Treatment Plan

Just a quick update on the medical consultations today, confirmed as feared the dive into stem cell therapy, with conditioning chemo.

This week and next I will have a series of tests on lung, heart and kidney function so that they team can judge how far they can push my chemo and establish base lines for those functions. Hickman line will be implanted between Christmas and New Year (direct line to the vein above my heart which dilutes the chemo so enabling high dosages and avoids damage at the point of injection). This will require regular visits to the hospital to keep it sterile and clear.

Chemo 1 of three preconditioning chemos will start on Jan 3rd, first day after new year here in Scotland, when they have a full crew on at the ward to deal with high dependency patients, each chemo cycle will be one week in hospital and two weeks recovery, there will be three cycles of this preparatory chemo, which will knock back the disease and get my stem cells into overdrive. In this case I will be very sick and then very vunerable to infection when I am at home. We have already developed a plan for me to have the bedroom/bathroom/study upstairs as a "controlled isolation zone" for my recuperation during the weeks at home to keep the interactions with the kids, and transmitted infections to a manageable level. Hopefully Poppy will be OK with that as she has her heart set on that bedroom.

At the end of Chemo 2 they will rescan to ensure that the disease is responding to the chemo properly (as it, or a clone of it, ducked AVBD chemo we need to make sure it is not resistant to this chemo). Presuming that the chemo is working, then the team will harvest stem cells from me at the end of chemo 2 and chemo 3 to set up for the deep chemo, which should be around mid-march depending on infections and response of my blood counts. During these chemos I am likely to need platlets, blood and antibiotics plus lots of medical support. This is a different world from the cruise of AVBD chemo.

I then go for the deep dive of the stem cell replacement therapy, this is six weeks in hospital with "industrial scale" chemo as the nice doctor Scott put it today. Basically this means that they will try to kill all my immune system, bone marrow and cancer while, just, helping my heart/kidneys and liver to survive. The good news is that they are pretty good at managing this balance, as hard as that may seem, and the doctor said today that they only lose 1% of the patients - which is great given the wobbly and near death situation of many of the patients is a really good record. So bottom line this treatment is going to be tough but its not likely to be fatal.

That was some of the good news, some of the not so good, or sobering news, was that the success of the treatment is totally eliminating the disease in the whole population that make it this far - is around 50% - for subsets of the population like the ones who are responsive to chemo and have the right prognostic factors (like I may have, depending on the results from London which are not yet available, and those in the Mayo study) then this rises, but we need to be realistic here this is a tough fight, and while its not likely to get me in the short term, there is some reasonable chance it, or complication of the treatment, may get me in the mid term. Clearly I am setting up for the fight here and have my mental light saber out and ready for the fight. Lee was quite funny today as she said that the only thing that worries her is that this is Gerry Mulligan vs Gerry Mulligan's immune system - in any fight of me against the world she would back me which is sweet.

So we have a plan, its all a bit sobering, but at the same time it is a plan and I can get my head around it, Lee and I came out of the hospital and decided to go to lunch, the strange thing is I am fine, symptomless and fit, so we had a really nice lunch (excellent Pinot Noir with pigeon) and just made it back in time for Holly, in fact I had to jog for half a mile up the road to catch her and I am supposed to be the sick one ! So after some nice wine I only had the energy to call Mum and Philip my brother before resorting to blogging and music, so far the Valkyries, Dexys and Dire Straights have made the list while I type the blog to keep you all updated.

Lee has poured me a nice Pinot, and is selecting the music as I type this, though I have cut in with a request for the Cowboy Junkies, we have had a deep heart to heart over lunch and have sorted out how we are going to handle things, both good or bad, this experience has continued to help me realise how much we are entertwined, and how deeply I love her. Just before she remembered as we were listening to some music, a lake we had been on in Germany and I interjected "Konigsee" as she had forgotten the name. I realised, and foolishly said, that I am the only person in the world who would know the answer to that question. As you might imagine that was "a moment" in our oscillation up and down in the emotional stakes. Now we are listening to Mozart, the Marriage of Figero, which I would not have come to appreciate without her. So we are having all sorts of mad thoughts of what to do prior to chemo start, we know we will go to Ireland to see my family, and to Aberdeen to see Lees family, but in between we may have a few indulgent days away taking the car up north with the kids and staying in some castle/spa for a few days before I dive into the vortex of treatment.

So kids are sitting doing their homework behind me, tea is cooking, Mozart is on the stereo, strangely I am chilled out now that I have a plan and that lee and I have agreed to sort out the practical details ahead of Jan 3rd, so I feel that "my back is covered" and I can concentrate on beating the disease - which I fully intend to do. In the meantime I recommend Mozart's clarinet concerto 2nd movement, remember Poppy plays the clarinet and it is a beautiful instrument.

Enough blogging for now, some real life to live as well, for the gap between now and then the best feeling I can use to describe it is the scene in the movie "the perfect storm" where they find themselves in the eye of the hurricane. Myself I would have dumped the fish and used the GPS to stay in the centre of the storm, George Cluney on the other hand did not take these precautions, so I have confidence that my more practical approach will lead to a better outcome. Oddly that scene has haunted me since the start of this adventure, I have often mentioned it to Lee, I guess I somehow knew that this would be a fight, and it will be a fight. The good news is that I think I have got my mind and head out of the zone of uncertainty and into the zone of facing the challenge ahead. In between I will try to combine being sensible in my build up and enjoying things as much as possible.

As I type Poppy is trying to organise her friends to come round for a pre end of term-disco pizza and dressing up, she is so excited about the whole event, which is really sweet.

So cheers for now, with a plan we are more comfortable and indulgent, I hope the world is good with you all, just now its fine for us, after 3rd Jan I will be in a different world where each day will count as a step forward.

Cheers

Gerry