I am completely exhausted. So, lucky you, you don't have to wade through all my prose because I just want to post a short update and then, well, since I'm at work, passing out isn't an option. But, at least look forward to passing out this evening.
Tuesday's Chemo
I had an 8:30 a.m. appointment. I didn't get my treatment until 11:30 a.m. Figure that one out. I didn't get into work and I am going to be contacting the director of the cancer center about this. Ridiculous. Also, this chemo really doesn't like me as much as past chemos have. I definitely feel icky on Ixempra. Oh well, I'll work on sucking it up. Oh, there is good news: 192 platelets!
Wednesday's Scans
All went according to plan. I was in at 8:00 a.m. and was done by 2:00 p.m. Now, I wait. I hate waiting.
Thursday, August 21, 2008
Monday, August 18, 2008
Journalist, 'My Cancer' Blogger Leroy Sievers Dies
Say a prayer for his wife, Laurie. Be joyful for the courage and hope he inspired in others.
http://www.npr.org/templates/story/story.php?storyId=92028479
http://www.npr.org/templates/story/story.php?storyId=92028479
Sunday, August 17, 2008
Scan Day: Wednesday, 8.20
Initiate requests from the Universe and fervent prayers to espoused deities for regression/stable/NED results... NOW. All comers welcome.
Thank you.
Thank you.
Thursday, August 14, 2008
Update: Professional Cancer Patient Me
I’m stuck. I’m blaming the usual suspect: prednisone. It’s got my head all messed up and I want to round up recent professional cancer patient activities, but I’m feeling really dumb and as if it isn’t worth writing about. More of the same. I’m content, I’m depressed, and I swing unpredictably between the two. So, stuck.
Guess I’ll go straight for the clinical. Can’t get too mired in straight forward facts, right? Monday’s CBC said I have 169 platelets. That, as we all better know by now, is awesome. I am scheduled for chemo next Tuesday. Please note that this makes three scheduled chemos in a row. What, a routine falling into place? Hush yourself. I don’t need you jinxing me.
Mutual Detestation Society
Based on my platelet count, New Doctor has dropped my prednisone by 10 mg. Praise be! She also said that if my counts are still looking good on Tuesday, she’ll drop me another 10 mg. You cannot imagine the sheer relief and pleasure this possibility brings me. I’m tired of feeling like a perpetually humming tuning fork. It’s exhausting. And yet, I cannot sleep. I hate my big, fat, prednisone face and belly. Then there are the cramps in my fingers and jaw. Now, if you’re tired of my relentless jabbering and writing, these little side effects may not sound like such bad things. But, they are painful and they slow my work. You know, my real work. Typing gets challenging.
The physical fatigue is maddening, too. I climb stairs like I’m trying to summit Everest with a 175 pound pack on my back. My quads burn and I have to put two feet on each step before I take on the next. I really hate physical manifestations of what I’m dealing with. F-ing annoying. I’m strong and independent. Huffing and puffing my way around does NOT jive with that view of me.
A Rising Star in the Category of Comorbidities
The radiation damage to my shoulder, which for years existed as deeply burned, reddened and hardened tissue, has now become a gaping, oozing, wound. It requires twice daily dressing changes, antibiotic ointment and over the past two weeks has continued to widen. There are (no kidding) two holes on the top of my right shoulder. I now have a wound care specialist. An x-ray shows that the bone in the area is intact and there is no infection in my bone. That’s the good news. The bad news is that I have a lot of calcifications that are working their way to the surface and destroying any semi-viable tissue in their paths. Hence, the gaping wounds. I'm fighting a strong urge to post a photo of the wounds because it's just that freaky looking.
I saw the wound care specialist yesterday, and he debrided the wounds (again). He said the wounds will probably get bigger. Lovely. Right now, the plan is to get the area cleaned up and as healthy as possible before we consider our next step – how to close the wound up, if that is even possible. I see him again in a month.
