Tuesday, September 29, 2009

Quick Update

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!

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.”

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

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

Saturday, September 22, 2007

Departure notes from the Mom and Dad


Greetings everybody from an increasingly autumnal New York City. The weather is still warm and sunny but the trees appear to know something if their falling leaves are any indicator. Brooklynites are sweeping them into little piles each day as we walk up to the subway en route to see Beverley. So the leaves are 'leaving' and so are we.

Our job here is done as someone famous probably said, and we are homeward-bound on 1 Oct (Matthew and John's birthday incidentally, but that's not the reason we're fleeing the scene). Following our 30 days trekking uptown each day to the hospital, we've shopped, cooked, cleaned, cheered, dog walked and attended a total of six weekly hospital check-up appointments. All things considered Beverley (and Tom) are on their way to something like a normal life again (whatever the hell that is!).

Beverley is still somewhat housebound but the fact that she is fed up with her incarceration is a good sign to us that she'll soon be out of here. She has her bouts of nauseau still, but less frequently we all agree, and she walks out around the block with us to put strength back in those leg muscles on a more regular basis. Cooking gourmet meals for Tom may not be on her agenda quite yet but we'll stock the fridge before we leave, promise.

The medics up at Sloan are happy with Beverley's rate of progress, so we are too. We said goodbye to them all yesterday with very mixed feelings and more than a touch of regret. They are all incredible in their skill, expertise and empathy, so God bless them all, we say.

We will be in Philadelphia from next Wednesday catching up with the family there, so this is our last weekend in New York. We'll close by thanking all of you out there for your unfailing support for Beverley (and Tom) and plead with you to please keep in touch. She needs all of you and is grateful for any and all contact you make.

Friday, August 31, 2007

Medical Record #3512937 FDG Pet Scan Aug 24 2.20pm





What more can I say today than what is says on Beverley's latest PET scan. I quote:

"Patient was imaged from mid skull to the thighs on a dedicated G DSTE PET-CT machine. Phsiological uptake of the radiopharmaceutical is seen but no focal areas of increased radio-tracer was seen ...indicating the absence of tumor."

"Fabulous result" was the phrase used this morning in the clinic by her transplant physician. Could we ask for more !

Of course there is never a guarantee that in the future she will not encounter further problems, and she is still very vulnerable to infection until her immune system adapts to and accepts the donor transplant cells, but the celebrations in New York tonight are because she is free of cancer for the first time in 2 years !!!! Through your unfailing support, all of you - family and friends- near and far- have helped to make this happen by strengthening and cheering and empowering her when things looked bleak. Thank you all.

Beverley will blog again soon, but I think she can enjoy the couch for one more day. Before she closed her eyes she asked me to include this favourite quotation from Alice in Wonderland which buoyed her up from time to time during her last round of chemotherapy immediately before the transplant:

'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.' "


The Dad

PS In all this excitement I forgot to explain the photos:

Sandra and Daniel Call responded to my appeal for patriotic socks for Beverley to use on her Magneciser. They fit a treat as you can see and Archie is mesmerised by them Thank you Sandra and Daniel.

Back home in Brooklyn you can see Miki cooking up various childhood memories to tempt Berverley's appetite. Today's adolescent 'feast' is tuna noodle casserole and alcohol-rubbed tomato sandwiches. As you can see I am attempting to train Archie to put the dishes in the dishwasher. Unfortunately I have to almost fill the dishwasher with 'Aunt Hezikiah's oatmeal anchovy doggy treats' before I can get him to put more than one plate in there ! Then it takes me 30 minutes to clear the filter !

Finally I thought we should all celebrate with a picture of the two heroes of the past two years looking to a brighter future together.

Thursday, August 23, 2007

At Last....

Upon receiving several death threats from the dad I have summoned the energy to blog again. It seems that left without regular updates many of you loyal blog followers have become despondent and frankly irritable for news. I get it and am only sorry it has taken me this long to get back to you all. Getting into a post hospital routine has been the priority for the past week with much help from the mum, dad and the husband. I am required to take about 42 pills a day at various intervals some of which bring on the inevitable nausea which is cured by, yes, you guessed it, taking another pill......Oy... I also have to be infused with a drug through my mediport three times a week which has meant we now have our very own home care nurse named Tatiana who hails from Belarus no less.... well, she lives on Staten Island now. She has successfully trained the dad and the husband to infuse me despite various language barriers and the husband is even capable of removing my mediport needle now. So romantic....

Other than that Mum continues to cook up my favorites and we all head to back to clinic once a week to have my blood drawn and to see how I am progressing. So far so good, all the white coats agree that I am doing very well and I am headed back there tomorrow for my first scan so send good thoughts and prayers for the ongoing results. In other news much to the Dad's dismay the wonderful Archie is home and happily esconced on the couch with me as I write. He is a little confused as there is now a baby gate barring his entrance to the bedroom but has quickly agreed to sleep in the hallway as long as he can still see us. Plentiful liver treats also helped with that transition....

I promise to be more prolific with my blog contributions in the days to come and please know that all your continued support and blog responses mean the world to me as I recover.

Lots of love
b