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.

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

FREE AT LAST !!!!!

The prison gates opened yesterday at 6pm and we bounded free !!!

We don't mind the 30 pills a day that have to be swallowed and the two pages of detailed instructions that come with them. We don't mind pasteurising everything that moves and wiping down food surfaces with white vinegar. We don't mind the endless washing of hands, door knobs, mobile phones, TV remote controls and forcing delivery men to have an alcohol based rub ! (Actually the delivery men quite like it and prefer it to a tip.) We don't even mind the Chapter in " Returning Home after your Allogenic Transplant" entitled "Rules on Hugging and Kissing." However visitors should be warned that you will have to learn to put your mask on with hands dripping with the alcohol rub ! (Dont breathe in for at lest 5 minutes by the way.)

BEVERLEY IS FREE !!!!!

As predicted upon returning to Park slope, Beverley sank immediately into her beloved couch and switched to the food channel. As expected this proved to be an appetite stimulant and we were happy to gratify her 6 weeks of deprivation with a spectacular and memorable plate of Heinz Beans on Toast. Today Mum is making a requested pasteurised cottage pie and for Sunday Beverley has demanded a "childhood type" Sunday lunch with pasteurised roast beef, germ free roast potatoes, abiotic Yorkshire pudding and alcohol rub based meat gravy. As Matthew and Nicola and John and Audrey are home this weekend, only Jennifer and Laura will be missing from a full family gathering.

You can get a germ free flavour of the fun that we had last night on the couch around the Food Channel from the accompanying illustrations. (Our thanks to the incredibly svelte Mom Self for the Trumpets and Hawaiian leis.)

The only thing missing from Beverley's homecoming can be seen in the final illustration showing Beverley and Tom's canine friend Archie sitting in the window of John's house as we left for Beverley's apartment this morning. Tonight I will pasteurise and alcohol rub him and once we find a mask and two pairs of gloves to fit him he can be reintroduced to the 'home hospital.'

The Dad

PS Dot/Lydia, thanks so much for your blog- please send Beverley your email address
PPS Hello Bingleys-Can you FEDEX mulberries ? I cant wait !

Impatient Patient

We nearly made it over the wall at the weekend, but it looks like a few more days yet -Wednesday at the earliest but more likely Thursday/Friday. The problem this time was the familiar one of the need for Beverley to replace all her intravenous drugs with pills before she can be let out. Sometimes the tolerance of the stomach or the response of the body to the pill form of a drug does not mirror the response to the intravenous form and so some careful monitoring/testing/observation is necessary to get the pill doses exactly right. Since she will be taking probably 10 or 11 drugs for a while after her 'escape' and some of them may interact with each other at different doses, you can imagine that it is not a trivial procedure. On Friday when she was trying out an oral replacement for one of her immunosuppressant drugs her blood pressure rose sharply despite already being on a drug to regulate it and -not surprisingly-she developed a very painful headache. (There were those however who wondered whether another cause might be the Cracker Barrel mild cheddar slices on "Wonderbread" that she had demanded on Friday afternoon !) The pain was so bad that she agreed to go back on the 'poppy extract' for a while to try and get rid of it, but this just made her nauseous as well, Finally late on Saturday evening with the aid of oxycontin the pain subsided and her blood pressure fell significantly . Sunday and today she is fine and the final focus of the discussions when the Governor and Warders toured this morning was to find a blood pressure medicine that can combat any adverse effects of the "at home" pill cocktail. She starts on a new blood pressure drug this morning, but it will 24-48 hours before we know if they have picked the right one. Aside from this she is ready to go ! Thankfully she was bright and breezy on Sunday when Tom's Mum and Dad came in from Philly (see photo).

Although she is still not ready for phone chat, Beverley asks me to send her love to all you dog carers in Fort Greene, job consultants on Court Street, Super AD's in Queens, twin diaper changers in Collegeville, dancing fools in Australia, vineyard junkies in the West, equine afficionados in Spain, her old teachers in Hildersham and all you others whose thoughts and kindnesses and presents have 'propped' her up these past weeks. Thursday will be her and Tom's 6 week 'Sloane Kettering Anniversary' and mine and Miki's 5 week party. Fingers crossed we can all celebrate them at home in Brooklyn !

The Dad

More Prison Machines and Protests on the Board

Beverley has proved so fast on the Mighty Magneciser that it's hard to get a photo when her feet are not moving ! (see picture) Notice that she has worn out her blue 'booties' and we have had to call out for the new green ones. (see picture) For you knitters out there - she takes size 10 and we are looking for stars and stripes !
Her cell counts are all excellent and her liver and lungs are perfectly normal. Her nausea is now only sporadic and dwindling, but can be reactivated dramatically when we make suggestions from the Hospital menu. The most dramatic response can be achieved by suggesting "Cream-style Yukon Gold Potato" or "Boneless short ribs with Root Vegetable Ragout" !
Only two things stand between her and the cab back to Brooklyn. One is her level of steroids which is necessarily quite high at the moment to stimulate all the healing. There is a need to taper off the dose over the next four days, observe the response and decide on a low maintenance home dose.
The second slight obstacle is another mechanical torture machine upon which which the 'warders' require patient expertise prior to release. This is officially called the "Inspirometer" but would more aptly be termed the "lungopumpanhourgaspometer" or "another bloody machine" as Beverley puts it. (see illustration). Presumably in case Beverley decides to take a job as a blacksmith or try out for the Olympic track team they require her to ride the MAGNECISER while simultaneously playing Pomodoro Tagliatelli's Trumpet Concerto on her "lungopumpanhourgaspometer. " This additional physical insult is probably her reason for posting her protest statement above her counts on the board (see illustration.)