But here is the best part: since this wound has opened up, I have developed lymphedema. My arm is swollen with lymphatic fluid that cannot drain properly because I had lymph nodes removed during my mastectomy and the oozy stuff in my wound is over-taxing my body’s sewer system. New Doctor is working on getting me a lymphedema pump and sleeve. I am going with notion that this is a transient thing that will subside once we get my shoulder under control. I need to go with this notion otherwise I’m going to get royally ticked off at the possibility of having to wear a sleeve for the rest of my life.
Scans
To be done this month. I need to schedule.
Donations for Andrea
Assertive Cancer Patient says she has received over $390 in donations for Andrea. That should ease her mind and grocery bill, if only for a little bit. I’ll bet it made her smile at the generosity of those unknown to us but whom we touch. Thank you so much if you contributed.
Guess I’ll go straight for the clinical. Can’t get too mired in straight forward facts, right? Monday’s CBC said I have 169 platelets. That, as we all better know by now, is awesome. I am scheduled for chemo next Tuesday. Please note that this makes three scheduled chemos in a row. What, a routine falling into place? Hush yourself. I don’t need you jinxing me.
Mutual Detestation Society
Based on my platelet count, New Doctor has dropped my prednisone by 10 mg. Praise be! She also said that if my counts are still looking good on Tuesday, she’ll drop me another 10 mg. You cannot imagine the sheer relief and pleasure this possibility brings me. I’m tired of feeling like a perpetually humming tuning fork. It’s exhausting. And yet, I cannot sleep. I hate my big, fat, prednisone face and belly. Then there are the cramps in my fingers and jaw. Now, if you’re tired of my relentless jabbering and writing, these little side effects may not sound like such bad things. But, they are painful and they slow my work. You know, my real work. Typing gets challenging.
The physical fatigue is maddening, too. I climb stairs like I’m trying to summit Everest with a 175 pound pack on my back. My quads burn and I have to put two feet on each step before I take on the next. I really hate physical manifestations of what I’m dealing with. F-ing annoying. I’m strong and independent. Huffing and puffing my way around does NOT jive with that view of me.
A Rising Star in the Category of Comorbidities
The radiation damage to my shoulder, which for years existed as deeply burned, reddened and hardened tissue, has now become a gaping, oozing, wound. It requires twice daily dressing changes, antibiotic ointment and over the past two weeks has continued to widen. There are (no kidding) two holes on the top of my right shoulder. I now have a wound care specialist. An x-ray shows that the bone in the area is intact and there is no infection in my bone. That’s the good news. The bad news is that I have a lot of calcifications that are working their way to the surface and destroying any semi-viable tissue in their paths. Hence, the gaping wounds. I'm fighting a strong urge to post a photo of the wounds because it's just that freaky looking.
I saw the wound care specialist yesterday, and he debrided the wounds (again). He said the wounds will probably get bigger. Lovely. Right now, the plan is to get the area cleaned up and as healthy as possible before we consider our next step – how to close the wound up, if that is even possible. I see him again in a month.
But here is the best part: since this wound has opened up, I have developed lymphedema. My arm is swollen with lymphatic fluid that cannot drain properly because I had lymph nodes removed during my mastectomy and the oozy stuff in my wound is over-taxing my body’s sewer system. New Doctor is working on getting me a lymphedema pump and sleeve. I am going with notion that this is a transient thing that will subside once we get my shoulder under control. I need to go with this notion otherwise I’m going to get royally ticked off at the possibility of having to wear a sleeve for the rest of my life.
Scans
To be done this month. I need to schedule.
Donations for Andrea
Assertive Cancer Patient says she has received over $390 in donations for Andrea. That should ease her mind and grocery bill, if only for a little bit. I’ll bet it made her smile at the generosity of those unknown to us but whom we touch. Thank you so much if you contributed.
Friday, August 8, 2008
August 8, 1995
Just look at them.
Happiness shining in their eyes; both eager to start a life together.
Best friends, lovers and true, comfortable companions.
In each the other found a soul who shared the same goals and dreams for their futures.
Such plans!
They smiled as they took their vow to be true to each other in sickness and in health, and promised to love each other all the days of their lives. It wasn’t all that long until they were challenged to do so.
