some time. Millions of dollars were being made with her cells and her family received no compensation. Skloot addresses other unethical studies performed on humans such as the Tuskegee syphilis study and the research performed by seven Nazi doctors on Jewish people, both studies done without the consent of the individuals, which brings back fond memories of my medial ethics class.
I may tuck myself into bed early this evening and try finish the book. It's extremely sad and fascinating at the same time. I look forward to learning more about her family and whether they were ever given any financial compensation, and what other studies were done with her cells. Oh, I forgot to mention her cells were sent into space with astronauts to see how zero gravity would impact cellular growth.
Changing subjects - I walked up City Creek for the second time since I started chemo this afternoon. Olivia and I designated today as "lazy day," but I just really wanted to get out and enjoy the cooler temperatures and a little sun. I donned one of my favorite new pink shirts, shorts, and shoes. No hat today. I was only able to walk uphill 11 minutes. A far cry from last year when I hiked 6 miles up to the top of Kinport Peak. Argh. It's okay. I took my time and listened to the birds, watched my beloved dragonflies zipping around, and inhaled the clean breeze which had a hint of fall in it.
Unfortunately, I'm still being afflicted by extremely painful back spasms. As I mentioned after my first chemotherapy session, I talked with the oncologist about it and I underwent an MRI to make sure cancer had not spread to my back. Luckily, no cancer was found. But, on day 10 after chemotherapy, without fail, the back spasms return. It is hard to describe. It doesn't seem to be affecting my musculature. It seems as if I have contractions in my spine. I feel a pulsating pain from my hips to the back of my head that lasts for a minute or two. It take my breath away. I'm reluctant to tell the oncologist about it on Tuesday, because I DO NOT want them to reduce my chemotherapy drugs further, but it is equally concerning and painful enough that I'm going to have to bring it up once again.
Hey, I did have a great achievement this week. I was asked by a colleague to tape a session on our local television station about Breast Cancer Awareness Month. October is the 25th anniversary of National Breast Cancer Month. I was more than happy to. Because the PMC Cancer Center staff is so integral to my care, I asked that someone accompany us on the panel. Jennifer Robinson, PA, accompanied us. We talked about breast cancer prevention, screening, forms of breast cancer, my journey and the Women's Health Check program, which screens women with low income for breast and cervical cancer. The show will be aired twice a week during the month of October. I will forever be an advocate for breast cancer awareness and was honored to be asked to tape the show!
So, now, to enjoy the next two days to the fullest. Tuesday is chemo. My fourth and last session of Adriamycin and Cytoxan. Each treatment has made my side effects worse, so I'm anxious about it. I continually remind myself the drugs are killing the cancer cells. My body will become healthy again!
Happy Autumn, everyone!
Tuesday, September 13, 2011
Genetic Test Results Received
What a difference a day makes.
I posted last night about working a full day. It really took a toll on me today. Because I compare my cancer journey to a marathon, I had to come to terms with "pacing" myself better. I've hit my head against this wall several times now. I think I've finally learned the lesson. I left work at noon and took a nap. Then, I resumed some work from home.
During the afternoon I received a call from the Cancer Center. My genetic tests were back and I tested positive for the BRCA2 genetic mutation. I am shocked. I had convinced myself because the original tumor cells were not breast cancer cells the genetic tests would be negative. The nurse said I could come in to discuss the results with the oncologist or wait until my chemotherapy session next week. I said that I would research it on my own and develop my list of questions for the appointment. She said that's what they figured I would do. They are awesome and know me well already.
Yes, I've done some research on it. It has significant implications to be BRCA2 positive. Women are at an 80% risk of getting breast cancer if they are BRCA2 positive. Well, I already have breast cancer so I fall within that statistic now. The other implications are a much higher risk getting breast cancer in the other breast, ovarian cancer, and several other types of cancer.
According to the National Institutes of Health, men and women can test positive for BRCA2. their site says, "In addition to female breast cancer, mutations in one copy of the BRCA2 gene can lead to an increased risk of ovarian cancer, prostate cancer, pancreatic cancer, fallopian tube cancer, male breast cancer, and an aggressive form of skin cancer called melanoma. Mutations in the central part of the gene have been associated with a higher risk of ovarian cancer and a lower risk of prostate cancer than mutations in other parts of the gene." Not very uplifting news.
