Dear all, this will be a very quick update just to let you know to keep those prayers and good thoughts / mojo coming because evidently they are working. We had our first set of scans last week and got great results! No evidence of disease on the scans which I of course attribute to my new regime of healing QiGong exercises (google it) in response to which Tom rolls his eyes....in a major way! Evidently these straightforward Mid-Western boys don't put much store in what Tom affectionately calls, 'That VooDoo Stuff'.
Anyhoo, The chemo is working! Always a relief. Although I must add that we have now reached a point where the doctors literally look up the scan results on line while we are in the room...Completely shattering all those illusions from Primetime TV where the patient is given plenty of warning of the impending bad news. For now we are just thanking God it was good news because frankly we had our hearts set on rum punch in the Bahama's for my Brother's upcoming wedding...although we didn't tell the doctor that. No sense giving her more to stress over...
Despite my new found faith in the ancient Chinese healing art of QiGong for now we continue with the chemo but for all those keeping up I still have hair...major bonus. Not sure how many more chemo's to go but in the meantime they are reaching out again to my donor in order to get more stem cells so I can get a Donor Lymphocyte Infusion - (google it) basically a boost of stem cells to help me fight any more relapses. Then I think it will be a case of watch and wait for now as we keep praying that this wretched disease disappears forever.
That's all for now as work is keeping me fairly busy, I mean you all may pretend to not like reality TV but lets be honest, you all watch it and frankly it doesn't just make itself you know. As my lovely hubby frequently reminds anyone who dares to turn up their nose at my chosen career (and yes people I am capable of convincing myself it was chosen) it pays the bills thanku very much!
Tuesday, September 29, 2009
Saturday, September 12, 2009
Greetings from Tom
Hello, it’s me the husband for this post. I know you’re all disappointed. Bev did a bang up job on her last post, which is amazing because she’s barely coherent for the most part…can hardly string words together. Just kidding, she’s fine. In fact she is pressuring me to include a Farrah Fawcett, Michael Jackson, Patrick Swayze cancer joke, but I quite frankly have too much class.
So I know what you’re all thinking. “Bev’s got cancer again. What’s it like for you Tom?” Well, I’m glad you asked. Yesterday was our fourth treatment during this stint in cancerland. Yes I say “our” . . . she’s the one having the toxins pushed into her veins, but I’m the one driving damnit. Our drives up to City of Hope in Duarte have been quite nice. They’re our little romantic road trips every two weeks. It’s just under an hour from Marina del Rey up to Duarte. I manage to wake up 15 minutes into the drive (which is good, because I’m driving) to realize that we’re listening to Ryan Seacrest receive shoutouts from all the girls of the Rancho Cucamonga Del Alto Vista Grande High School junior varsity cheerleading squad. Thanks ladies.
On our first treatment at City of Hope (about two months ago), Bev and I spent her infusion in the deluxe private suite. Comfy chair for her, full hospital bed for me, DirecTV…very civilized. Fast forward to the fourth treatment and we’re placed in a broom closet with three other patients. There is a scale for me to play with…I like messing around with the equipment. I know how to work most of the stuff by now. However this time the scale told me I had put on four pounds since the last visit. Time to redouble my efforts on the elliptical.
Back to Bev. We’re quite a good team. We manage to alternate our fits of severe impatience. It’s a teeter-totter version of Good Cop/Bad Cop. We usually get the important things our way. For instance Bev is very good at dictating when, where and by whom her blood will be drawn. She has also made very good friends with the nurse who can best access her port. I think it’s a genuine attempt at polite friendliness on Bev’s part…however, I think the nurses are mainly reacting out of fear. Nurses, doctors, receptionists, schedulers tend not to argue with her. We’re big believers in taking control and owning the process. Don’t just let things happen without knowing why. Ask the questions and demand the answers. Most health professionals seem to respect this approach. There’s one receptionist with wrist guards, a hands-free device and incredible talent of looking very busy while doing nothing who might disagree.
So we’ve now done four chemo treatments since relapsing. Next week is the PET scan which will tell us how effective treatment has been. After that will probably be more chemo leading up to perhaps a Donor Lymphocyte Infusion (look it up) or maybe a clinical trial of some kind. No one is expecting these past four treatments to have sent Bev back into remission, but we’re totally cool if it turns out that way.