Resilience. Devotion. Trust. Boundless capacities for forgiveness. Fathomless, near indefinable love.
My Love. My Everything.
They smiled as they took their vow to be true to each other in sickness and in health, and promised to love each other all the days of their lives. It wasn’t all that long until they were challenged to do so.
Resilience. Devotion. Trust. Boundless capacities for forgiveness. Fathomless, near indefinable love.
My Love. My Everything.
Wednesday, August 6, 2008
Cancer vs Medical Expenses: Which Will Kill You First?
Those in my direct line of fire have heard me rant with frustration about the financial burden my cancer puts on me and my family. I work full time and have good medical benefits. But, the money that flies out the door to continue my treatment has me in constant worry about having to sell our home. I pay my bills on time, but when I was on disability for three months, things got really sketchy. I have a beautiful home, put food on my table, heat my home and my child is properly attired. I am not destitute, just very, very, very overwhelmed.
BUT, I also acknowledged that I am among the lucky ones who can work, and have benefits. If it comes to it, I can sell my house and move into a condo to continue paying for co-pays, prescriptions and, oh, more co-pays and prescriptions. That's life, right? I know many others fare far worse monetarily than I because of their cancer. THIS is about one of them.
Assertive Cancer Patient posted the other day about Andrea, a woman she recently met who is facing Stage IV breast cancer as a single mother of a three-year-old. She is on disability and struggling very badly to make ends meet. She posts about it here and has set up a fundraiser to help Andrea out. She is hoping to collect enough money for Andrea to buy enough groceries for the next month. If you can, please consider making a donation.
Teri, The Cheeky Librarian, has also entered the scene to get some assistance behind Andrea. She shares her opinions on the topic the costs of cancer to the individual patient and helpfully includes links to possible sources of funds, for those of you who need financial assistance.
BUT, I also acknowledged that I am among the lucky ones who can work, and have benefits. If it comes to it, I can sell my house and move into a condo to continue paying for co-pays, prescriptions and, oh, more co-pays and prescriptions. That's life, right? I know many others fare far worse monetarily than I because of their cancer. THIS is about one of them.
Assertive Cancer Patient posted the other day about Andrea, a woman she recently met who is facing Stage IV breast cancer as a single mother of a three-year-old. She is on disability and struggling very badly to make ends meet. She posts about it here and has set up a fundraiser to help Andrea out. She is hoping to collect enough money for Andrea to buy enough groceries for the next month. If you can, please consider making a donation.
Teri, The Cheeky Librarian, has also entered the scene to get some assistance behind Andrea. She shares her opinions on the topic the costs of cancer to the individual patient and helpfully includes links to possible sources of funds, for those of you who need financial assistance.
Tuesday, August 5, 2008
A New Resource for Those Living with Advanced Cancer
Laura Parisi King has been living with advanced breast cancer since 2002. She is a social worker who runs creative writing workshops for people with cancer, and support groups for men, women, patients and caregivers. Furthermore, she has been a guest speaker for various cancer coalitions and is the author of the book Dear Cancer. Did I mention that this woman is also Stage IV?! I'm tired just writing about her.
Laura has just launched a Web site specifically for people living with metastatic disease. It provides resources, information and a call to action to drive more awareness of living with advanced cancer. It is also a work in progress, so I'm betting you are going to see more on this site soon. If you are someone living with advanced cancer or happen to love one of them, please check out: http://www.livingwithstageiv.com/
Laura has just launched a Web site specifically for people living with metastatic disease. It provides resources, information and a call to action to drive more awareness of living with advanced cancer. It is also a work in progress, so I'm betting you are going to see more on this site soon. If you are someone living with advanced cancer or happen to love one of them, please check out: http://www.livingwithstageiv.com/
Monday, August 4, 2008
Suggested Reading Material
With many thanks and great credit to Nancy Mills of Spirited Woman, my Q&A for the August E-Newsletter:
We all know about Facebook, the social networking site that brings people together. Well, long story short, Tracy Pleva-Hill is one of my Facebook friends. When I saw that picture of Tracy standing next to her motorcycle, I was so taken by her spirit that I reached out to her. I've rarely done that with my Facebook friends or most people for that matter. And I must say my instincts were right.
