After just spending the last 8 days nursing a nasty flu, I admit that I am not my usual eager self when it comes to my traditional Christmas Eve blog post. Usually I am feeling quite spiritual, loving and benevolent by this point but after coughing my brains out for over a week and barely getting any sleep at night the only thing I'm really feeling is...tired.
I've been trying hard to focus on my blessings over the past year and not my disappointments. I truly AM grateful for the progress on my health; for the joy of my daughter; for the achievements of my children; and for the precious gift of Addison. After the difficult year that was 2011 we jokingly dubbed 2012 "the year that no one is allowed to die" in our family - and no one did. So there is that as well (yes, I know that there are 6 more days in 2012 - I'm going to call it a win right now though). But truth be told, I am struggling to stay positive.
Perhaps I am just aware of the toll that chemo is taking on my body. I no longer recover as quickly between cycles - I miss the energy I used to have. Perhaps I am resentful of the continued need to be the sole financial support of our family. I no longer have expectations of "retirement" or even a slowing-down when my disease overtakes me. Perhaps I am still grieving the loss of family, the loss of my job, the relocation of my best friend far away from me - the last few months just seem to be particularly stressful (and aren't they stressful anyway as the time between Thanksgiving and Christmas whirls by?). Perhaps I am just nervous about starting a new job with a new company and a new boss and new colleagues and new rules and requirements. The first few weeks at times seemed overwhelming with respect to material to learn.
And so you will forgive me if I am less than elegant in the writing of this missive. If I appear less than able to be heartfelt, generous and passionate in my thoughts. If I spend less time enumerating all my blessings...and more time indulging in some selfish soliloquies. I'm not oblivious to the hurt out there in the world - I too was brought to tears by Newtown, by the devastation of Sandy, by the random acts of violence in the world. And I too pray for these victims and recognize that whatever my disappointments are, they are small compared to others. But they are disappointments...and I hope that I can overcome feeling badly because quite frankly I don't know what I'll do if I can't stem the tide of sadness.
It is Christmas Eve. Time for me to focus on "the reason for the season" and to pray both for peace in this world and peace in my soul.
Blessings and Love to All.
Monday, December 24, 2012
Monday, November 12, 2012
Movin' Out/Movin' On
A visit to the onc today - routine (although...are they ever really routine?). Got my infusion of Zometa and discussed my chemo regimen - we are reducing the dosage a little bit in order to improve the hand and foot syndrome side effects. Also talked about the fact that folate/folic acid can increase the toxicity of the Xeloda and therefore should be ingested in moderation so...not as much pasta and rice in the old diet (hey as long as I can still have my McDonald's chicken nuggets I'm OK). Most interestingly - the first question he asked was about how the job search was going (more on that later in this post). How refreshing to have an onc that doesn't immediately see me with a big "C" on my head (or worse, ONLY sees me with a big "C" on my head).
I do find it just a little bit amazing (and, truth be told, a little disconcerting) to realize that I have spent the past year on chemotherapy. On the one hand, I am grateful for the obvious benefits; on the other hand, I can't help but wonder what wild and woolly effects it is having on all the healthy tissue in my body, especially since I've been through the whole chemo thing 3 other times during the course of this disease. Can all this poison REALLY be good for my heart? My brain? My liver? Will I be one of those who succumbs to "complications from cancer treatment" rather than the cancer itself? And can you tell by these crazy thoughts that, yes, I am in the middle of one of my "two-weeks-on" courses of the drug right now? Ah, the bliss of "off weeks" when I return to my normal, positive thinking!
Back to real life. It has been a month of turmoil, upheaval, instability and drastic change (and that's just the Giants and Jets). Seriously though, the company that I worked for for 27 years finally called it a day on October 4th, when all of the remaining employees, including myself, were severed. A day later I was in Chicago on a job interview with BP, for a position on Long Island. A week later, I was driving cross-country with one of my best friends, Patti, moving her from New York back to her home state of Indiana after she, too, was let go by our company. Two weeks later I was working on a contract basis for the start-up the former owners of my company created - at half my salary and no benefits. Three weeks later I had a job offer from BP at 60% of my former salary (but with excellent benefits). A month later we were in the dark, as a result of Hurricane Sandy.
The loss of my job was difficult, but not nearly as difficult as understanding how much more Patti lost. Her Dad died a mere 10 days before the company let us go (with no severance and no COBRA by the way, although COBRA is now being offered). She lost him, she lost her job, she lost her health insurance, she lost her home (by moving back to Indiana) and she lost her friends from New York (who she will only get to see sporadically now). And while she did gain much (so much family in and around her hometown, not to mention tailgate parties in South Bend), it was truly heartbreaking to see her pain and anguish over all that she left behind. After spending most of the first day unpacking, organizing and setting up the home she had planned to share with her Dad, but will now live in alone, we got to share one perfect day together before I left to go back to New York, visiting her beloved Notre Dame campus - we took photos of "Touchdown Jesus" outside the football stadium, we said a prayer in the basilica, we lunched in the Legends restaurant, and we marveled at the beauty of the campus. OK, we also spent an hour in the bookstore buying Fighting Irish regalia but c'mon when do I ever go anyplace without shopping? I have missed her every day since I left.