Many women that test positive for the BRCA2 genetic mutations opt for bi-lateral mastectomy and removal of their ovaries (oophorectomy). I will discuss this further with the oncologist on Tuesday. They indicated in an earlier appointment if the test came back positive I could go to the University of Utah to meet with genetic counselors. Then I will have to make a final decision as to taking the surgical route to reduce my risk of getting cancer again. I'm already leaning in this direction. The decision can wait until after I'm done with chemotherapy and radiation.
The other upsetting factor that plays into this news is that there is a 50% chance my children and sister could have this genetic mutation. We will look at that when the time is right. Let's just keep funding cancer research and hope for additional success in screening and treatment - and A CURE so my children don't have to go through what I am now.
It's a lot to take in. It's hard to not be upset after receiving this news. I'll just let it sink in and educate myself about my options.
I posted last night about working a full day. It really took a toll on me today. Because I compare my cancer journey to a marathon, I had to come to terms with "pacing" myself better. I've hit my head against this wall several times now. I think I've finally learned the lesson. I left work at noon and took a nap. Then, I resumed some work from home.
During the afternoon I received a call from the Cancer Center. My genetic tests were back and I tested positive for the BRCA2 genetic mutation. I am shocked. I had convinced myself because the original tumor cells were not breast cancer cells the genetic tests would be negative. The nurse said I could come in to discuss the results with the oncologist or wait until my chemotherapy session next week. I said that I would research it on my own and develop my list of questions for the appointment. She said that's what they figured I would do. They are awesome and know me well already.
Yes, I've done some research on it. It has significant implications to be BRCA2 positive. Women are at an 80% risk of getting breast cancer if they are BRCA2 positive. Well, I already have breast cancer so I fall within that statistic now. The other implications are a much higher risk getting breast cancer in the other breast, ovarian cancer, and several other types of cancer.
According to the National Institutes of Health, men and women can test positive for BRCA2. their site says, "In addition to female breast cancer, mutations in one copy of the BRCA2 gene can lead to an increased risk of ovarian cancer, prostate cancer, pancreatic cancer, fallopian tube cancer, male breast cancer, and an aggressive form of skin cancer called melanoma. Mutations in the central part of the gene have been associated with a higher risk of ovarian cancer and a lower risk of prostate cancer than mutations in other parts of the gene." Not very uplifting news.
Many women that test positive for the BRCA2 genetic mutations opt for bi-lateral mastectomy and removal of their ovaries (oophorectomy). I will discuss this further with the oncologist on Tuesday. They indicated in an earlier appointment if the test came back positive I could go to the University of Utah to meet with genetic counselors. Then I will have to make a final decision as to taking the surgical route to reduce my risk of getting cancer again. I'm already leaning in this direction. The decision can wait until after I'm done with chemotherapy and radiation.
The other upsetting factor that plays into this news is that there is a 50% chance my children and sister could have this genetic mutation. We will look at that when the time is right. Let's just keep funding cancer research and hope for additional success in screening and treatment - and A CURE so my children don't have to go through what I am now.
It's a lot to take in. It's hard to not be upset after receiving this news. I'll just let it sink in and educate myself about my options.
Monday, September 12, 2011
Loneliness
Yes, I'm lonely. And I didn't want to write about it. I didn't want to really admit it "out loud." I have this incredible support system that continually asks what kind of help I need - and yet I feel afraid to admit to crushing loneliness.
I wonder if other people dealing with cancer have similar thoughts on the topic. I think it's intermingled with being ill from the chemotherapy treatment itself. Being sick from chemo/cancer is different than when you are sick with a cold. You know they will eventually subside in a matter of days, or worst-case scenario, a few weeks. With chemo/cancer, it doesn't go away as quickly. And mentally, especially when you're confined to bed post-chemo, there is no way to realistically turn off your brain and shut out the fact that you have cancer. I do TRY. Honestly. It has been a little over two months since I received my cancer diagnosis. Yes, I have longer periods of time where I go without thinking about cancer. But, it sneaks its way into my consciousness again and I find myself surprised again thinking, "hmmm, I have cancer." A fellow survivor said he doesn't think you get over that shock of being diagnosed with cancer.
Here's how the loneliness came about...
After chemo last week, I was forced to stay home on Thursday and Friday because I was nauseated and so fatigued I couldn't stay awake for more than 30 minutes at a time. The reduction in Cytoxan did reduce my nausea, but it was still bad enough that I put a bucket by my bed. Ugh. The extreme fatigue was new.