I later found out that Tracy, who lives in Flemington, New Jersey with her husband and son, is one of the bravest, most spirited women on the planet. At the age of 32, Tracy was diagnosed with Stage IIb, triple negative breast cancer - one year after her son's birth. Since then, for eight years now, she has been fighting for her life and winning the battle.
Tracy is a true survivor, mother, wife, PR professional at the MCS agency, and heroine of her own courageous, passionate life story. Her attitude about life is incredible. Normally, I do a Q&A with my interview subjects, but I received an e-mail from Tracy that so touched and moved me, that I am including it in its entirety below. Tracy is an inspirational gift to us all - and I urge you to support her and to continue following her story at her blog: http://fstage4.blogspot.com/
The Damn Disease
I was diagnosed with Stage IIb, triple negative breast cancer in 2000 at the age of 32. For a full account of this experience, you can go Here. Ten months after completing my treatment (mastectomy, reconstruction and 8 rounds of chemo) I discovered enlarged lymph nodes around my collar bone. My disease had progressed to Stage IV. Since then, I have been on some form of chemotherapy to try and manage my disease. In that time, I've experienced other progressions and have had to change treatments several times. I have had mets to my brain three times (most recently identified in April and obliterated in May via Gamma Knife, a radiation therapy), and this crap loves my lymph nodes. I have had CyberKnife therapy, another form of radiation, to pulmonary nodes in my chest, and just this week, nodes around my opposite collar bone. I also apparently have a lung nodule. This is a new and scary involvement for me.
In addition to dealing with my cancer, in late 2006 I developed an ITP -- idiopathic thombocytic pupura. Which essentially means, your platelets are disappearing and we don't know why. I've developed some sort of antibody against my own platelets. My bone marrow makes them, the antibody eats them. If your platelets are too low, you cannot get chemotherapy. Chemotherapy is all I have. So, this has been a very distressing ride for me as I have spent the better part of the past year NOT getting treated for my disease.Things are looking up right now. Thanks to steroids (UGH) and a new ITP drug, my platelets have rebounded and I started chemo again last week. I was VERY excited! My doctors and I are working very hard to find a balance so we can continue to treat my disease as appropriate while not killing my platelets. It's been a challenge.
My Family and Friends
My husband and son are my life. I live for them. I want them to have as normal an existence as possible. Hell, I want to have as normal an existence as possible. My son has never known me as anyone but a person with cancer. He's sat on my lap as a toddler while I've received infusions and now that he is older, he is friendly with my doctors and nurses. Cancer and marriage? That's a hard one. I am blessed in that my husband is my best friend and our love is solid. But this disease has ravaged our relationship in many ways and I feel very, very cheated by it. After all this time... I still feel ripped off. However, there is love, support and happiness in our home. It's the best gift I have.I am also lucky to have fantastic parents and sisters. There has never been any question about support from my family. It's there. It always has been. My friends, as well, are terrific. I have never gone through the negative experience of having someone drop by the wayside because of my disease. Blessed, blessed, blessed.
Work
I have been a public relations professional for nearly 20 years. While always an account person, the complications of my disease over the past years have made it very difficult for me to be a reliable contact for clients. My agency, MCS, has been enormously supportive and accommodating of me throughout all of it. Although I can no longer manage account teams my skills have been transferred to an HR roll, which is something that our agency needed but was not fully addressed. In my new role, I have more flexibility with my time and can still help the agency and the fabulous people who work there achieve their best.
MCS is a privately held company that focuses solely on health care. Considering how much of my life is tied up in health care, you can imagine my happiness at being able to work at a shop like this. And, yes, I work full time. In fact, I have never not worked full time during this experience except for when I had my mastectomy, and this past Dec - Mar when I took disability to focus on getting my ITP under control.
