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.

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

Boost the Bev and not the 'Beasties"

Today Beverley's counts continue to be strong. She came off the poppy juice on Sunday morning except for what is euphemistically termed a "rescue" dose. (If the pain becomes too tough, you press a button and float away for a while.) Freed from the drip-drip-drip of the narcotic she was much brighter, speaking crisply and -sadly - devouring tabloid details of the wedding of Dolores Duodenum and Harvey Heterohernia. ( Sorry after two weeks in this place everything sounds like a body part or a drug!) She also consumed her first non-hospital nutrition in the form of 6 ounces of strawberry flavoured "Boost" . Last year this -and chicken noodle soup with the noodles removed- proved to be her favourite post-transplant beverage prior to the onset of "Gin." Having had very little real -hallucination free- sleep for several days, yesterday's -relatively-normal human activity following the withdrawal of the poppy extract usually leads to a day or so of really deep natural sleep and today (Monday) we are seeing that. We watched this scene unfold last August, so we are happy to wait until she is 'slept out.' At the present moment (Monday 12noon) we are still waiting detailed results from Beverley's Friday bronchoscopy. She is still breathing oxygen but this has been reduced by half from Friday's supply and my wristwatch tells me that her breathing rate is down by a half from Friday. She is not coughing at all and so we are hopeful that whatever the lung problem was at the end of last week is subsiding. Certainly the cultures from the bronchoscopy have not shown any signs of an infection at this stage-although there are more long term culture results still to come.

On this matter of fungal infections - and as previewed by Tom- todays scientific sermon will focus on the contribution of women's hair care to the incidence of fungal infections. As a parent and scientist with a daughter at risk of lung infection I feel it my duty to speak out ! Among the possible 'bugs' that can infect patients -especially in the lungs-following stem cell transplants are fungi and yeasts like Aspergillus and Nocardia (Hamadani M, Benson DM Jr, Blum W, Garzon R, Devine S., Pulmonary Nocardia and Aspergillus co-infection in a patient with chronic graft-versus-host disease.
Transpl Infect Dis. 2007 Jul 25; [Epub ahead of print]) (Dont rush-Read it later)

Now consider the changes in women's hair care products in recent years and you will notice that the main commercial thrust has been to ensure that they are stuffed with enough exotic 'nutrients' to feed the bugs of the world and - most importantly for my thesis- to ensure that the residue of these products left behind in the shower should look to a bug like the remains of a banquet ! Fish proteins, acacia honey, marmoset milk, frog proteins, pork scratchings, albumen, jojoba oil, beeswax, coconut oil, yak butter, oil of ole', wheat bran, green salad, corn syrup, mango extract, whale oil and larks tongues are but a sample of what you girls will smother over your scalp to get that 'lustre' on your locks. Meanwhile down on the shower floor and along the tiles the bugs are building ! Smacking their microbial lips and multiplying as never before in the old 'carbolic ' days. Once upon a time you washed your hair with a real soap made from pure unaldulterated lard, whose principal additive was a phenol derivative guaranteed to put the fear of extinction into any bug. Now the shampoo slogans should read "Guaranteed to promote the growth of 99.9% of known germs !!!!" Soooo... in the showers and bathrooms of the world that black line between the tiles and those black patches on the curtain and on the ceiling are, I submit, the visible form of a massive invasion by the force- the 'Fungal Force !' Fling away your fancy formulas girls - you have nothing to lose but your fungi !

The Dad

Survival Friday

The title of this post has nothing to do with Bev (although she's surviving quite nicely) but with the name that the Discovery Channel has given its Friday night lineup we're about to watch. "Man vs. Wild" is one of the best shows on TV and as far as I know, the only place where you can learn how to properly exract drinking water from an elephant turd. Enough about that however, I can see I'll need to be quick, Bev has just changed the channel to VH1.

The bronchoscopy went well (says the man who didn't have a camera shoved down his throat) and we should have some results on Monday. Quick overview of a bronchoscopy: they stick a camera into your lungs, they pump in some water, rough up the inside a little with a pipe cleaner, suck out the water, put it on a few petri dishes and see what grows. Sound fun? Could be bacteria. Could be fungus. Could be viral. Or it could be nothing. Right now Bev's throat is a little sore and she's pretty tired, but her counts are good, spirits are high and she's very happy not to be getting a bronchoscopy tomorrow.