I realize I'm saying I am lonely but not feeling well enough to have company. It's a no-win situation, guess. I only got up to make toast and hydrate. My only companions were our dogs and cats. I lifted (yes, lifted) the dogs onto the bed and they nestled in beside me. My comfort animals.
I started to get concerned about the situation on Friday night. I've acknowledged my depression in this venue, and the Cancer Center staff are helping me with it, but I was sleeping so much that I was concerned it was becoming a more chronic issue. I honestly think the sleep marathons were caused by "chemotherapy fatigue." The fatigue was not as crippling on Sunday.
I watched some of the coverage of the anniversary of September 11th on television. I had been avoiding watching coverage because the events on that day are extremely personal for me. That day changed the world, and just as it did for many other families, it had a major impact on our family. Michael received a call on September 12th, 2001, and was put on alert that he may be deployed by the Army. And he was, four years later. As I've said, he is now a Wounded Warrior, after being injured by bomb blasts in 2006.
As I watched the coverage, I cried for those that lost loved ones on September 11th and for the soldiers killed and injured during the war in Iraq and Afghanistan. As I watched the World Trade Center Memorial fountains, the footprints where the World Trade Center towers once stood, I couldn't help but compare the water flowing in the fountains to the amount of tears shed by the world on September 11th, and since. Millions of tears.
Our church had a special service to acknowledge the anniversary of September 11th. That alone was hard for me. Active-duty members of the congregation were asked to wear their uniforms, including our son Conor. My husband Michael should have been there wearing his uniform as well. I was proud of Conor and had to laugh. He played bass guitar with the worship team while wearing his uniform! It was a great visual! I wish I would have gotten a picture of it. [Speaking of pictures, my Dad and Ellen did a "fashion shoot" with Olivia this weekend and took stunning pics of her...it made her weekend!] Physically, I couldn't even stand to sing at church I was feeling so lousy. It's SO frustrating to me having my once healthy body being subdued by chemotherapy treatment.
Note to self and positive affirmation: The limitations are because of the chemotherapy and will be short-term. Chemo will rid my body of cancer and I will regain my strength when I'm in remission.
Today, I was back at work at 8 a.m. It was so good to be with PEOPLE! I'm exhausted this evening. And it was a good day. I received so many cheerful messages that I am again, truly grateful. I received beautiful flowers, a pink t-shirt from a local fire department for Breast Cancer Awareness month, two cards from my "chemo angels," and a beautiful scarf directly from Thailand! A friend of mine from high school has sent me ginger candy to help with nausea (they did) and the scarf. It's incredibly beautiful! Today made up for the loneliness I felt over the preceding days. It was just what I needed.
This week is my "no chemo" week so I'll enjoy the rest of the week until "the smackdown" again next Tuesday! Now...time for healing and restful sleep!
I wonder if other people dealing with cancer have similar thoughts on the topic. I think it's intermingled with being ill from the chemotherapy treatment itself. Being sick from chemo/cancer is different than when you are sick with a cold. You know they will eventually subside in a matter of days, or worst-case scenario, a few weeks. With chemo/cancer, it doesn't go away as quickly. And mentally, especially when you're confined to bed post-chemo, there is no way to realistically turn off your brain and shut out the fact that you have cancer. I do TRY. Honestly. It has been a little over two months since I received my cancer diagnosis. Yes, I have longer periods of time where I go without thinking about cancer. But, it sneaks its way into my consciousness again and I find myself surprised again thinking, "hmmm, I have cancer." A fellow survivor said he doesn't think you get over that shock of being diagnosed with cancer.
Here's how the loneliness came about...
After chemo last week, I was forced to stay home on Thursday and Friday because I was nauseated and so fatigued I couldn't stay awake for more than 30 minutes at a time. The reduction in Cytoxan did reduce my nausea, but it was still bad enough that I put a bucket by my bed. Ugh. The extreme fatigue was new.
I realize I'm saying I am lonely but not feeling well enough to have company. It's a no-win situation, guess. I only got up to make toast and hydrate. My only companions were our dogs and cats. I lifted (yes, lifted) the dogs onto the bed and they nestled in beside me. My comfort animals.
I started to get concerned about the situation on Friday night. I've acknowledged my depression in this venue, and the Cancer Center staff are helping me with it, but I was sleeping so much that I was concerned it was becoming a more chronic issue. I honestly think the sleep marathons were caused by "chemotherapy fatigue." The fatigue was not as crippling on Sunday.