The big outside news today is the arrival from Phoenix of "Mr Bacon-Head" or my good and faithful friend Tom's Dad. When he and Jenny arrive in New York on Sunday it will be a wonderful extra "Boost" for all of us especially Beverley and Tom.

Thank you all for keeping up the faith. We cherish all your messages.

The Dad

THE MIGHTY MAGNECISER aka the Torture Machine

The word today is that Beverley is still -restlessly- waiting for a release date. The liver is almost back to normal and we had hoped that we might make it out by the end of this week. The 'warders' however stipulate certain targets and all of them have to be met for her to be 'sprung'. First, she has to be eating at least 1000 carrots-oops- calories per day; second she has to be finished with all intravenous drugs and nutrition and finally she has to be regularly riding a machine called the MAGNECISER (See the picture). When Beverley told the Head Warder that her name for the MAGNECISER was "wishful thinking" that didn't go down too well ! All the intravenous drugs are gone, but the nausea is still a problem making it difficult for her to hit the calories target. As for the MAGNECISER - her comments are unprintable ! But rest assured we will get there soon and I plan to post famous photos of her riding the monster and eating a calorie- oops carrot very soon.

The Dad

Stay clear of the woods today and no biopsy thankyou

Beverley has managed some mashed potato with bouillon, more oatmeal and more miniature squares of white bread with the nutty butter on it. Her liver enymes are either stable or decreasing and the "guards" decided this morning to hold off on a liver biopsy, pending re-testing over the weekend. Nausea remains a major problem- we thought for a while that it was caused by the rocking machine that turns her bed into more of a boat in heavy seas every ten minutes- apparently it stops patients getting blisters on their 'bits'- but it is more gastric than aquatic. She can at least alleviate it by taking the anti-nausea medicine half an hour before eating anything. Unfortunately she can't use the anti-nausea medicine which worked for her last summer, because it is particularly hard on the liver. More of her medicines are being withdrawn and she is showing encouraging signs of irritation with the prison routine here. We are seriously beginning to hope that she may be "pardoned" or at least "paroled" at the end of next week. Her throat and mouth are really healing now and as I write this I can see 'stubble' emerging from what (ex) Technician Trev would call her "polished pate." If the rate of regrowth of her hair is about the same as the regrowth of her stomach lining, then that could help to explain the persistent nausea.

Many of our American and Australian readers may not be aware of the identity of (ex) Technician Trev. Prior to his tranatlantic sacking this morning for suggesting that I compensate with furniture polish for my lack of skull epidermal cylindrical, keratinized pigmented filaments, he was my faithful principal research assistant in the Cambridge Biochemistry Department for more years than I care to remember.

And for your information Mom Self- Mr Sheen (UK) =Pledge (US)

Finally what more can any man ask on his natal anniversary than the spectacular support of Dad Self !? What a star! By smearing his pate with bacon fat and encouraging Bears to salivate, he made the great sacrifice for the International Shampoo Simplification Campaign. Now Bears will never be so monosecretory in the woods ever again !

The Dad

Hello from the Mom

My turn today as Bev is using all her energy for trying to sort out her rebellious stomach. Her mouth is much better but now her stomach is howling for attention and if it doesn't like the offering it chucks it back, the little bugger. The good news is that everything has stayed down for 24 hours now - since we took the nurse's advice and switched to solids, porridge, bread and peanut butter. Tea and apple juice are currently off the menu as they didn't seem to be acceptable. We're planning to order mashed potatoes for dinner to see how the stomach monster likes that. Here's hoping.

I'd like to take this opportunity to reach out in cyber space to all my fellow middle-aged bloggers. It's all very well for you 30 somethings to be blogging away but some of us grey panthers have found this all a pretty steep learning curve. So here's to all of us (you know who you are) who've struggled with the technology and mastered it. We love hearing from you all.

Mom

PS The Dad is in Federal court in Brooklyn today being sued for defamation by Proctor and Gamble, Pantene, El Vive, Paul Mitchell and seven other shampoo manufacturers in a class action suit. Before the men with the van came for him, he left a medical message to say that all the recent ultrasound tests on Beverley (Liver and Gall Bladder) look fine and the only unusual feature is an elevated level of some liver enzymes (names supplied on request). This is only a blip and could be the reaction of her system to all the drugs she is taking to guard against viruses, bacteria and fungi.

Mmmmm, air . . .

No more oxygen for Bev, well at least no more additional oxygen other than what air provides. She's been off it since yesterday and all's well. It seems that Bev's strength along with a little steroids have conquered the labored breathing problem. Now we'll just taper off the roids and see how it goes. Counts are still good. In fact everything seems pretty good right now. The only exception is her liver which is slightly inflamed, but was scanned and sonographed yesterday and all seems fine. Apparently its just another side effect of transplant, but they're doing a Hep test anyway. By the way, sonograms don't look fun.

As I'm typing this, Bev looks quite healthy sitting up sipping her Boost and watching GMA. I say you people start demanding some first-person Bev blogging. Words of wisdom from Bev: "It's important to burp." She actually just said that. See what you're missing?

Take care and keep the prayers coming.

-Tom