That's all for now. We're both pretty tired, but stay tuned to the blog. In the next couple of days a well-respected Cambridge microbiologist will explain how women are the cause of lung infections.

That's all for now - keep the prayers coming.

-Tom

Birthday Bash and Bronchoscopy

Because of all the birthday festivities the blog will be short today. Miki and Tom have celebrated too much with Lidocaine and Tonic, Beverley as you know is still sipping poppy juice, so I am the only neuronally unchallenged human in the room -or so I would have you believe ! The balloons came as promised from the selfless Self family and Beverleys Aunt, Uncle and cousins in Philly. Thanks to Skype, Beverley and her sister Jennifer were able to chat briefly across the Atlantic. Her brothers and sister in law in New York can be here in person of course. As promised the Sloane Kettering birthday cake arrived ! Although Beverley can sip apple juice and swallow a pill or two now, Tom and I have had to sacrifice ourselves to demolish the cake. Beverley's nutritional birthday treats today have been as follows: for her appetiser she had one 8 ounce carton of "RESOURCE"-"Nutritional Supplement Wild Berry Artificial Flavour;" she followed that with the entree which was one 8 ounce can of "ENSURE-Complete Balanced Nutrition -Lactose Free, Gluten Free and Vanilla Flavoured ;" Probably wisely she declined the dessert of "UP AND ATOM- POWERBOOST PUDDING-Chocolate Flavour." Honestly FOLKS I do not make these things up ! This was all washed down with dilute ice cold apple juice. What a fabulous birthday feast ! Hopefully I will manage to upload four photographs of the "party" into the blog to give you a glimpse of the shenaningans in the sick room. Beverley asks me to give her love to all of you, to say how much she misses all of you and to thank you for your gifts whether they were lip balm, magazine balm, birthday card balm, balloon balm or -in Tom's case- a wonderful book of perfect beach houses to be their dream for the future.

Beverleys counts had all increased again overnight and she is more lucid and awake with the planed reduction in poppy juice. Her mouth, throat and other key mucosal surfaces are healing well. Unfortunately what is thought to be the fluid around her lungs is persisting despite the diuretic medicine (Shut up Chris). Its only effect is to make her breathing more difficult, so it is more irritating than debillitating. There is a faint possibility of some lung infection, but because she is receiving a host of antibacterial agents plus two antifungals and one antiviral drug, the 'team' don't believe this is likely. However to have a closer look at what is going on in the lungs they will put a tube with a camera down there (Bronchoscopy) tomorrow afternoon. Beverley has had one before last December and knows what to expect. It means an anaesthetic and so she may be sleepy tomorrow.

Will keep you all posted

The Dad

Avian aerial attack and Good figures

Some sneaky animal rights activist among you must have leaked my blog to the flying rodents -or pigeons as they are fondly known ! I suspect this because this morning while walking to the hospital with Miki on 68th street, an avian ace dive-bombed me scoring a direct hit !! This explains why I am sitting at the computer dressed in a Stanford University tee shirt-thanks to Tom. Beverley is too much into the poppy extract to blog, Miki is decontaminating my shirt with "Alcohol-based Hand Rub " and Tom -who took over the night shift from Miki last night - is in gainful employment as we say.
So SCIENCE RULES THE BLOG again today - especially for Pete and Dawn

You all know that we are looking for signs of the cancer free donor stem cells settling comfortably into Beverley and "engrafting" or becoming permanent residents. Successful "engraftment" usually takes 14-21 days after the transplant to show itself. Before the transplant (July 12th) Beverley had a course of Chemotherapy to eradicate her own stem cells so we can tell if the donor cells are taking over when we see big increases in all the blood cells (Red and white blood cells, blood platelets, neutrophils etc) that are normally produced from healthy stem cells. As I look at the charts today I can tell you all that her white blood cells have increased almost 60 fold from 12 days ago, her neutrophils have jumped 80 fold and her platelets 50 fold ! All the medical team now affirm that her graft is working for the moment. Her throat and tongue although still sore should heal more rapidly now that her cells counts are rising and with that in mind her poppy juice has been cut- only slowly to avoid withdrawal symptoms- but she is now merely drowsy and not making hand gestures and talking production schedules in her sleep as she has been for the past four days.