I watched some of the coverage of the anniversary of September 11th on television. I had been avoiding watching coverage because the events on that day are extremely personal for me. That day changed the world, and just as it did for many other families, it had a major impact on our family. Michael received a call on September 12th, 2001, and was put on alert that he may be deployed by the Army. And he was, four years later. As I've said, he is now a Wounded Warrior, after being injured by bomb blasts in 2006.
Our church had a special service to acknowledge the anniversary of September 11th. That alone was hard for me. Active-duty members of the congregation were asked to wear their uniforms, including our son Conor. My husband Michael should have been there wearing his uniform as well. I was proud of Conor and had to laugh. He played bass guitar with the worship team while wearing his uniform! It was a great visual! I wish I would have gotten a picture of it. [Speaking of pictures, my Dad and Ellen did a "fashion shoot" with Olivia this weekend and took stunning pics of her...it made her weekend!] Physically, I couldn't even stand to sing at church I was feeling so lousy. It's SO frustrating to me having my once healthy body being subdued by chemotherapy treatment.
Note to self and positive affirmation: The limitations are because of the chemotherapy and will be short-term. Chemo will rid my body of cancer and I will regain my strength when I'm in remission.
Today, I was back at work at 8 a.m. It was so good to be with PEOPLE! I'm exhausted this evening. And it was a good day. I received so many cheerful messages that I am again, truly grateful. I received beautiful flowers, a pink t-shirt from a local fire department for Breast Cancer Awareness month, two cards from my "chemo angels," and a beautiful scarf directly from Thailand! A friend of mine from high school has sent me ginger candy to help with nausea (they did) and the scarf. It's incredibly beautiful! Today made up for the loneliness I felt over the preceding days. It was just what I needed.
This week is my "no chemo" week so I'll enjoy the rest of the week until "the smackdown" again next Tuesday! Now...time for healing and restful sleep!
Wednesday, September 7, 2011
Chemotherapy #3
I worked before this round & left work after a conference call. The Cancer Center parking lot was FULL so I had to park in the parking garage. I felt a little strange walking in with my big fluffy pink blanket. I am 43-years-old and carrying a blanky. But, it truly does give me great comfort. And warmth! I get so cold during treatments.
My Dad and Ellen came in right after they inserted the tubing to the port, while Brooke was drawing my labwork. Then, we met with the PA, Jennifer. She is awesome. So calm and comforting. We discussed my back spasm, depression, thrush, and nausea and she said she thought the oncologist would want to decrease my Cytoxan by 10%. She said they had decreased my Adriamycin by 10% last time because my WBC's had been so low. I didn't know that! And, I didn't want them to decrease the Cytoxan! I want to kill all the cancer cells. But, Jennifer calmly explained that I have to be healthy enough to finish all of the treatments and they don't want to kill me with chemo. I started singing, "Killing me softly with chemo, killing me softly, with chemo, killing the cancer, with chemo..." She didn't laugh. I thought it was hilarious. Maybe it was my singing. All during our visit my dad is snapping pictures! Some are on FB and I'll post some here.
Also, the Neulast shot is doing its job and my WBC counts were normal! Bonus. They should be with how much the injection costs. It should come and fold my laundry too.
So, then we moved into the chemo suite and got started with the pre-chemo cocktail of Zofran, Ativan, Emend, and Dexamethazone. Then the fun stuff. Cytoxan and then Adriamycin. Dad and Ellie just watched as they dripped into my veins. It's pretty surreal. And, it was so busy. It makes me sad. Almost every chemo chair was full when I got there. I was one of the last ones to leave. I pray for a cure.
Also, the Neulast shot is doing its job and my WBC counts were normal! Bonus. They should be with how much the injection costs. It should come and fold my laundry too.
 |
| Jennifer, PA, telling me they will decrease Cytoxan. |
 |
| Talking with Ellen. |
We talked about my Dad's recent work in New Orleans (he works for UP Railroad teaching new hires) and because he loves photography so much he went to Bourbon Street and got some great shots of the nightlife. He's also taking dragonfly photos. I LOVE DRAGONFLIES. I've even changed from the Pac Man visualization to dragonflies flitting through my system and zapping the cancer cells. I just had a thought, I can start singing, "Another One Bites the Dust," while visualizing the cancer cells dying. I must be in a musical mood.