I will be starting at BP on December 3rd, in the position of Regional Account Executive, working with the business owners of 40-50 service stations in Nassau County. While it is not a job at the level I was at with Getty, it IS a job that holds appeal for me as I will have the opportunity to work with what appears to be a very skilled team as well as for a company that has broad interests and well-developed systems. I've had a very positive experience during the whole interview and pre-employment processes and so my expectation is that I will continue to have the same as an employee. While it is true that, given my personal situation, I would have preferred not to work at all, in reality that is not an option for me - gotta pay the bills right? And - bonus! - the occasional foray out to the corporate offices in Chicago may well afford me the opportunity to see Patti more often than might otherwise be the case. One can only hope!
The hurricane (or "superstorm" as some are wont to call it) did not wreak as much havoc on our household as on so many others. Out of power for six days, we managed to keep it together during that time with heat, hot water and refrigeration courtesy of our generator. We did lose a major branch from my favorite tree - but fortunately it did not hit the house, the cars, or any persons foolish enough to be out in the storm. We pray, with all of you, that all who continue to be affected are soon able to get back to their daily lives with needed food, clothing, shelter, and transportation.
We have seen such generosity in friends and neighbors towards those devastated by Sandy, such an outpouring of love and faith, such a giving spirit from so many. Now that the election is over, I'm hoping this can be channeled into all of us working together for the betterment of our country as well. Whatever your politics, let's keep strong the knowledge that we are ALL Americans first and foremost.
A few shout-outs: to Jim (who turned 90 years old last week and doesn't appear to be a day over 60!); to Donna (who is fighting hard yet again to beat back the devil inside); to MJ and Jill and NYBlue for Pink (who are tireless in their devotion to eradicating the beast); to Alicia (who is proving to be an extraordinary mother as well as an amazing cousin); and to Caralyn (who appears to have a limitless supply of compassion for those both less fortunate AND more fortunate).
Blessings and Love to All!
I do find it just a little bit amazing (and, truth be told, a little disconcerting) to realize that I have spent the past year on chemotherapy. On the one hand, I am grateful for the obvious benefits; on the other hand, I can't help but wonder what wild and woolly effects it is having on all the healthy tissue in my body, especially since I've been through the whole chemo thing 3 other times during the course of this disease. Can all this poison REALLY be good for my heart? My brain? My liver? Will I be one of those who succumbs to "complications from cancer treatment" rather than the cancer itself? And can you tell by these crazy thoughts that, yes, I am in the middle of one of my "two-weeks-on" courses of the drug right now? Ah, the bliss of "off weeks" when I return to my normal, positive thinking!
Back to real life. It has been a month of turmoil, upheaval, instability and drastic change (and that's just the Giants and Jets). Seriously though, the company that I worked for for 27 years finally called it a day on October 4th, when all of the remaining employees, including myself, were severed. A day later I was in Chicago on a job interview with BP, for a position on Long Island. A week later, I was driving cross-country with one of my best friends, Patti, moving her from New York back to her home state of Indiana after she, too, was let go by our company. Two weeks later I was working on a contract basis for the start-up the former owners of my company created - at half my salary and no benefits. Three weeks later I had a job offer from BP at 60% of my former salary (but with excellent benefits). A month later we were in the dark, as a result of Hurricane Sandy.
The loss of my job was difficult, but not nearly as difficult as understanding how much more Patti lost. Her Dad died a mere 10 days before the company let us go (with no severance and no COBRA by the way, although COBRA is now being offered). She lost him, she lost her job, she lost her health insurance, she lost her home (by moving back to Indiana) and she lost her friends from New York (who she will only get to see sporadically now). And while she did gain much (so much family in and around her hometown, not to mention tailgate parties in South Bend), it was truly heartbreaking to see her pain and anguish over all that she left behind. After spending most of the first day unpacking, organizing and setting up the home she had planned to share with her Dad, but will now live in alone, we got to share one perfect day together before I left to go back to New York, visiting her beloved Notre Dame campus - we took photos of "Touchdown Jesus" outside the football stadium, we said a prayer in the basilica, we lunched in the Legends restaurant, and we marveled at the beauty of the campus. OK, we also spent an hour in the bookstore buying Fighting Irish regalia but c'mon when do I ever go anyplace without shopping? I have missed her every day since I left.
I will be starting at BP on December 3rd, in the position of Regional Account Executive, working with the business owners of 40-50 service stations in Nassau County. While it is not a job at the level I was at with Getty, it IS a job that holds appeal for me as I will have the opportunity to work with what appears to be a very skilled team as well as for a company that has broad interests and well-developed systems. I've had a very positive experience during the whole interview and pre-employment processes and so my expectation is that I will continue to have the same as an employee. While it is true that, given my personal situation, I would have preferred not to work at all, in reality that is not an option for me - gotta pay the bills right? And - bonus! - the occasional foray out to the corporate offices in Chicago may well afford me the opportunity to see Patti more often than might otherwise be the case. One can only hope!
The hurricane (or "superstorm" as some are wont to call it) did not wreak as much havoc on our household as on so many others. Out of power for six days, we managed to keep it together during that time with heat, hot water and refrigeration courtesy of our generator. We did lose a major branch from my favorite tree - but fortunately it did not hit the house, the cars, or any persons foolish enough to be out in the storm. We pray, with all of you, that all who continue to be affected are soon able to get back to their daily lives with needed food, clothing, shelter, and transportation.