At the risk of boring you we all want to repeat our deep appreciation for the messages you send. When we see a lucid moment coming in poppy juice land we read to her about vodka and tonic and sunny beaches and downunder and shooting the American Princess. You all get a nod and a smile and hopefully in a few days a personal reply. Lymphoma Dad (2, Trev and Lee that means you guys too. Now I'm off to get the BALLOONS ! Yes folks it's Beverley's birthday tomorrow and this wonderful hospital has promised us a cake ! Several years ago tomorrow I held this little thing in my arms in the Mill Road Maternity Hospital Cambridge and I am not about to let her go now.

The Dad

P.S.Miki here - and on a lighter note, here's today's fashion tip. An easy solution to that problem of growing finger nails. Try wearing latex gloves 24/7 for 11 days and, hey presto, job done. Bye for now.

After 24 hours up on level 21 in the Sloane Kettering EELDFLU suite (english evaporation and linguistic detoxification for limeys unit) , I was pronounced fit to Blog again. So mostly monosyllabic (oops!) words today and single clause sentences. Here goes......

The good news is

1. Beverley is sipping and swallowing ice water !
2. Beverley's counts -although still low- DOUBLED in the last 24 hours !
3. York Ave is full of bunting for Tom's return tomorrow.
4. I am up to date with the laundry.

Thats all Folks !

The Dad

David is in detox after yesterday's ramblings, so it's the mom here today. And, sorry to rub it in for all our English readers, it's a beautiful, creamy day here in New York. Dappled sunshine filtering through the upper East Side trees, no humidity, low 80s - perfect for strolling, a pleasure currently denied to the patient sadly. Still, we knew from last time that this would be the waiting time and so it is proving to be. We feed on all the snippets of information relayed by the medical team, happy that things like temperature, saturation levels (oxygen in the blood), blood pressure are all normal but what we really want to hear about is rising counts which will start us on the upward road. So keep all those good thoughts and prayers coming. Bev is pleased to hear that her nephew Jack may be homeward bound next Mon (same day as Tom actually) and we're hoping that he starts a family trend.

Matt and Nicola continue to unpack in Brooklyn while John and Audrey sun themselves on the beach on Block Island. Not sure how Jen and Laura are spending their Saturday back in Cambridge but hope it's not dodging those showers.

David sent Archie (the dog) off with Melissa this morning and Molly (other dog) will also be having a vacation courtesy of the dog walker. So that means David will return to an empty house this evening and do the laundry without interruptions.

As I write this Bev is behind me on the bed having all her lines reconnected after a shower. Her "robot" misbehaved in the night and the beeping kept both of us awake. Car alarms have nothing on this irritating 'dalek' and we would happily dispatch it to the 'tardis' if it wasn't for all the good stuff hanging off it to aid recovery. For any Americans needing an explanation of dalek and tardis I refer you to Matt or John,

Gotta go now and seek out another upper East Side clip joint (oops sorry, bistro) for dinner. Until tomorrow.

The Mom

PS LET ME OUT ! (The Dad)

Just an ordinary day in Gotham city

All quiet in Room 826 this morning as we check the hospital pipes for steam leaks. Why steam leaks do I hear you ask ? Well if you have been been following the slow decay of the Big Apple, you will know that in addition to 'panhandlers', itinerant musicians, compulsive subway rapper choirs, kamikaze pigeons and spatially challenged newly arrived occidental taxi drivers, the New York commuter now has to be alert for geysers erupting from the sidewalk and covering passers-by with a excoriating mixture of scalding steam, red mud and asbestos dust ! Sleeping comfortably across from Beverley until Tom returns next Monday, Miki is safe from all these terrors. I on the other hand have to venture forth each evening lugging giant bags of laundry to tread the perilous path to Brooklyn. Actually by carrying the bags on my head I discovered that I am protected against all of these terrors: avaricious pleading amateur musicians think me one of them but with my accordion on my head; by slightly opening the bag and inserting my head, I muffle rapper concerts on the subway without causing offense to the chorus because I am judged to be mentally challenged; the pavement march of the bright blue IKEA bag sprouting giant ear-like handles and trailing the odd pyjama leg scares the ordure out of the pigeons but apparently not aimed at me and finally when the linguistically challenged taxi driver hesitates to venture across the Brooklyn bridge after dark, I threaten to butt him with the blue laundry monster !