Around 1:00 p.m. my Dad brought up lunch and being hungry. I told them they could leave, but they didn't want to. Then, Ellen was reading Sunset magazine and talking about great recipes. It just made us hungrier! They ran to Ruby Tuesday and I checked on my work email. I'm a great multi-tasker. Receiving chemo and working! They made it back in time to see Brooke giving me the "Red Devil," the Adriamycin. It's very potent and it turns my urine red for hours afterwards. Sorry, TMI, but information someone else may need to know.
My Dad didn't understand that they major part of my port is under my skin, embedded into my chest. When Brooke took off the tubing and withdrew the needle, he thought the port was out. I showed him the bump and had him feel it....he jumped out of the chair. Too cute, Dad!
Around 1:00 p.m. my Dad brought up lunch and being hungry. I told them they could leave, but they didn't want to. Then, Ellen was reading Sunset magazine and talking about great recipes. It just made us hungrier! They ran to Ruby Tuesday and I checked on my work email. I'm a great multi-tasker. Receiving chemo and working! They made it back in time to see Brooke giving me the "Red Devil," the Adriamycin. It's very potent and it turns my urine red for hours afterwards. Sorry, TMI, but information someone else may need to know.
 |
| Brooke, RN, giving me Adriamycin by hand. |
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| Social Worker/Counselor, Robb. |
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| It's chilly in the chemo suite, so Dad was warming his feet too. |
With the exception of having to reduce the chemo drugs, it was just a relaxing afternoon catching up with my Dad and Ellen. I could sense it was hard for them. It is hard. But, we'll make it through. I love you both.
Five more rounds to go. Then 30-33 rounds of radiation. Another One Bites the Dust...........
Five more rounds to go. Then 30-33 rounds of radiation. Another One Bites the Dust...........
Monday, September 5, 2011
Great Day Followed by Hard Days
It seems to be the case for me. One great day is followed by days of difficulty. I'll admit. I'm really struggling with depression right now. I'm also still really battling back spasms. I actually compare them to contractions in my back from my hips to the back of my neck. I had them all day Friday and they have not subsided. I have chemotherapy tomorrow so I'll bring it up with the oncologist again. The MRI didn't show any cancer, but I wonder if it is a side effect from chemo. I can barely breathe when they happen. It's scary.
I've been in bed all weekend. I finally made myself to get up in order to get a few more school clothes for Olivia. And going to a BBQ this evening at my sister's. Otherwise, I'd still be in bed. Knowing I have chemo tomorrow doesn't help. My Dad and Ellen are going with me. They live in Utah, but will be here for the week are will accompany me. That will help.
I know I'm depressed. I've talked to the Cancer Center staff about it. It's the situation. Missing Michael. Feeling lonely. I just need to pull up my boot straps and get through this.
I've been in bed all weekend. I finally made myself to get up in order to get a few more school clothes for Olivia. And going to a BBQ this evening at my sister's. Otherwise, I'd still be in bed. Knowing I have chemo tomorrow doesn't help. My Dad and Ellen are going with me. They live in Utah, but will be here for the week are will accompany me. That will help.
I know I'm depressed. I've talked to the Cancer Center staff about it. It's the situation. Missing Michael. Feeling lonely. I just need to pull up my boot straps and get through this.
Thursday, September 1, 2011
A Great Day
Yes, today was a GREAT day! And I want to get it in writing.
I had to get up early to take Olivia to her first day of school as a sophomore (yeah!) so I went in to work an hour early. I had a great meeting with the grantees I work with on healthcare emergency preparedness - they are a GREAT group of people. I have to admit I was nervous seeing them for the first time since starting chemo and being bald. I changed outfits three times this morning and tried several variations of hats and scarves before I opted for a black bandanna. I love what I do, and after working with this group for nearly eight years, we have grown to know each other well. They know of the trials and tribulations with my husband's brain injury and now my battle with cancer. Their support has been awesome. (Thanks to all of you.)
