Catch-up

For all those wondering why you haven't heard from me in a few weeks - it's because I have been in hospital. And believe it or not, the hospital system does not allow me to sign in on my blogspot account!
So here's the brief update - even though it feels like the longest time. I was readmitted to the hospital 10 days ago because I had difficulty breathing a few days after the last surgery. My oxygen level was low and there was some fluid build up around my heart and lungs. That was all starting to resolve and on friday morning, as they were prepping me to leave, they did one last blood test. My white blood count had skyrocketed and I was moved immediately to the icu. Within 2 hours I was treated with massive doses of anitibiotics. Any of you who have ever spent time in a hospital know it takes them forever to do anything - but they really moved like lightening on this one!
I can tell you this has been an ordeal. In the icu you are prodded, poked and generally annoyed non-stop. Days meld into nights and all you are aware of is noise and beeping. There is no such thing as restful sleep - or any sleep! My white blood cell count has come down a lot and the infection is responding to the treatment. Today I will be getting 2 litres of blood and then I will be moved to a room where I am less tethered and can walk around and begin my recovery. Thank you all for your calls and concern. It means the world to me.
Ade (dictated not read)

I'm home

Before I forget, here is the link to the Biotech company:

http://www.championsbiotechnology.com/index.html

www.personalizedcancertreatment.com

Carpe Diem.

Hospital day

I'm still in the hospital in the same observed unit. CSU for those of you who know the lingo! I'm actually feeling really good. Some pain and discomfort but mentally upbeat. All my chats with the doctors have been positive and encouraging but please don't expect me to remember it all! Diana has all the info and Russ is the backup! I had to get my body working again (no need to go into details!) And that was what I did! By mid afternoon I was moved to my own room and what a great room it is! Mike and Diana joined Russ and I and we settled me in! Hopefully I will be off home tomorrow!

Carpe Diem.

Mouse implant day

The best thing about my psychiatric appointment was that Dr Ward reassured me that what I was experiencing was a long large panic attack! The mind is so vulnerable and the speed that I went into decline is just unbelievable. It is so difficult to haul yourself out of this frame of mind and the things that went through my head were hideous! My sisters were my support this weekend (Diana being in Toronto) and hopefully this won’t happen again. Dr Ward intends to up the dosage a little of the tablet I take but understanding more does help enormously. My frame of mind was so much better as we left for St Joseph picking up Phil from the station on the way.

I suppose I should explain a little of what I am having surgery for……..! As you all know I have my team now set up at St Joseph’s and the team there have been great. I am also under the care of an oncologist at Sloane Kettering in New York and with another oncologist at Johns Hopkins here in Baltimore. We have been so fortunate in finding these amazing doctors and the most awesome thing is that they are all happy to work together to try and find the most suitable treatment for me. Yesterday’s surgery was for Dr Sidransky’s team to begin their molecular analysis of my specific tumour. In order to do this they need a sample of the tissue and any of the fluid around it. The surgery was done by Dr Krasna who is the head of the team at St Joseph’s and the results will also be forwarded to Dr Miller in New York! One of the studies involves bits of the tumour being planted into special imunosupressed mice! The cancers are then treated with different types of chemo to find the most appropriate drugs for me. At the same time there are some molecular studies being done on the rest of the samples. Of course I am giving you the briefest synopsis of this incredible procedure and I’m sure there will be those of you who want to read more. I will post the places to log onto so you can do that!

Dr Sidransky’s team met us the hospital. Sara is the director of the personalised oncology service and the nurse who explained everything again to us and Jim Martell who is the founder of this incredible Biotech company called Champions. Sara went into theatre with me and she collected the samples which were then speedily taken to the team waiting to do the implants at Johns Hopkins. Jim sat with Diana, Russ and Phil while this was taking place and he was a huge support to them all. Sara kept them informed of my progress and was there to explain again and again as needed! We actually all felt amazing and excited the whole day. It felt like we were part of new world treatment. This is how we can all hope that cancer treatment will be for everyone in the future. Personalised and accurate and with all doctors working together! We were like Trekkies with me as the Captain of the Enterprise going into uncharted territories! It is hard to describe a surgical day as uplifting but it truly was and we all appreciated very much the compassion and commitment from Sara and Jim. I saw them all in recovery and we had all spoken to Dr Krasna by then. The surgery went well, Dr Sidransky got his bits and we could not stop smiling! Dr Krasna did say that he did not find much malignant tissue in the fibrotic mess around my lung so we were overjoyed. I could actually feel myself not going into meltdown anymore! We will have some more results in 48 hours and of course I will keep you posted. I know there have been many calls at home from you all so thanks again for all the love and support. Especially to my Mom who has been in constant contact with all of us and is the core of the strength that we all have! Your "Adrinki" loves you very much!

Carpe Diem.

Chemo 2 (Round 5)

Monday came and went in the rain! I had so much to do before the surgery so the day actually passed quickly and of course Diana was on her way home! Fixed the broken tooth, copied all my medical notes for the millionth time and by 2pm I was back at St Joseph’s for a routine ECG for pre-op assessment and then my normal round of Chemo! By the time we left it was almost 6 and so Russ went off to Bikram Yoga and I went to fetch Diana! I can’t say I wasn’t anxious about the surgery tomorrow but I did feel a lot better than the past few days. I knew I had to get an early night because the next day was my surgery and an appointment with my psychiatrist….who would have thought that I would be putting those two words together…MY and PSYCHIATRIST! No jokes please!!