Ah do I hear you ask how is the patient ? Sleeping I am happy to say. For the past three days she has been retaining fluids to some extent -perfectly normal in a proportion of patients. In the face and limbs the extra fluid just causes some swelling but fluid around the lungs makes the patient have to breathe harder to obtain the same intake of oxygen. To deal with this Beverley is now breathing pure oxygen and being infused with the drug Lasix -a diuretic- which will reduce the fluid retention. Unfortunately the fluid doesnt evaporate and the consequence is that Beverley's visits to the bathroom are as frequent as wet days in Cambridge. Another normal consequence of the chemotherapy that patients receive before the donor white cells are given, is the condition known as Mucositis. As we saw after her autologous transplant last August, Beverley seems especially susceptible to this. Chemotherapy is designed to kill all rapidly dividing cells in the body. In aggressive form cancer cells can reproduce every 24 hours, but so do cells lining some internal surfaces of the body such as the mouth, throat and intestinal tract. The chemotherapy therefore also kills these- mucosal cells- hence Mucositis. There is no magic relief, Beverley just has to sit it out until replacement cells recolonise her mouth and throat etc. Meanwhile its very painful, difficult to speak and she cant swallow. So if she doesnt talk on the phone for a few more days please be patient folks . She certainly mumbles about you all constantly, adores the blog comments and exhorts us to "read that again." You all make a difference I promise you.

Finally I am delighted to hear from Lynn in Cambridge that Whit is bravely spearheading a protest movement against all-female book clubs. Its an insidious English discriminatory movement that seeks to deprive men of equal partnership with women. Rest assured that I shall campaign vigorously on this side of the pond to prevent my younger daughter from becoming infected !

The Dad

It's all 'go' here OR water water everywhere

Hi to all from Mum and Dad Ellar

Sorry for yesterday's absence but we were all sitting around eating chocs and reading novels. Just kidding! (Not me folks ! As usual I was doing laundry-Dad) Today has been hectic and the theme is water, both the city's and Beverley's. We woke up to thunder storms and the news that Queens is under water, well the subways anyway. (Republican Dad thought she said the "Queen" was under water and rushed for the champagne !) And Bev woke up with shortness of breath caused by retention of water. So today's efforts have all gone into resolving that issue. She's lying here as we write with an oxygen mask over her face and diuretics going in (Into a vein not the Oxygen mask !-Dad). This is all a balancing act of course and diuretics mean more bathroom stops which means more shortness of breath and round and round we go. Add to this a nose bleed caused by a nasal cannula and you'll see what I mean about hectic.

Seriously though we continue to be overwhelmed by the nursing staff who tirelessly implement the medical staff's expertise with such skill and good humour. The mouth monsters seem to be roaring less thanks to magic mouthwash - a special cocktail with Lidocaine as the magic ingredient.

Things are not all medical however as she had time to check out Eva Longoria's wedding dress in OK thanks to the gift of a copy from well wishers. We liked it but didn't think much of the bridesmaid's outfits.

Please keep those comments coming. Especially nice for us to hear from Cathy yesterday- (Hi John - steer clear of laundry -Dad) Just exercise caution with your outpourings in case we ever take up Ma Self's idea of publishing a book.