Organizations
Early in my cancer experience, I was heavily involved with the Young Survival Coalition http://www.youngsurvival.org. In fact, I appear in a few of their support views: Fighting for Our Future and The Beautiful 8 (about living with metastatic disease). After my metastatic dx, I found I needed to pull back from my volunteer and advocacy work. But, I am still very much in touch with them and the founders of this fantastic organization. They paved the way for building awareness about young women and breast cancer as well as living with metastatic disease.
Last year, I participated in Amazon Heart Thunder UK. It was a 10-day motorcycle ride through Scotland and England with 20 other women breast cancer survivors. It was truly a life changing experience for me and I would go on for pages about it if you give me a chance. You can find Amazon Heart here: http://www.amazonheart.org.
What Do I Like?
Being with my family. Working. Being independent. Motorcycles (although I just sold mine this year and miss it TERRIBLY. But, since I am having problems with my platelets, it's probably not a good idea for me to be ripping around on a sport bike with no ability to clot), reading when I can. Being with friends. The ocean. The simple pleasures, with some special luxuries thrown in because I deserve them!
Why Do I feel that I am a Spirited Woman?
I am a Spirited Woman because I draw upon the power that I have within me to live the best life that I possibly can with metastatic breast cancer. I acknowledge the challenge I face and the difficulties that breast cancer places in my life. But I work very hard not to allow it to consume me. And for each attack it launches upon me, I retaliate. I reassess my strategy and develop a new plan. I make cancer fight for every little thing it takes from me. I do not give cancer any credit for bringing positive things to my life. I create the good in my life. Any strength or courage that people might see in me is mine.
THANK YOU TRACY FOR GIFTING US ALL WITH YOUR LIFE
Tracy welcomes hearing from you. She invites you to follow her continuing story at http://fstage4.blogspot.com/.
We all know about Facebook, the social networking site that brings people together. Well, long story short, Tracy Pleva-Hill is one of my Facebook friends. When I saw that picture of Tracy standing next to her motorcycle, I was so taken by her spirit that I reached out to her. I've rarely done that with my Facebook friends or most people for that matter. And I must say my instincts were right.
I later found out that Tracy, who lives in Flemington, New Jersey with her husband and son, is one of the bravest, most spirited women on the planet. At the age of 32, Tracy was diagnosed with Stage IIb, triple negative breast cancer - one year after her son's birth. Since then, for eight years now, she has been fighting for her life and winning the battle.
Tracy is a true survivor, mother, wife, PR professional at the MCS agency, and heroine of her own courageous, passionate life story. Her attitude about life is incredible. Normally, I do a Q&A with my interview subjects, but I received an e-mail from Tracy that so touched and moved me, that I am including it in its entirety below. Tracy is an inspirational gift to us all - and I urge you to support her and to continue following her story at her blog: http://fstage4.blogspot.com/
The Damn Disease
I was diagnosed with Stage IIb, triple negative breast cancer in 2000 at the age of 32. For a full account of this experience, you can go Here. Ten months after completing my treatment (mastectomy, reconstruction and 8 rounds of chemo) I discovered enlarged lymph nodes around my collar bone. My disease had progressed to Stage IV. Since then, I have been on some form of chemotherapy to try and manage my disease. In that time, I've experienced other progressions and have had to change treatments several times. I have had mets to my brain three times (most recently identified in April and obliterated in May via Gamma Knife, a radiation therapy), and this crap loves my lymph nodes. I have had CyberKnife therapy, another form of radiation, to pulmonary nodes in my chest, and just this week, nodes around my opposite collar bone. I also apparently have a lung nodule. This is a new and scary involvement for me.
In addition to dealing with my cancer, in late 2006 I developed an ITP -- idiopathic thombocytic pupura. Which essentially means, your platelets are disappearing and we don't know why. I've developed some sort of antibody against my own platelets. My bone marrow makes them, the antibody eats them. If your platelets are too low, you cannot get chemotherapy. Chemotherapy is all I have. So, this has been a very distressing ride for me as I have spent the better part of the past year NOT getting treated for my disease.Things are looking up right now. Thanks to steroids (UGH) and a new ITP drug, my platelets have rebounded and I started chemo again last week. I was VERY excited! My doctors and I are working very hard to find a balance so we can continue to treat my disease as appropriate while not killing my platelets. It's been a challenge.