We have seen such generosity in friends and neighbors towards those devastated by Sandy, such an outpouring of love and faith, such a giving spirit from so many. Now that the election is over, I'm hoping this can be channeled into all of us working together for the betterment of our country as well. Whatever your politics, let's keep strong the knowledge that we are ALL Americans first and foremost.
A few shout-outs: to Jim (who turned 90 years old last week and doesn't appear to be a day over 60!); to Donna (who is fighting hard yet again to beat back the devil inside); to MJ and Jill and NYBlue for Pink (who are tireless in their devotion to eradicating the beast); to Alicia (who is proving to be an extraordinary mother as well as an amazing cousin); and to Caralyn (who appears to have a limitless supply of compassion for those both less fortunate AND more fortunate).
Blessings and Love to All!
Thursday, September 20, 2012
Good Times, Bad Times
Shall we start with good times?
Another PET Scan (this one at the end of August - yes, I KNOW I'm very late informing you all), another good result. Most of the tumors are "a little less bright" (onc-speak for shrinking in size) and the large one in my shoulder is staying about the same size. We discussed the possibility of "zapping it" (more onc-speak), i.e. radiating it, but it doesn't hurt and it isn't growing so we decided to leave it for now. Blood work continues to look good, we're staying on the current chemo regimen (which, believe it or not, I have been on for almost a year now), and I probably won't have to have another scan until early next year. I continue to tolerate well the medication - tiredness/fatigue and a bit of irritability at the end of a cycle, but otherwise no major side effects.
Want more good? My cousin Blake, whom you read about in a previous post, came home from the hospital in late August and continues to recover from the Lemierre's infection (totally nasty one that!). What an ordeal that kid and his family went through and what wonderful support they received from all corners of their lives. Blake is back in school and although he continues to have some restrictions, he looks to be on the mend permanently. And hey - while in the hospital...he DID get a visit from King Felix (with a swag bag!).
All that being said, tough times lie ahead for DL and family (did I really just refer to myself in the third person?). For the first time in 35 years, I am going to be unemployed. Getty Petroleum, my employer for the last 27 years, is liquidating under a Chapter 11 bankruptcy proceeding - my last day is October 4th. I suppose it would be a little more bearable if we employees weren't losing so much - health insurance (no COBRA under a bankruptcy), life insurance, minimal severance (about 30% of what we should have expected), the loss of all accumulated paid time off (not an insignificant amount for most of us), the loss of close friends, and of course, the loss of our salaries, bonuses and any other compensation. And, as most of you know, I have been the primary provider in our household so financially it will be supremely challenging.
Given my health situation and the unknown prognosis for my disease I would certainly prefer not to work (or at least not to work as hard as I have for the past 35 years). With a mortgage and tuition and bills to pay though, that is not an option, so I have begun the sometimes tedious process of searching for a job, both in my field and outside of it (hey why not look at this as an opportunity to explore options I've dreamed about like working in College Admissions or Career Counseling). It's certainly a difficult market to begin a job search (as many of you DO know, having gone through it recently yourselves) and I clearly present some unusual challenges - my age (c'mon we all know employers DO consider that even when they say they don't) and my obvious facial disfigurement, which is probably less noticeable than I believe and more noticeable than any of you LEAD me to believe and which, let's face it (no pun intended ha ha) is going to cause a couple of potential employers to (unconsciously at least and consciously at worst) reject my candidacy for a position. I'm confident about my skills, my qualifications, my ability to freakin' NAIL an interview - but I'm sad (and yeah, a little bit angry) that I even have to undertake this task at this stage in my life.
I'm not looking to boo-hoo the bad times before they even arrive though so let's end this with more good shall we? In late August, our Tabolt family got to celebrate the 80th birthdays of my mother-in-law Carole and my father-in-law Roger. Kids, grandkids, great-grandkids, friends, relatives and neighbors all came to honor a truly remarkable pair whose extraordinary love for each other over the years inspires us all. They are not without their own challenges, but they meet them together with love, courage and a deep and abiding respect for each other. We should all be so blessed.
Blessings and Love to All.
Another PET Scan (this one at the end of August - yes, I KNOW I'm very late informing you all), another good result. Most of the tumors are "a little less bright" (onc-speak for shrinking in size) and the large one in my shoulder is staying about the same size. We discussed the possibility of "zapping it" (more onc-speak), i.e. radiating it, but it doesn't hurt and it isn't growing so we decided to leave it for now. Blood work continues to look good, we're staying on the current chemo regimen (which, believe it or not, I have been on for almost a year now), and I probably won't have to have another scan until early next year. I continue to tolerate well the medication - tiredness/fatigue and a bit of irritability at the end of a cycle, but otherwise no major side effects.
Want more good? My cousin Blake, whom you read about in a previous post, came home from the hospital in late August and continues to recover from the Lemierre's infection (totally nasty one that!). What an ordeal that kid and his family went through and what wonderful support they received from all corners of their lives. Blake is back in school and although he continues to have some restrictions, he looks to be on the mend permanently. And hey - while in the hospital...he DID get a visit from King Felix (with a swag bag!).