Love to all

Miki and David

Life with Father

I was forced out of blog retirement to combat the foul calumny spread by my dear wife on yesterdays blog. The impression given was that all the men in town had deserted the bevbed for recreational activities. For example The Dad was said to be sunning himself on the beach ! I hereby wish to state that my only reason for seaking the seaside was to thoroughly wash and sterilise the five loads of laundry that my beloved daughter and son in law had preserved for my arrival. Following an ancient asian tradition the finest strategy for sterilising items from the sick room is scrubbing with sand, rinsing with saltwater and exposure to strong sunlight. And if my beloved wife has given anyone the impression that Tom has fled to Scotland to play the ancient game where they hit a haggis with a stick and knock it into the well, that is also an evil falsehood ! Tom is actually on a medical mission for Memorial Sloane Kettering to find and bring back lucky white heather for the Hospital phytopharmaceutical research programme. Incidentally have you all noticed that something strange happens to people's spelling in this First Ave Health Spa. First we have Tom with 'Naseaus", then Beverley with "apparantly" and now my own dear wife - who was trained at CAMBRIDGE UNIVERSITY PRESS- steps forward with "laundery." And now to Bev as the Bard said. Yesterday was a tough day with much throat pain engendered by the medical staff asking her to swallow two pills. Sounds simple I hear you say, but her mother and I should have been there to warn them that asking the Ellar girls to swallow pills is like asking your trusting friend to retrieve your wedding ring which you have acidentally dropped in your petrol tank, by looking into the opening with a candle. As children, a pill could only be introduced orally if the girl concerned held it between her own forefinger and thumb, placed it on the back of her tongue, closed her mouth until the parents averted their gaze and then silently but explosively propilled (sic) it away from her mouth, usually behind the red couch! Too weak to spit across the room Beverley accidentally swallowed the little beasties which promptly settled in her upper glottal regions and were a major pain for much of yesterday. Late in the wee small hours the decision was made to increase her euphoria with some serious poppy extract. This did the trick although Beverley has some exciting and fascinating mini episodes where she tells us all about the need to train more horses for the trip to mars ! But the good news is the pain is under control, she is showering regularly, she has enough voice now to blow away an unresponsive midnight medic and -best of all -she has been told she has "perfect urine" (Thanks to a proper parental upbringing I hear you say). Thanks to all of you for your messages- they are great medicine beyond anything they can give her here. I think we are on the way.
The Dad

Deja Vu

Hello from Miki (the Mom)

Well here I am, at Sloan again this summer. (NOTE TO BEV: find something better to do with your summers Kiddo. Much as I like this place I do NOT want to come back again next year!). David and I arrived safely and easily on Thurs despite Jen's friend's admonishment not to fly Virgin as they don't go all the way. Well Jean this time they did thankfully for us, And now here we are. Well here I am actually. The Dad is on the beach and the husband is on the golf course - what a life. David, John and Audrey are enjoying a fine day at the beach but he'll be back here first thing Mon with the clean laundrey (he hasn't been entirely wasting his time).

Bev's energy levels are up today but the mouth monsters are still with us. The nurses earned their money last night (when do they not?) as three patients 'spiked' fevers and had to go down for xrays. Made bedtime a bit late but, hey, we're not going anywhere and can catch up on zzzzs anytime.

Bev is now three days post transplant and counting. Counts still low but each day brings changes good and bad as the new stem cells engraft. Do please keep those messages and comments coming (well done Jennie for persevering). Bev feels her isolation in here very much and loves knowing what everyone outside is up to. So as the man says, keep those cards and letters coming.

Miki

P.S. Hope you're feeling better Lauren and ten bucks says you were on your treo!

Day One

Tom here. The stem cells of a young white man dripped into Bev yesterday (Day Zero) without much fanfare. They started at a little after 1pm and finished up by 3pm. The allogeneic process is a lot simpler than the autologous of last year. No smelly preservatives and people shoving lemon wedges in her face to combat the odor (hint to the medical profession: the lemons don't work). The stem cells hung there looking like tomato soup so much that it made me want a grilled cheese sandwich. Bev has spent the first 35 years of her life having a blood type of O+, now over the next few weeks (possibly by her 35th B-day on July 26) her blood will start to type A+, the same as her donor's and coincidently, the same as me. How many husbands have wives who would go to such extremes to be a little bit more like them? I'm a lucky man.

As the legions of cancer conquering stem cells have entered the battlefield, so has mouth pain. We weren't much looking forward to mouth pain, but from experience we know it's something she can handle and get through. The hydromorphone pain pump helps (you really should get one). Having gone through similar pain last year, we know what works best for Bev and hopefully we'll be able to avoid the side effects of morphine and its withdrawal. In addition to the pain, it looks like she might be spiking a fever soon, not uncommon after transplant - just means getting blood cultures and maybe an X-ray done. Undoubtedly that will all happen about 2:30 in the morning because that's just when those things seem to happen.

Bev's parents have landed on our shores from the UK. We're very excited to see them (and I know they can't wait to see her). They're being held in quarantine outside of Philly tonight, but will be up tomorrow just in time to take over for me. I am not "going on a golfing trip" as Bev puts it. I am going to Scotland to WORK the British Open. It makes me feel very secure to know that I'll be leaving Bev in such loving care.