The rest of the day was equally rewarding and my energy level was higher than it's been for quite some time. I even thought to myself, "I feel great. I have gone for an hour without thinking 'I have cancer.'" I thought about how awesome it would be to try to go on a run. I have a great new "after-cancer" goal because one of my co-workers has recently taken up running and sent me a quick message today asking if we could run a 5k together when I've kicked cancer's butt and feel better. YES! ABSOLUTELY, I will run with you, Pam! Last year at this time I ran a 10k race (Pocatello Marathon) and won the event for my age group. Now, I would be lucky to get around the track a few times. I stopped by the grocery store on my way home tonight and was winded and exhausted after carrying my grocery bags to the car. I felt like lead. Bummer, yes, but it's okay now that I can look to the future with the 5k goal in mind! :)
The only sadness I've felt today is during and after talking with Michael. He met with the endocrinologist today and she said his pituitary gland is not working at all. It appears to have been damaged in the bomb blasts and it has completely stopped working. He will have to receive testosterone and growth hormone injections for the rest of his life. About five years ago I was battling arthritis (HLA-B27+) and had to give myself injections (and the injections put my arthritis into remission) so he said he wants me to give him the daily growth hormone injections when he comes home. This alone has been a journey in itself. Learning to live with his PTSD, chronic pain, disability, and challenges to daily living activities. It's a small setback learning this new diagnosis, but one we can learn to live with. As we are near the 10 year anniversary of September 11th I am extremely proud of Michael for having gone to Iraq twice for the U.S. military. I have hopes he will be home in the next few weeks. I miss him so much right now.
Olivia had a great first day at school. We talked about her classes and she did homework! For those of you know me well, know that I'm a learning GEEK and LOVE homework. I'm not afraid to let the rest of y'all know that either.
Both of us are already heading to bed. Olivia is in marching band and they start bright and early every day at 6:30 or 7 a.m. so I'll be getting up early again tomorrow.
Oh. My oral thrush is gone...as are my eyebrows. Very weird. And what little stubble I had left on my head was on my pillowcase this morning.. Without stubble acting as "traction" my bandanna slid around on my head all day. I kept adjusting it to try to hide the fact that my eyebrows have fallen out. Oh, the joys of chemo and baldness.
Today... I'm grateful for having such a great day at work and having ENERGY. Good night!
I had to get up early to take Olivia to her first day of school as a sophomore (yeah!) so I went in to work an hour early. I had a great meeting with the grantees I work with on healthcare emergency preparedness - they are a GREAT group of people. I have to admit I was nervous seeing them for the first time since starting chemo and being bald. I changed outfits three times this morning and tried several variations of hats and scarves before I opted for a black bandanna. I love what I do, and after working with this group for nearly eight years, we have grown to know each other well. They know of the trials and tribulations with my husband's brain injury and now my battle with cancer. Their support has been awesome. (Thanks to all of you.)
The rest of the day was equally rewarding and my energy level was higher than it's been for quite some time. I even thought to myself, "I feel great. I have gone for an hour without thinking 'I have cancer.'" I thought about how awesome it would be to try to go on a run. I have a great new "after-cancer" goal because one of my co-workers has recently taken up running and sent me a quick message today asking if we could run a 5k together when I've kicked cancer's butt and feel better. YES! ABSOLUTELY, I will run with you, Pam! Last year at this time I ran a 10k race (Pocatello Marathon) and won the event for my age group. Now, I would be lucky to get around the track a few times. I stopped by the grocery store on my way home tonight and was winded and exhausted after carrying my grocery bags to the car. I felt like lead. Bummer, yes, but it's okay now that I can look to the future with the 5k goal in mind! :)
The only sadness I've felt today is during and after talking with Michael. He met with the endocrinologist today and she said his pituitary gland is not working at all. It appears to have been damaged in the bomb blasts and it has completely stopped working. He will have to receive testosterone and growth hormone injections for the rest of his life. About five years ago I was battling arthritis (HLA-B27+) and had to give myself injections (and the injections put my arthritis into remission) so he said he wants me to give him the daily growth hormone injections when he comes home. This alone has been a journey in itself. Learning to live with his PTSD, chronic pain, disability, and challenges to daily living activities. It's a small setback learning this new diagnosis, but one we can learn to live with. As we are near the 10 year anniversary of September 11th I am extremely proud of Michael for having gone to Iraq twice for the U.S. military. I have hopes he will be home in the next few weeks. I miss him so much right now.
Olivia had a great first day at school. We talked about her classes and she did homework! For those of you know me well, know that I'm a learning GEEK and LOVE homework. I'm not afraid to let the rest of y'all know that either.
Both of us are already heading to bed. Olivia is in marching band and they start bright and early every day at 6:30 or 7 a.m. so I'll be getting up early again tomorrow.
Oh. My oral thrush is gone...as are my eyebrows. Very weird. And what little stubble I had left on my head was on my pillowcase this morning.. Without stubble acting as "traction" my bandanna slid around on my head all day. I kept adjusting it to try to hide the fact that my eyebrows have fallen out. Oh, the joys of chemo and baldness.
Today... I'm grateful for having such a great day at work and having ENERGY. Good night!
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