All that being said, tough times lie ahead for DL and family (did I really just refer to myself in the third person?). For the first time in 35 years, I am going to be unemployed. Getty Petroleum, my employer for the last 27 years, is liquidating under a Chapter 11 bankruptcy proceeding - my last day is October 4th. I suppose it would be a little more bearable if we employees weren't losing so much - health insurance (no COBRA under a bankruptcy), life insurance, minimal severance (about 30% of what we should have expected), the loss of all accumulated paid time off (not an insignificant amount for most of us), the loss of close friends, and of course, the loss of our salaries, bonuses and any other compensation. And, as most of you know, I have been the primary provider in our household so financially it will be supremely challenging.
Given my health situation and the unknown prognosis for my disease I would certainly prefer not to work (or at least not to work as hard as I have for the past 35 years). With a mortgage and tuition and bills to pay though, that is not an option, so I have begun the sometimes tedious process of searching for a job, both in my field and outside of it (hey why not look at this as an opportunity to explore options I've dreamed about like working in College Admissions or Career Counseling). It's certainly a difficult market to begin a job search (as many of you DO know, having gone through it recently yourselves) and I clearly present some unusual challenges - my age (c'mon we all know employers DO consider that even when they say they don't) and my obvious facial disfigurement, which is probably less noticeable than I believe and more noticeable than any of you LEAD me to believe and which, let's face it (no pun intended ha ha) is going to cause a couple of potential employers to (unconsciously at least and consciously at worst) reject my candidacy for a position. I'm confident about my skills, my qualifications, my ability to freakin' NAIL an interview - but I'm sad (and yeah, a little bit angry) that I even have to undertake this task at this stage in my life.
I'm not looking to boo-hoo the bad times before they even arrive though so let's end this with more good shall we? In late August, our Tabolt family got to celebrate the 80th birthdays of my mother-in-law Carole and my father-in-law Roger. Kids, grandkids, great-grandkids, friends, relatives and neighbors all came to honor a truly remarkable pair whose extraordinary love for each other over the years inspires us all. They are not without their own challenges, but they meet them together with love, courage and a deep and abiding respect for each other. We should all be so blessed.
Blessings and Love to All.
Friday, August 10, 2012
Save A Prayer
His name is Blake. He is 17 years old. He is my cousin, the middle son of my cousin and best friend Lisa. And he is in the fight of his life right now.
Blake was recently diagnosed with Lemierre's Syndrome. Never heard of it? Neither had any of us - that is how rare it is. In fact, it's nickname is "the forgotten disease" because it's incidence is about .8 cases per million in the general population. In simple terms, it's a bacterial infection that has landed Blake in the ICU unit at Children's Hospital in Seattle since last Friday where he remains while he battles multiple symptoms associated with the disease.
He has pneumonia. His kidneys and liver were enlarged but are functioning better than they were a week ago. He is on a respirator for a good part of each day (maybe an hour break once a day) because they need to stabilize his breathing in order to continue diagnosis and treatment. He has blood clots for which he is taking Heparin and painful abscesses in his left wrist and (possibly) other places - MRI's are needed to find this out, but can't be done until his breathing is stabilized. He is on antibiotics for the infection but they are working slowly because it is so widespread. He has the strep virus in his blood. He is, in short, a very sick young man.
Lemierre's, as you have surmised, is a nasty infection. The bacteria that causes it (Fusobacterium necrophorum for you "House" fans) exists in all our bodies and is usually "awakened" by some sort of trauma. It typically affects young, healthy adults (unfair!!), develops most often after a sore throat caused by a strep bacteria creates an abscess near the tonsils. The bacteria flourish, penetrate the abscess into the nearby jugular vein in the neck, cause an infected clot (thrombosis) to form, and the bacteria are then off to the races, seeding the body through the bloodstream to metastasize into different organs. Believe it or not, all of this ends up producing initial symptoms that mimic a flu or stomach virus - sore throat, fever, abdominal pain, diarrhea, nausea, vomiting, general body weakness. Hence the difficulty sometimes in diagnosing it - thank God the doctors at Children's did it so quickly. It is treatable/cureable with early diagnosis.
That's not to say the path to health will be easy for Blake. We are talking WEEKS of treatment and healing both in the hospital and out of it. He was to start high school as a senior in a few weeks. He skateboards and skis and snowboards and snorkels and plays football. And while we all know that a few years from now this ordeal, this fight will be a distant memory for him - for now it is depressing and sorrowful for him to know that his life as he imagined it would be for the time being is upended. He will be grateful to be alive - but he is 17 and will mourn that which he is missing each day for the rest of the summer and the beginning of the school year. We mourn along with him.
Blake is a fighter, though, and he is surrounded by an amazingly strong contingent of family and friends who love him and fight along with him. Lisa (his mother) and Mark (his father) are exhausted, but determined to see their son back to health along with Bradley and Beau (his brothers). Blake's grandparents, aunts, uncles, cousins, friends, and classmates keep him in their prayers and will stick by him on the long road ahead. He will progress daily, he will win, and we will cheer his recovery.