That's all for now. Hopefully Bev will be back to blogging tomorrow.

-Tom

'Transplant Eve'

Well, I guess there's no turning back now and that thought has led me to think about how I have chosen to fight this miserable disease and also to ask you to put another fighter and his family in your prayers tonight. We just got the news tonight that Tom's good friend Patrick's father, Mike Floyd or 'The Commish' as he was known to his good friends finally lost his battle with leukemia. Our thoughts and prayers are with Patrick and his family.

This news on this particular day has led me to think about lots of things but most of all it has led me to wonder about what the last two years have meant to me. By the time I was finally officially diagnosed there were all sorts of fancy test results, many doctors dancing attendance and lots of choices to be made but for some reason, 4 weeks earlier the first time I was told by a lab technician that something looked a little odd I was totally alone. Tom had returned to work thinking I was about to undergo a routine needle biopsy for what we thought was a cyst. I stood alone in that exam room as the technician came back and forth each time looking more unsure and during one of the times she was out of the room I found myself standing in front of the mirror and I remember saying to myself out loud, "Whatever it is, you can do this". I was very scared but I now know that what has been key to my survival since then is that I embraced it all from day one as part of MY life, MY journey and MY struggle. Ahh to rewind the clock and indeed plenty of people have since asked me don't I wonder why me? My good friend Ailis most recently asked me don't I sometimes get angry that it's just not fair? The short answer is hey, we all have good days and bad days and I aint no saint but the long answer is no, it's all me and you can't have any of it and I don't want to lose any of it either. Life is not some surgical procedure where you get to remove the fat from under the eyes when you turn 40. You gotta love it all and make your peace with it as you go along.

My point is that on the eve of this rather risky procedure they call a stem cell transplant if someone came to me and offered me the choice I still wouldn't rewind that clock. I have lived my life every day since that hideous day in that examining room at NYU and you can't have any of it - every day has been precious whether it was spent in fear listening to doctors talk statistics or sitting at the Dip Net Inn eating a crab melt on sourdough with my honey. I have smelled the roses and let me tell you they smell good. Eat, drink and be merry in memory of 'The Commish' and everyone else who has faced this and survived. In the words of the Dip Net Inn in Port Clyde, ME. "Live Long, Love Strong and Eat Seafood".


p.s. You can all blame my brother's girlfriend's sister, Amanda if this is morbid cause she wasn't cooking anything good to distract me on her blog today!

http://www.figsoliveswine.blogspot.com/

Blessed are the Pooper Scoopers.....

Today was a day of too much poop..... For those of you who like to catch up on my blog whilst enjoying dinner then look away now... Archie pooped on my brother and sister in laws carpet today just as a welcome home gift... and I pooped my pants! Side effect of the chemo I'm afraid....We must all feel sorry for the wonderful 'Yerlanda' who as you can probably guess does not hail from these shores but nonethless got the job of making my bed twice today....Bless all those who work here. "I'll get you my pretty and your little dog too!!!" (said in scary witch voice from the wizard of oz). Well, Archie looks a little bit like Toto....
Bless all those who pick up poop including my own parents who arrive in 48 hours and counting and I know relish this job above any other! Ahh good times......

In other news I have had a pretty good day. My mouth and throat are beginning to swell up with the nasty mucositis that some of you may remember from the last time but have not yet gotten so bad that I can't swallow some fluids and manage basic food. Tonight's dinner consisted of a Boost shake which is basically an energy shake for sick and old people......yum.......Meanwhile my husband had mexican al fresco last night and is dining out with friends again tonight.....hmmmm....I see a pattern here...Just kidding honey. He brought the Boost to the bedside before leaving, what more could a gal want.

I have also spent much of my day obsessed with buying shacks on the water in Maine having just returned from a ridiculoulsy awesome visit. I cannot tell you what a good time we had so if any one is up for going in on some ol shack on the water then let me know cause I am all fired up!! Lobster rolls rock....Tom had crab cakes benedict for breakfast and we ate homemade icecream together sitting on the hood of our car staring out at the bay. We took a schooner ride which was also wonderful and I am trying to conjure up the sounds of the water lapping against the wooden deck as I write..I need it on a sound loop in this room. Close your eyes and think of Maine.