My Family and Friends
My husband and son are my life. I live for them. I want them to have as normal an existence as possible. Hell, I want to have as normal an existence as possible. My son has never known me as anyone but a person with cancer. He's sat on my lap as a toddler while I've received infusions and now that he is older, he is friendly with my doctors and nurses. Cancer and marriage? That's a hard one. I am blessed in that my husband is my best friend and our love is solid. But this disease has ravaged our relationship in many ways and I feel very, very cheated by it. After all this time... I still feel ripped off. However, there is love, support and happiness in our home. It's the best gift I have.I am also lucky to have fantastic parents and sisters. There has never been any question about support from my family. It's there. It always has been. My friends, as well, are terrific. I have never gone through the negative experience of having someone drop by the wayside because of my disease. Blessed, blessed, blessed.
Work
I have been a public relations professional for nearly 20 years. While always an account person, the complications of my disease over the past years have made it very difficult for me to be a reliable contact for clients. My agency, MCS, has been enormously supportive and accommodating of me throughout all of it. Although I can no longer manage account teams my skills have been transferred to an HR roll, which is something that our agency needed but was not fully addressed. In my new role, I have more flexibility with my time and can still help the agency and the fabulous people who work there achieve their best.
MCS is a privately held company that focuses solely on health care. Considering how much of my life is tied up in health care, you can imagine my happiness at being able to work at a shop like this. And, yes, I work full time. In fact, I have never not worked full time during this experience except for when I had my mastectomy, and this past Dec - Mar when I took disability to focus on getting my ITP under control.
Organizations
Early in my cancer experience, I was heavily involved with the Young Survival Coalition http://www.youngsurvival.org. In fact, I appear in a few of their support views: Fighting for Our Future and The Beautiful 8 (about living with metastatic disease). After my metastatic dx, I found I needed to pull back from my volunteer and advocacy work. But, I am still very much in touch with them and the founders of this fantastic organization. They paved the way for building awareness about young women and breast cancer as well as living with metastatic disease.
Last year, I participated in Amazon Heart Thunder UK. It was a 10-day motorcycle ride through Scotland and England with 20 other women breast cancer survivors. It was truly a life changing experience for me and I would go on for pages about it if you give me a chance. You can find Amazon Heart here: http://www.amazonheart.org.
What Do I Like?
Being with my family. Working. Being independent. Motorcycles (although I just sold mine this year and miss it TERRIBLY. But, since I am having problems with my platelets, it's probably not a good idea for me to be ripping around on a sport bike with no ability to clot), reading when I can. Being with friends. The ocean. The simple pleasures, with some special luxuries thrown in because I deserve them!
Why Do I feel that I am a Spirited Woman?
I am a Spirited Woman because I draw upon the power that I have within me to live the best life that I possibly can with metastatic breast cancer. I acknowledge the challenge I face and the difficulties that breast cancer places in my life. But I work very hard not to allow it to consume me. And for each attack it launches upon me, I retaliate. I reassess my strategy and develop a new plan. I make cancer fight for every little thing it takes from me. I do not give cancer any credit for bringing positive things to my life. I create the good in my life. Any strength or courage that people might see in me is mine.
THANK YOU TRACY FOR GIFTING US ALL WITH YOUR LIFE
Tracy welcomes hearing from you. She invites you to follow her continuing story at http://fstage4.blogspot.com/.
Friday, August 1, 2008
The Spirited Woman
Do you try to be your own biggest fan, respect the value and power of your spirit and embrace the amazing soul that you are? Well, sister, you are not alone. Nancy Mills is the creator of the Spirited Woman Approach to Life. She has taught her Spirited Woman workshop to hundreds of women in cities across the country, plans events for like-minded women, recently organized a group of Spirited Woman bloggers, and has a free monthly Spirited Woman E-Newsletter. I think you should check out the Spirited Woman Web site to find out more. And, also, because next month's newsletter contains a feature on a particularly spirited woman. Or, so I hear.
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