Carpe Diem.

Weekend update

Hopefully today Saturday we will go and visit Rob and I’m sure that will help too!

I will definitely update you all over the next two days especially as I have my London based secretary, therapist, confidant, and of course big sister back! What a deal. Phil, who holds equal status, may come visit from New York on Sunday. In some ways I am the luckiest son, brother, husband and father anyone could imagine. In other ways it's just damn unfortunate luck!!!

I really didn’t feel that great today but it seems that this is no longer an excuse for ‘she who must be obeyed’ aka my big sister! I was allowed a small extra nap after my 100th bath …it’s my keep warm method and it also mellows me for about ten seconds!. Anyway nap I did and then it was time for an outing. I really had to dig deep and force myself out so I booked a massage and Russ had a manicure! I did feel good after…good enough to drive around Baltimore looking for the Tulip Gardens that are hidden in an amazing area of a beautiful suburb! Just being out was good for us both but second time around we didn’t find the Tulips…!? Maybe tomorrow?

Another nap guaranteed post lunch and then off we went to see Rob on campus. Today is the Cancer Walk. Scores of young students walking round a track all night raising money for Cancer. The atmosphere was incredible,tents pitched to keep the walkers dry and rest the weary, food to feed the masses and all this on a Saturday night when they would all normally be out partying. I was really proud and appreciative of all their efforts. Once it started raining we left for home. Not a bad day considering how I felt in the morning!

Sunday and it’s Philly day! My little (middle) sister arrived at 10:30am and it was so good to be together. She came down on the early train from NY to play with us and she is no fool! She’d looked up the exact location of the Tulips and we were armed with a map! Now why had I not thought of that? Mike joined us for a breakfast at Lennies and then the three of us and Max went to see the Tulips! This is a huge area between some gorgeous properties that is planted by the neighbourhood each year and is filled with amazingly coloured Tulips and totally stunning azalea bushes. It was magical especially as it did not stop raining!

Phil left later that afternoon and Russ and I went to see Earth. What a great movie! Makes you glad to be alive in such a magnificent world!
Tomorrow Chemo and dentist! Did I mention that I broke a tooth eating PASTA!! Called Dr. Brewster (Diana’s boss) and she kindly fitted me in on Monday am. I’m just taking it calmly…never rains, just pours!!!

Carpe Diem.

Diana leaves for Toronto

I did manage to drive Diana to the airport with Russ in tow and by the time we got home I was exhausted and went to bed whilst Russ schlepped Mike to Bikram Yoga! And I thought I could rest…!!!

First a call from my Thoracic Surgeon Dr Krasna to say that he had spoken to one of the Oncologists I saw last week and that he was on board to operate and deliver the two nodules needed for the treatment I have elected to pursue. Then Dr. Sidransky called and explained the procedure again and as I was on my own I had to take all of this on board and prepare myself for Tuesday surgery! Russ and Mike came home with a little food but my mind was….well you can imagine!

So here I am at the beginning of a new chapter and although we have an amazing team here, New York and London I feel like I’m flying solo with no instruments and no fuel! My family are so supportive and really understand how fragile I become in these situations and I am trying to find the courage within to embark on this next stage.

I have realized that being with people is so much better for me. Mike had a girl friend over for dinner last night and sitting round the Shabbat Table together was great and I even felt quite normal.

Carpe Diem.

Our visit to st. Joseph

By Thursday morning we actually thought I’d caught something as the physical manifestations of my mood were so flu like that we went to St Joseph to seek medical advice! Thankfully all my blood work came back normal and we were assured that there was nothing lurking anywhere. They did, however, suggest I talk to someone and in true St Joseph efficiency by the time I arrived home we had a number to call and I am seeing Dr. Bemedek (Psychiatrist) tomorrow. In times like these we need all the help we can get to keep on an even keel so I will seek the help of this doctor too! All of this is so new to me…I sometimes cannot believe the difference in just over a year.

Carpe Diem.

Russ arrives

I’m back! I know you missed my updates but I’m really finding things very difficult at the moment and it may be a little easier to understand if I let Russ write a little!

I was actually feeling really good and I thought I was handling all the dramatic changes of the last few weeks with amazing positivity. We have been gathering information re my continued treatment, traveled to NY to see one set of doctors, then back to Baltimore to see another….so much info to digest and then the house and the sign went up and people came to view my property and what can I tell you!?? I just imploded.

Russ came in on Wednesday evening and she immediately knew that I wasn’t really present in any conversation and that the soft, hugely anxious voice portrayed a much more depressed person than I actually realized. Of course Diana was aware of the changes but there have been so many that she thought it was just a ‘bad day’. I felt hot and cold all night…couldn't get warm unless I had a bath, then too hot…couldn’t eat anything and the thought of Diana going to Toronto for the weekend on a long planned visit to her Dad made me sick with anxiety. Depression sucks!

Carpe Diem.

Weekend update

A work in progress. I promise.

Carpe Diem.