I have been sucessfully skyping with some of you, you know who you are and thanks, cause it's means a lot to see your smiling faces. I feel pretty darn lucky sitting here tonight knowing that you guys are all out there rooting for me and reading the ramblings of an daft old English bird. SUCKERS! I'm making the best of it in here so I hope you are all doing the same out there. Think of me as you sip that yummy wine and taste that perfect morsel and just remember, you could be drinking Boost through a straw!

I love you all
bev

P.S Special love goes out to my peeps 'Baby Jack McHale' tonight - hang in there buddy cause that's how we roll in this family!

Bev is back!

Just in time to counteract my husbands bad spelling apparantly......Had a slightly better day today with no nasty chemo drug begining with M, although I did get the one beginning with F. They also started me on some other drugs to help suppress my immune systsem and so on it goes.......The nurses let me take a shower unooked from all my tubes which was pure luxury.. Hot water and plenty of big soft towels I had brought from home. I get to take a shower like that every 4 days and inbetween it's a little more tricky but you don't need the details.....Suffice to say my grandmothers expression of "A Penny Wash" comes into play.

Sounds like it's hot out there for all you folks with dangers of rolling blackouts - so hey, think twice before you crank that air conditioner tonight, you wouldn't want to deprive a cancer patient of their nice icebox now would you.....Just kidding, I'm sure there's a generator here somewhere.... Have been a little out of touch with the celebrity news so will have to catch up and then get back to you all. Will be watching the usual tonight, Little People Big World on TLC which I am addicted to followed by the Closer on TBS. Both solid Monday night viewing choices for those of you with nothing better to do, like me..

You will all be pleased to hear that Archie's summer adventure continues, tonight he gets to spend the night at home with Tom and Tom's best freind Pete and his wife to be, Dawn. By the way, Tom will be officiating at their wedding next year which is kind of exciting. I mean, we did it on Queer Eye but we realy had no idea if it was actually legal!!!! Anyhoo, I'm sure they'll figure out any snafoo's by then. As of tomorrow Archie enters the world of his favorite cousin, Molly the beautiful chocolate lab. Here he will torture and be tortured for a while until my mum and dad arrive this week to keep the peace and walk them both.

Phew, they say it takes a village to raise a child, it feels like it takes an army to heal one. Well thats all for now folks as I sense the nausea creeping in again and the need for some more drugs. Hope you are all well and the best news of the day is that my little neice Addie felt well enough to make the journey home. Hang in there Jack, I know exactly how you feel buddy.

xoxox
bev

Naseaus

So Bev's not feeling so hot today. A lot of nausea and severe crappiness, I imagine it's like severe stomach flu or food poisoning without any relief. The week leading up to the transplant she's getting five days of chemo made up of two types of chemo drugs. One of the drugs (starts with an "M") is the main culprit for causing the nausea, but the good news is that she only gets that the first two of the five days and those days are behind us. Hopefully she'll be feeling better and up to blogging later today or tomorrow. Still three more days (including today) of the other drug (starts with an "F") before her day of rest. It'll be good to be off all the M-F-ing drugs and on to the transplant.

The phalanx of whitecoats will be around soon to feel Bev's ankles and ignore me. On the first days of our stay I would get a little nervous. Was I doing everything the caregiver should, was I being as sterile as I should be in their white-coated opinions? It didn't take long for me to remember they're all just a bunch of asses, a well-learned group of asses with the latest knowledge in fighting cancer, but asses none-the-less. And asses don't give a crap about me, to them I may as well be a large plush toy in the corner with mask and gloves. Fine with me, just make my wife better.

God bless the nurses, everyone praying for us and supporting us, everyone going through cancer treatment and even God bless the asses.

-Tom

Evening Peeps, So glad to read all your postings, it makes me feel so connected in this strange isolated world, it's the best tonic so keep em coming. Today was pretty uneventful but started well when my favorite nurse showed up from last time I was in here. She's working days now and was taking care of me today so we got to catch up. Spent the day reading and watching movies which I am sure sounds like fun to some of you but trust me, its not all that exciting. By the way, note to self, 'Sherry Baby' is kind of a downer! Thankfully the room gets sunlight pretty much all day and I can sit up on the window sill and watch the world go by 8 stories below or, I can lie on my back on the couch, look up at the clouds and pretend I'm on the beach. A good imagination is key you understand...... I'm sure you can't wait mum...