You have all been so generous in your prayers for me but now I need you to save a prayer, save MANY of your prayers for Blake and his family. He is 17, his life is just beginning, he is loved by so many and we need to help him in this fight. Thankfully, I know I can call on all of you to step up to the plate and pray that he heals quickly.
Blessings and Love to All - but mostly to Blake from "Cousin Auntie Donna."
Wednesday, July 11, 2012
Come Fly With Me
It wasn't on my bucket list - but it probably should have been!
When my friend Jill (or as she is otherwise known - "The amazing, awesome and adventurous Jill Fanuzzi!") casually mentioned a few months ago that she was going to go trapezing as one of her "bucket list" items, I enthusiastically (and perhaps rashly) offered to accompany her. As we approached the New York City Trapeze School from Houston St., we gazed up at the apparatus, sitting atop a 3-story building over West St., the traffic whizzing by, the platform another 23 feet up above the roof, the under-construction Freedom Tower in evidence before us, and excitedly made our way up to "class."
A mere 10 minutes of instruction later, I was climbing the ladder, strapping on the harness (with the lovely Amelia's help), grabbing the trapeze bar, and waiting for the call of "Ready! Hep!" from the spotter, Hal, below. And so...I jumped. And swung. And hung down from my knees. And flew.
Minutes later it was Jill's turn and she fearlessly, with purpose and grace (yeah, she doesn't think so, but she sure did look graceful), performed the same daring feat. Then did it again.
We learned to soar and hang by our knees, to do a somersault dismount, to let go and be caught by James, he of the beautiful blue eyes. Our adrenaline pushed us up that ladder again and again. Our hands got chalky and raw, our legs got shaky and rubbery, the backs of our knees got bruised, we used muscles we didn't even know we had, we smiled widely each time we curled ourselves out of the safety net after a successful dismount. And when it was all over, we looked at the pictures of ourselves flying and we knew we had done a good thing for our bodies and for our souls.
It is a week later and I still think of the powerful impact this simple adventure has had on me. I had a follow up appointment with my jaw surgeon today and couldn't resist showing him the pictures of what I can do just 3 years after that incredible surgery (yeah, he's probably thinking "Damn, I'm good!"). I'll show the same pictures to my oncologist tomorrow, when I have another routine follow-up visit with him. To show that I'm not just living - I'm LIVING.
There is a lot of cool stuff that's happened in the past few weeks (Emily's 23rd birthday, Addison's 1st birthday - did it really go that fast? - a mini-vacation with Warren to Cooperstown) and more to come (my first NASCAR race in New Hampshire, visiting Stephane, the Lou Avenue Block Party). There have been some ups and downs (um, no pun intended there) too during this time, but overall, in my heart - I'm still flying.
Blessings and Love to All.
Friday, June 15, 2012
Beast of Burden
It has not been easy lately to post to this blog as I have been veering between being too happy and involved with life's opportunities and being too stressed and overwhelmed by life's obstacles to sit and put it all down on paper. Plus, I tend to resist indulging in "pity-blogging" because more often than not, by the time y'all get to read it I'm beyond the feeling bad or mad or sad part. But I have been feeling somewhat burdened lately and perhaps it's wise to let it all out rather than keep it festering inside. OK that might be a little strong, it makes it sound like I'm going to explode. I'm not. Yet.
I'm not even sure I can adequately put into words what I'm feeling - at least not without hurting some feelings and ruffling some feathers and risking some tears (umm, not mine. I don't cry. Much.). The best way I can put it is to say, "Why must everyone make things harder for me instead of making things easier for me?" I'm not one for playing the "cancer card" (well...not OFTEN) but every once in awhile I think "Can I PLEASE get a little help here?"
Don't get me wrong - I get a lot of help. Prayers, support, good wishes, cupcakes - it is all very much needed and appreciated (yeah, especially the cupcakes!). And I don't for one minute doubt that when I start to deteriorate physically that I will be surrounded by many who will want to care for my every need, who will love me and hold my hand and make my final journey peaceful and loving. And perhaps this is my own fault - I have been so strong throughout this (or so I am told), that maybe when I say to someone, a family member or friend, "I need help," providing it is viewed as optional. I think I have been specific in the kinds of help I do need though - less stress (financial, emotional and physical) and more peace in my life in order to really enjoy the time I do have left. And lately, it's just not there.
It isn't all on me - but it feels like it recently. It makes me want to say "Suck it up people! I've had to!" And I do find myself getting just a little angry and resentful when the peace and happiness I had generally been feeling is snatched away, when someone's actions (or inactions) cause increased agitation over and above the everyday stress we all feel in this crazy old world. Truly it makes me want to abandon the life I have, cash out my 401(K) and spend my final years blissfully alone.
But...but...I have obligations. I have commitments. I have people at work, at home, at church, and in the world depending on me, sick or no. I have bills to pay, I have assignments to complete, I have the work of life that needs to be done. I have so much love for ALL the people in my life both when they lift me up and also when they let me down. And every once in awhile...I have the right to bitch and moan about the burdens, real and imagined, placed on me and I have the right to express my longing for an easing of same.
I know many of us believe that God does not give us more than we can handle - but don't even imagine that He's not going to hear from me as well on this!
Blessings and Love to All.