Last night I picked up Bev from work around 9:30 pm. That’s right…she put in an 8-hour day in the office after chemo…my wife could kick your ass. Of course if you watched her swallow a single pill you’d think she was being stabbed. She can’t believe I can swallow four ibuprofens at once. Our constant sense of amazement with each other keeps the marriage fresh. But I digress.
Where was I? OK…so it’s 9:30 pm and I’m picking Bev up from work. She comes out to the car with six dozen donuts that went uneaten in the office and were going to be tossed out. Bev, however, decided that we would be giving them to the homeless. I knew that “we” would not be doing this. Just as I suspected, this became “me” chasing a guy with a shopping cart down an alley at 10 o’clock at night as I tried to explain why I had six dozen donuts to give him. I explained that it was my wife’s idea and a look of total understanding came over his face and he seemed to take pity on me as he accepted the donuts and said his buddies could really use some food. My advice to anyone getting married: Don’t be surprised when at some point you share an awkward moment in a dark alley with a homeless stranger…this is what you sign up for when you say “I do.”
So I know what you’re all thinking. “Bev’s got cancer again. What’s it like for you Tom?” Well, I’m glad you asked. Yesterday was our fourth treatment during this stint in cancerland. Yes I say “our” . . . she’s the one having the toxins pushed into her veins, but I’m the one driving damnit. Our drives up to City of Hope in Duarte have been quite nice. They’re our little romantic road trips every two weeks. It’s just under an hour from Marina del Rey up to Duarte. I manage to wake up 15 minutes into the drive (which is good, because I’m driving) to realize that we’re listening to Ryan Seacrest receive shoutouts from all the girls of the Rancho Cucamonga Del Alto Vista Grande High School junior varsity cheerleading squad. Thanks ladies.
On our first treatment at City of Hope (about two months ago), Bev and I spent her infusion in the deluxe private suite. Comfy chair for her, full hospital bed for me, DirecTV…very civilized. Fast forward to the fourth treatment and we’re placed in a broom closet with three other patients. There is a scale for me to play with…I like messing around with the equipment. I know how to work most of the stuff by now. However this time the scale told me I had put on four pounds since the last visit. Time to redouble my efforts on the elliptical.
Back to Bev. We’re quite a good team. We manage to alternate our fits of severe impatience. It’s a teeter-totter version of Good Cop/Bad Cop. We usually get the important things our way. For instance Bev is very good at dictating when, where and by whom her blood will be drawn. She has also made very good friends with the nurse who can best access her port. I think it’s a genuine attempt at polite friendliness on Bev’s part…however, I think the nurses are mainly reacting out of fear. Nurses, doctors, receptionists, schedulers tend not to argue with her. We’re big believers in taking control and owning the process. Don’t just let things happen without knowing why. Ask the questions and demand the answers. Most health professionals seem to respect this approach. There’s one receptionist with wrist guards, a hands-free device and incredible talent of looking very busy while doing nothing who might disagree.
So we’ve now done four chemo treatments since relapsing. Next week is the PET scan which will tell us how effective treatment has been. After that will probably be more chemo leading up to perhaps a Donor Lymphocyte Infusion (look it up) or maybe a clinical trial of some kind. No one is expecting these past four treatments to have sent Bev back into remission, but we’re totally cool if it turns out that way.
Last night I picked up Bev from work around 9:30 pm. That’s right…she put in an 8-hour day in the office after chemo…my wife could kick your ass. Of course if you watched her swallow a single pill you’d think she was being stabbed. She can’t believe I can swallow four ibuprofens at once. Our constant sense of amazement with each other keeps the marriage fresh. But I digress.
Where was I? OK…so it’s 9:30 pm and I’m picking Bev up from work. She comes out to the car with six dozen donuts that went uneaten in the office and were going to be tossed out. Bev, however, decided that we would be giving them to the homeless. I knew that “we” would not be doing this. Just as I suspected, this became “me” chasing a guy with a shopping cart down an alley at 10 o’clock at night as I tried to explain why I had six dozen donuts to give him. I explained that it was my wife’s idea and a look of total understanding came over his face and he seemed to take pity on me as he accepted the donuts and said his buddies could really use some food. My advice to anyone getting married: Don’t be surprised when at some point you share an awkward moment in a dark alley with a homeless stranger…this is what you sign up for when you say “I do.”