I got hooked up to two new chemo drugs today along with some anti nausea stuff, (thank god), no bad side effects so far but watch this space! Most likely they won't show up till early next week. Good to have something to look forward to.... ;-)
This morning Tom and I were visited by about 10 doctors all at the same time, we were glad we had the bigger room or half of them would have been in the hallway. There's a joke in there somewhere about doctor's and changing a light bulb but I'm too tired to think of one. Suffice to say they all troop in, feel my ankles, (that seems to be a popular one), listen to my lungs and then leave. I'm more a fan of the nurses myself.

In celebrity news I am looking forward to Desperate Housewife Eva Longoria's wedding tomorrow in Paris as I am sure you are too.. Can't wait to see those pics. According to my very reliable sources (In Touch Magazine), the cake cost $15,000. Gotta love the glitz! Also looking forward to the big Live Earth concert Al Gore has been organizing while he wasn't busy bailing his son out of the drunk tank and helping him into rehab. Should be a good show.

Well I'm signing off for now as my food has arrived... well, you can't really call it food but you get the gist.

Lots of love
bev

Here we go again....

Dear all, As most of you know by now we're headed for another transplant starting today. This time I am getting someone elses stem cells, a young white man is all we know about him but I am hoping he will turn out to be Ailis's future husband and am willing to go through all this if thats what it takes for Ailis to meet the man of her dreams.... Ailis, you know you can count on me. He is anonymous for now but I am told that in a year I will be allowed to correspond with him and thank him for basically saving my life. (as well as find out if he's tall enough to date Ailis).

I know some of you were curious to know exactly what he gets out of it and basically it's nothing, no payment of any kind and he has to take time off work to have his stem cells collected. This is done in a pretty easy way, they spin them off his blood over a couple of days and then pack them up and fly them to me bit like a donor transplant. I then have them infused in a pretty straigtforward way through my central line - this happens next Thursday so technically the 12th of July will be a new birthday for me. Its also the day my mum and dad get here from the UK and my sister Jen moves into her new house so it's gonna be a busy one!

Once I have his stem cells we wait and hope and pray for a solid and quick engraftment of his immune system into me. I will get a whole new blood type which is cool along with who knows what else.....All being well his immune system will recognize any cancer left in me and kick it's ass back to cancer land pronto! It's alot more complicated than that and there are some potential bumps along the way but hey, but if you want to know more there is always Google.... My father banned me from googling a long time ago, (threatened to cut off my hands to be exact)....Just remember, statistics is just fuzzy math, right Bridget..... ;-)

Today I was admitted and given a new central line which has three lumens meaning three places they can hook up three different kinds of crap to me - anything from antibiotics to chemo. It's delightful and as I write I am attached to something that looks about the size of a small European car and has to be dragged behind me wherever I go... Deep Joy. Tomorrow chemo starts for 5 days then Wednesay is a day of rest (ha ha) and Thursday I get my stem cells. The good news is that we scored the mack daddy of all rooms on the 8th floor! It's twice the size of our last one and Tom actually has a pull out leather couch this time. I need to take a rain check on visitors for now but all deliveries of tabloids such as In Touch, Us Weekly etc are gratefully received. You all know about my secret addiction to all things celebrity.

Hope this schedule puts you all in the loop as Tom and I would be lost without you. Your constant care, help, love, good thoughts, prayers, ju ju and whatever else have meant the world to us over the past 18 months and we just hope you can all stick around for the happy ending. I will try and blog every day but in my absence there will be some guest bloggers back by popular demand. You'll just have to check in to see who.....Please pass this on to any and all I may have forgotten and anyone you feel might get a kick out of the ramblings of some old English bird with cancer.

I figure if Paris can do 23 days and Alan Johnston can do 16 weeks I can hang out here for a while, I mean really, who wants to ride the subway in July and August anyway?

All my love
Bev
xoxox

P.S If any of you have skype or webcams you can always call me up - my skype username is beverleyself and I'm not sure how the other ones work but I have a mac laptop with a built in camera. I got to talk to Archie on the webcam tonight and it was pretty cool.... we miss the doodle....