I'm not even sure I can adequately put into words what I'm feeling - at least not without hurting some feelings and ruffling some feathers and risking some tears (umm, not mine. I don't cry. Much.). The best way I can put it is to say, "Why must everyone make things harder for me instead of making things easier for me?" I'm not one for playing the "cancer card" (well...not OFTEN) but every once in awhile I think "Can I PLEASE get a little help here?"
Don't get me wrong - I get a lot of help. Prayers, support, good wishes, cupcakes - it is all very much needed and appreciated (yeah, especially the cupcakes!). And I don't for one minute doubt that when I start to deteriorate physically that I will be surrounded by many who will want to care for my every need, who will love me and hold my hand and make my final journey peaceful and loving. And perhaps this is my own fault - I have been so strong throughout this (or so I am told), that maybe when I say to someone, a family member or friend, "I need help," providing it is viewed as optional. I think I have been specific in the kinds of help I do need though - less stress (financial, emotional and physical) and more peace in my life in order to really enjoy the time I do have left. And lately, it's just not there.
It isn't all on me - but it feels like it recently. It makes me want to say "Suck it up people! I've had to!" And I do find myself getting just a little angry and resentful when the peace and happiness I had generally been feeling is snatched away, when someone's actions (or inactions) cause increased agitation over and above the everyday stress we all feel in this crazy old world. Truly it makes me want to abandon the life I have, cash out my 401(K) and spend my final years blissfully alone.
But...but...I have obligations. I have commitments. I have people at work, at home, at church, and in the world depending on me, sick or no. I have bills to pay, I have assignments to complete, I have the work of life that needs to be done. I have so much love for ALL the people in my life both when they lift me up and also when they let me down. And every once in awhile...I have the right to bitch and moan about the burdens, real and imagined, placed on me and I have the right to express my longing for an easing of same.
I know many of us believe that God does not give us more than we can handle - but don't even imagine that He's not going to hear from me as well on this!
Blessings and Love to All.
Friday, May 4, 2012
What Doesn't Kill You (Stronger)
Well...it hasn't killed me, so...
Yes, the months of chemo appear to be paying off. I got the results of my latest PET scan yesterday and they are much better than the ones from 3 months ago (and those weren't too shabby). My onc was actually so excited he could hardly contain himself. He walked into the patient room, asked me how I was feeling, and I barely got the words "I'm feeling pretty good" out before he blurted "Your PET scan results are great!" With, I might add, a big ole s**t-eating grin on his face, as though HE was the one getting good news. Which, I suppose he is as well.
Here's the lowdown: Almost all of the tumors in my lymph nodes have completely resolved (disappeared); the tumors in my bones have stayed stable (if you recall, most of those shrank last time around); no new tumors have appeared (and no major organ involvement); and my tumor markers have plummeted (cue the onc waving the graph at me showing the big inverted "V"). Best of all - no change in medication. Which, truth be told, is my real short-term fear. I admit it - I've grown to love my long hair again! I still have to stick with my current chemo regimen - not horrible, but no picnic either. Most of the time, though, I get to enjoy life as I'd like to.
It feels good to get news like this. I'm not oblivious to the fact that at some point this medication will stop working (and every so often I pause and think to myself "Eventually this WILL lead to a place I'm not ready to go to") but this really does feel like the best news I've gotten in a long time. I breathe a deep sigh of relief and relish the reprieve from worry and give myself over to making some plans for the (near) future - Trapezing with Jill! Mother's Day with Taryn! Addison's first birthday! The block party! A closetful of new shoes! (OK maybe just a pair or two). Of course this is all contingent upon the trapezing not killing me first.
I find it amazing sometimes how much hope remains within me, hope for a complete cure or extended remission. I actually felt a little giddy (well, if you want to call loudly woo-hooing on the phone with Lisa "giddy"). I realize that the reactions to this news are part of what gives me so much hope - all those "likes" in response to my status on Facebook, all those unseen smiles of family and friends that I called to share the news with, all those small gestures of joy (thanks for the beautiful roses Patti!) really do make me smile and feel optimistic about my chances. That's a feeling not easily killed off even by the realities of my disease. As much as doctors and medications - you guys share some of the credit for keeping me alive. And so I go on, feeling good and for a short while at least feeling stronger.
Blessings and Love to All.
Yes, the months of chemo appear to be paying off. I got the results of my latest PET scan yesterday and they are much better than the ones from 3 months ago (and those weren't too shabby). My onc was actually so excited he could hardly contain himself. He walked into the patient room, asked me how I was feeling, and I barely got the words "I'm feeling pretty good" out before he blurted "Your PET scan results are great!" With, I might add, a big ole s**t-eating grin on his face, as though HE was the one getting good news. Which, I suppose he is as well.
Here's the lowdown: Almost all of the tumors in my lymph nodes have completely resolved (disappeared); the tumors in my bones have stayed stable (if you recall, most of those shrank last time around); no new tumors have appeared (and no major organ involvement); and my tumor markers have plummeted (cue the onc waving the graph at me showing the big inverted "V"). Best of all - no change in medication. Which, truth be told, is my real short-term fear. I admit it - I've grown to love my long hair again! I still have to stick with my current chemo regimen - not horrible, but no picnic either. Most of the time, though, I get to enjoy life as I'd like to.