Wednesday, September 02, 2009
It's been a while....
Ok, so it has been a while since I posted. I hate to admit this but I think I have been avoiding it...yes my friends that is correct....me...Bev...avoiding something. Honestly, it is not always easy to talk. Sometimes a time out is required.
In boring Cancer news, so far I have had three chemo treatments and all have gone remarkably well considering. Some mouth sores and the usual nausea but apart from that nothing...and when I say nothing I mean I still have my hair. Yes! I hear you all rejoice...(particularly my brother Matt who although fully prepared for 'Bald Bev' pictures at his Bahamian wedding probably dreams of actual hair as much as I do). However I am trying to remain realistic...Oh who am I kidding! Every night I look in the mirror and pray to God that he will spare my hair. Vanity people is a great motivator. I have one more treatment in a week and then a scan to determine the effect. All being well and assuming the wretched Cancer has responded by getting the eff out of there then we will probably do some more chemo (just for shits and giggles) and then we start talking about clinical trial drugs such as SGN-35, (feel free to google) which have been showing great promise and, (Matt you will be glad to hear this) don't result in hair loss!
In other more spiritual news I have been trying to focus on the positive as we deal with more chemo and the possibility of clinical trials with new drugs and have found that although this is difficult sometimes on a day to day basis, when I think long term about my struggle I am as convinced as I ever was that I will beat this. As a result I have become more and more interested in just exactly where this faith and belief comes from? So far I have not come to any earth shattering conclusions but I have uncovered some childhood memories that remind me I may have always been blessed with more than my fair share of a stubborn streak...(no confirmation required from you Tom)....
When I was a kid I was always the one that the family turned to whenever something went missing. As I am sure you can imagine in a house of 6 people things often went missing and it wasn't always that my little brother John had "borrowed" it. I think anyone who has siblings is familiar with what the term "borrowed" actually means. Yes John, that's right...it's called stealing.. Anyway, for some reason I was always the kid tasked with searching for said item. The 'Sherlock Holmes' of my family if you will. I was simply very good at finding things and I was thinking about this just the other day and wondering why. I began to remember how I used to feel as I searched, how I was always absolutely convinced that I would find it no matter how long it took me. I just knew it was there. Somewhere. Invariably I would locate the item and mostly I realize now simply because I refused to give up and I was willing to search longer and in more places than anyone else. Stubbornly refusing to give up the search and admit defeat. I remember WANTING to find it, it was a literal urge I felt. I believed.
I realize now as I think back to how I felt then as a child that I feel the exact same way today when I think about my struggle with Cancer. I have faith that I will beat this just as I had faith I would find that missing hairbrush or sock or belt. The only difference is that today I know that confidence comes from my faith in God. (all readers should feel free to insert their own spiritual guide / motivator / higher power here).
I may no longer be searching for that lost sock or missing wallet, (although every now and again as every wife knows one MUST search for one's husband's 'misplaced' things...it's in the vows. Trust me), but I am searching every day for more meaning in my life and trying to understand the lessons in each struggle Tom and I face.
Again, sadly no earth shattering answers here folks but I will tell you this. I have learned more about friendship and family in the last four years than ever before and I want you all to know that if you are reading this then you have helped to lift Tom and I up EVERY day in some small way whether you know it or not. I actually wanted this blog to be all about you guys and how much we love the way you love us but as my husband Tom so rightly pointed out when I complained of writers block, we cannot always dictate the creative direction of our thoughts and also, quite frankly people, lets keep it real. I have Cancer...It really is all about me.
xoxoxoxox
In boring Cancer news, so far I have had three chemo treatments and all have gone remarkably well considering. Some mouth sores and the usual nausea but apart from that nothing...and when I say nothing I mean I still have my hair. Yes! I hear you all rejoice...(particularly my brother Matt who although fully prepared for 'Bald Bev' pictures at his Bahamian wedding probably dreams of actual hair as much as I do). However I am trying to remain realistic...Oh who am I kidding! Every night I look in the mirror and pray to God that he will spare my hair. Vanity people is a great motivator. I have one more treatment in a week and then a scan to determine the effect. All being well and assuming the wretched Cancer has responded by getting the eff out of there then we will probably do some more chemo (just for shits and giggles) and then we start talking about clinical trial drugs such as SGN-35, (feel free to google) which have been showing great promise and, (Matt you will be glad to hear this) don't result in hair loss!