It feels good to get news like this. I'm not oblivious to the fact that at some point this medication will stop working (and every so often I pause and think to myself "Eventually this WILL lead to a place I'm not ready to go to") but this really does feel like the best news I've gotten in a long time. I breathe a deep sigh of relief and relish the reprieve from worry and give myself over to making some plans for the (near) future - Trapezing with Jill! Mother's Day with Taryn! Addison's first birthday! The block party! A closetful of new shoes! (OK maybe just a pair or two). Of course this is all contingent upon the trapezing not killing me first.
I find it amazing sometimes how much hope remains within me, hope for a complete cure or extended remission. I actually felt a little giddy (well, if you want to call loudly woo-hooing on the phone with Lisa "giddy"). I realize that the reactions to this news are part of what gives me so much hope - all those "likes" in response to my status on Facebook, all those unseen smiles of family and friends that I called to share the news with, all those small gestures of joy (thanks for the beautiful roses Patti!) really do make me smile and feel optimistic about my chances. That's a feeling not easily killed off even by the realities of my disease. As much as doctors and medications - you guys share some of the credit for keeping me alive. And so I go on, feeling good and for a short while at least feeling stronger.
Blessings and Love to All.
Tuesday, April 3, 2012
Brighter Than The Sun
There is nothing that causes my heart to flip flop more than the thought or sight of my beautiful daughter (no...not even the perfect pair of Christian Louboutin's). When I think about what I've done in this world, what I've contributed, what kind of person I am, what I've accomplished either personally or professionally, where I have traveled, whose lives I have in some way touched, and what awaits me at the end of my journey I always come to the same conclusion. Everything, EVERYTHING - good or bad - is worth it because of her.
If they told me that I was guaranteed a long, healthy, cancer-free life but that I would have to give up ever having Taryn, I would decline. I have a lot of loving individuals in my life - family, friends, neighbors - but none so light up my world as Taryn does. As we celebrated her 21st birthday this weekend, I was reminded over and over again how brightly her star burns in my world.
That joyful face you see above? That is what I live to see, and on occasion it tortures me to think that my illness and its inevitable outcome cloud that joy. Fortunately, we were able to put all of that aside while we celebrated her passage into adult womanhood (or, more correctly, her passage into the various bars and pubs of College Park!). Chris, Bruce and I sprang for an open-bar party for her and her friends at a local watering hole (call it Galaganza II if you will) Saturday night and watched happily as she was toasted and feted and cheered by her friends. She was thrilled to have out-of-town family there (Lisa, Warren, John, Jeanne, Ian, Patti and Patty) - well, as long as we stayed in our corner of the bar (just kidding - she was proud to introduce us to her friends and vice versa). She was absolutely luminous in a sequined dress and sparkly tiara and sky-high heels. She was full of brilliant smiles, infectious giggles, funny jokes, and impish camera poses. She blushed when, at the end of the night, her friends broke out into a spontaneous and loud rendition of "Happy Birthday" and she fiercely hugged all of us and declared her love and appreciation as the night wound down for the "grown-ups" (truth be told, we had probably had enough shots by then anyhow - we now know why them call them "Woo-Woos").
As for me...I am profoundly grateful that I got to enjoy another of my daughter's birthdays. I am refreshed after a weekend of her sunlit smiles. And I am proud and privileged to be Taryn's mother - for in my life, she truly blazes brighter than the sun. As Jeannie would say - "That's lucky!"
Blessings and Love to All.
Friday, March 9, 2012
Southern Comfort
Waterlogged we may have been, but the group you see at left could not have been more excited for we were spending the weekend together in beautiful Charleston, SC. It was windy and rainy (at least on our Harbor tour) - but the dolphins were out and the Bloody Marys were just the right amount of spicy!After many years of Girls Night Out dinners in NYC, we finally got our butts in gear and planned our Girls' Weekend to coincide with the Food and Wine Festival in this historic city (Food? Wine? How could we NOT attend?). This charming city offered us glimpses of its antebellum past (through a plantation visit and a carriage ride through the Harleston area) as well as the enjoyment of its current plentiful treasures (like the quirky and colorful Charleston Market). We found new loves - shrimp and grits, Firefly sweet tea vodka drinks, and lovely hand-woven baskets. We walked and talked and shopped and drank and learned and laughed. We got to spend time together, we got to spend time in small groups, we got to catch up individually. We even got giddy enough to start planning NEXT year's vacation (St. Patrick's Day in Savannah - Woo-hoo!!).
Admittedly, it wasn't all magnolias and sweet tea. We were missing one of our GNO members (Mary Cannon you better be there next year!); I did get sick enough with a head cold to miss Saturday night dinner (where Jackie somehow managed to spray wine onto the restaurant wall - don't ask!); the rain came down heaviest during the Festival so it was a bit of a madhouse inside the tents; and we didn't get to spend as much time walking the city as we'd have liked. But who can complain when our weekend ended (for most of us) with a cocktail on a rooftop bar bathed in sunshine and with a view of the Charleston rooftops? Cue the sigh of contentment.
For me, I am grateful for the friendship these women provide and for their unique ability to make me forget all about my health troubles. Jackie, Patti, Mary, Patty and Elisa - you truly provided me with Southern comfort last weekend and I remain humbled and blessed by your friendship.