In other more spiritual news I have been trying to focus on the positive as we deal with more chemo and the possibility of clinical trials with new drugs and have found that although this is difficult sometimes on a day to day basis, when I think long term about my struggle I am as convinced as I ever was that I will beat this. As a result I have become more and more interested in just exactly where this faith and belief comes from? So far I have not come to any earth shattering conclusions but I have uncovered some childhood memories that remind me I may have always been blessed with more than my fair share of a stubborn streak...(no confirmation required from you Tom)....
When I was a kid I was always the one that the family turned to whenever something went missing. As I am sure you can imagine in a house of 6 people things often went missing and it wasn't always that my little brother John had "borrowed" it. I think anyone who has siblings is familiar with what the term "borrowed" actually means. Yes John, that's right...it's called stealing.. Anyway, for some reason I was always the kid tasked with searching for said item. The 'Sherlock Holmes' of my family if you will. I was simply very good at finding things and I was thinking about this just the other day and wondering why. I began to remember how I used to feel as I searched, how I was always absolutely convinced that I would find it no matter how long it took me. I just knew it was there. Somewhere. Invariably I would locate the item and mostly I realize now simply because I refused to give up and I was willing to search longer and in more places than anyone else. Stubbornly refusing to give up the search and admit defeat. I remember WANTING to find it, it was a literal urge I felt. I believed.
I realize now as I think back to how I felt then as a child that I feel the exact same way today when I think about my struggle with Cancer. I have faith that I will beat this just as I had faith I would find that missing hairbrush or sock or belt. The only difference is that today I know that confidence comes from my faith in God. (all readers should feel free to insert their own spiritual guide / motivator / higher power here).
I may no longer be searching for that lost sock or missing wallet, (although every now and again as every wife knows one MUST search for one's husband's 'misplaced' things...it's in the vows. Trust me), but I am searching every day for more meaning in my life and trying to understand the lessons in each struggle Tom and I face.
Again, sadly no earth shattering answers here folks but I will tell you this. I have learned more about friendship and family in the last four years than ever before and I want you all to know that if you are reading this then you have helped to lift Tom and I up EVERY day in some small way whether you know it or not. I actually wanted this blog to be all about you guys and how much we love the way you love us but as my husband Tom so rightly pointed out when I complained of writers block, we cannot always dictate the creative direction of our thoughts and also, quite frankly people, lets keep it real. I have Cancer...It really is all about me.
xoxoxoxox
Friday, July 31, 2009
'There's no use trying,' Alice said. One CAN'T believe impossible things.' "
'I daresay you haven't had much practice,' said the Queen.
'When I was your age, I always did it for half-an-hour a day.
Why sometimes I've believed as many as six impossible things before breakfast.' "
"Alice in Wonderland" - Lewis Carroll
Well, dear friends and family faithful it seems we are here again which is bitter sweet in that I miss connecting with so many of you through this blog and yet I would give anything not to have to resurrect it. But resurrect it we must as this last week following what has been two whole years of remission they discovered more lymphoma back in my lung. Yes folks, that's right, I got a lung biopsy for my birthday followed by a belated gift of Chemo. Once more unto the breach my friends! or, as Winston Churchill once reportedly said...."Never, never, never, never give in". I have included the full quote for all you history 'boffs' out there...."Never give in. Never give in. Never, never, never, never--in nothing, great or small, large or petty--never give in, except to convictions of honour and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy".
We started round one of Chemo today and this will take place over 8 weeks, I get to go every two weeks for treatment and then at the end they will scan me to see if it's working at which point depending on my response they will decide whether or not to give me a little boost of my donor's cells. Its called DLI....Donor Lymphocite Infusion... Feel free to google.. I have of course been banned by the Professor from googling and he is really sticking to that rule this time around! In the meantime there is also lots of talk of various clinical trials and as you can imagine the Professor is not at all interested in investigating any of that stuff......(NOT)!!! Suffice to say his laptop is burning up as we speak!
Of course, I am aware that what all you folks really want to know is how the lovely Tom Self is doing....he's just fine. Joined me for chemo this morning as we resurrected our chemo routine which starts with a very befuddled and confused dog at around 5am looking at us like we are mad followed by copious amounts of coffee for Tom and tea for me and then a 45 minute drive to the hospital as we slowly wake up in time to be jabbed and filled with delightful poison. (just me for that last bit......) ;-) As I have said many times before you should all get yourselves a Tom...can't recommend it enough.
I have also been entertaining myself by compiling a list entitled:
"Why Chemo will be easier in California"
various headings include:
They have valet parking at the new hospital......unbelievable........
We have laundry INSIDE our apartment now......
We don't have to take strange car services to our appointments driven by people with a severely questionable grasp of the English language, zero sense of direction and a propensity for making the Professor car sick....
Tom can drive to the supermarket pretty much whenever I want him to and fill the car with Gatorade and other sundry items essential to a successful Chemo experience.
We have TWO (count them fellow New Yorkers) TWO car parking spaces! Suck it Park Slope!!!
Tom's new bosses actually give a shit....so refreshing....
IT NEVER RAINS HERE AND THE SUN IS ALWAYS SHINING!!!
Humidity??? What's that?.....
We love you all and we need you to send up those good thoughts, prayers, happy Mojo, whatever ya got, we'll take it! We will do our best to update this blog frequently and keep you all in the loop as we continue on our journey.
All our love and laughter
Bev and Tom
'I daresay you haven't had much practice,' said the Queen.
'When I was your age, I always did it for half-an-hour a day.
Why sometimes I've believed as many as six impossible things before breakfast.' "
"Alice in Wonderland" - Lewis Carroll
Well, dear friends and family faithful it seems we are here again which is bitter sweet in that I miss connecting with so many of you through this blog and yet I would give anything not to have to resurrect it. But resurrect it we must as this last week following what has been two whole years of remission they discovered more lymphoma back in my lung. Yes folks, that's right, I got a lung biopsy for my birthday followed by a belated gift of Chemo. Once more unto the breach my friends! or, as Winston Churchill once reportedly said...."Never, never, never, never give in". I have included the full quote for all you history 'boffs' out there...."Never give in. Never give in. Never, never, never, never--in nothing, great or small, large or petty--never give in, except to convictions of honour and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy".
We started round one of Chemo today and this will take place over 8 weeks, I get to go every two weeks for treatment and then at the end they will scan me to see if it's working at which point depending on my response they will decide whether or not to give me a little boost of my donor's cells. Its called DLI....Donor Lymphocite Infusion... Feel free to google.. I have of course been banned by the Professor from googling and he is really sticking to that rule this time around! In the meantime there is also lots of talk of various clinical trials and as you can imagine the Professor is not at all interested in investigating any of that stuff......(NOT)!!! Suffice to say his laptop is burning up as we speak!
Of course, I am aware that what all you folks really want to know is how the lovely Tom Self is doing....he's just fine. Joined me for chemo this morning as we resurrected our chemo routine which starts with a very befuddled and confused dog at around 5am looking at us like we are mad followed by copious amounts of coffee for Tom and tea for me and then a 45 minute drive to the hospital as we slowly wake up in time to be jabbed and filled with delightful poison. (just me for that last bit......) ;-) As I have said many times before you should all get yourselves a Tom...can't recommend it enough.
I have also been entertaining myself by compiling a list entitled:
"Why Chemo will be easier in California"
various headings include:
They have valet parking at the new hospital......unbelievable........
We have laundry INSIDE our apartment now......
We don't have to take strange car services to our appointments driven by people with a severely questionable grasp of the English language, zero sense of direction and a propensity for making the Professor car sick....
Tom can drive to the supermarket pretty much whenever I want him to and fill the car with Gatorade and other sundry items essential to a successful Chemo experience.
We have TWO (count them fellow New Yorkers) TWO car parking spaces! Suck it Park Slope!!!
Tom's new bosses actually give a shit....so refreshing....
IT NEVER RAINS HERE AND THE SUN IS ALWAYS SHINING!!!
Humidity??? What's that?.....
We love you all and we need you to send up those good thoughts, prayers, happy Mojo, whatever ya got, we'll take it! We will do our best to update this blog frequently and keep you all in the loop as we continue on our journey.
All our love and laughter
Bev and Tom
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