Blessings and Love to All.
Thursday, February 16, 2012
Happy Together
Sometimes (although not often, given my propensity for writing ad nauseum about my life, trials, tribulations, and triumphs) a picture really does say it all.
Blessings and Love to All.
Wednesday, February 1, 2012
Good
The latest PET Scan results are in (I had the test on the 23rd) and they are good. Or great. Or not so good. I'm realizing that at this stage it's all in the perception and interpretation of what constitutes a positive result. Of course for me the fact that I'm still blogging about it counts as a positive result here!
Most of the bone tumors have shrunk. Good! Some of the lymph node tumors have shrunk. Good! Some of the lymph node tumors have grown ever so slightly. Not so good. Some new tumors have sprouted ("Don't worry," says my oncologist, "the new ones aren't in places that will kill you."). Gonna call that not so good anyhow. Some tumors have disappeared. Great! There continues to be no major organ involvement (no lungs, no liver). Great! I won't have to switch to a new chemotherapy regimen, I can stick with the one I'm on. Good?
Given the mixed results, I have to go with what I felt upon hearing the news - happy and relieved. While I do have side effects from the chemo (especially towards the end of the 2-week cycle), they are relatively manageable and I do not look forward to the time when I will have to get used to a new medication (i.e. when this one stops working). And the fact that the cancer remains confined to the bones and lymph nodes gives me hope that the chemo is doing the job to the extent that it needs to, keeping the disease at bay.
Most importantly, other than the chemo side effects I feel well - no pain, good energy (again, except in the last few days of a cycle), blood work is within acceptable (if not normal) levels, and only rare bouts of malaise. Let's call that good.
Also good - being able to look forward to some upcoming events: a visit to Charleston with my girlfriends, my brother's 45th birthday, Taryn's 21st birthday (which, by the way, is turning into a major GALAGANZA). Ah, I do so enjoy my periodic re-entry into the blissful state of denial.
And I now call upon all the wonderful good people in my life to share some of the prayers you generously bestow upon me with these folks: the family of the late Dewey Cox, who mourn the loss of their dear mother and grandmother; Peg, a fellow congregant whose fight against breast cancer eerily mimics my own; and Joan, a faithful blog follower and supporter of mine who has recently been diagnosed with breast cancer. May God give them all the strength and love they need to help them through the difficult times ahead.
Blessings and Love to All.
Most of the bone tumors have shrunk. Good! Some of the lymph node tumors have shrunk. Good! Some of the lymph node tumors have grown ever so slightly. Not so good. Some new tumors have sprouted ("Don't worry," says my oncologist, "the new ones aren't in places that will kill you."). Gonna call that not so good anyhow. Some tumors have disappeared. Great! There continues to be no major organ involvement (no lungs, no liver). Great! I won't have to switch to a new chemotherapy regimen, I can stick with the one I'm on. Good?
Given the mixed results, I have to go with what I felt upon hearing the news - happy and relieved. While I do have side effects from the chemo (especially towards the end of the 2-week cycle), they are relatively manageable and I do not look forward to the time when I will have to get used to a new medication (i.e. when this one stops working). And the fact that the cancer remains confined to the bones and lymph nodes gives me hope that the chemo is doing the job to the extent that it needs to, keeping the disease at bay.
Most importantly, other than the chemo side effects I feel well - no pain, good energy (again, except in the last few days of a cycle), blood work is within acceptable (if not normal) levels, and only rare bouts of malaise. Let's call that good.
Also good - being able to look forward to some upcoming events: a visit to Charleston with my girlfriends, my brother's 45th birthday, Taryn's 21st birthday (which, by the way, is turning into a major GALAGANZA). Ah, I do so enjoy my periodic re-entry into the blissful state of denial.
And I now call upon all the wonderful good people in my life to share some of the prayers you generously bestow upon me with these folks: the family of the late Dewey Cox, who mourn the loss of their dear mother and grandmother; Peg, a fellow congregant whose fight against breast cancer eerily mimics my own; and Joan, a faithful blog follower and supporter of mine who has recently been diagnosed with breast cancer. May God give them all the strength and love they need to help them through the difficult times ahead.
Blessings and Love to All.
Wednesday, January 4, 2012
Vacation
In Hawaii - the skies were blue, the hills were lush and green, the ocean waves were mild, and the sun was warm and inviting.
In Hawaii - the pineapple was succulent, the fish was fresh, the meals were sumptuous, and the Blue Hawaii cocktails were quenching (and intoxicating!).
In Hawaii - the Arizona Memorial was tearfully impactful, the whales were showing their fins, the shopping was fun (and maybe just a little excessive), and the luau was a spectacular sunset show.
In Hawaii - Christmas was spiritual, Christmas was presents, Christmas was an impromptu barbecue, Christmas was family.
In Hawaii - Bruce made us laugh (and sometimes cringe), Taryn and Ian made us proud, the "boys" (Bradley, Blake and Beau) made us admire their daring, Warren made us feel spoiled, and Lisa made us feel special and loved.
In Hawaii - I forgot, for eight glorious days, that I had cancer. Now THAT is a vacation.
Blessings and Love to All.
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