Day 23

Gerry, Gerry, Thanks for the package. Yes the dots are interesting. For those not in the know, Gerry sent me a huge package of Sweets (Candy) and other stuff, from the US . Still finding more varieties at the bottom of the box. Too kind.
Quiet day today, trying to get all Sam’s washing done and one or two other personal objectives.
I feel OK but perhaps a little unwell. Too many sweets.

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Strapper’s Journey 2009-06-03 22:02:00

The change

Okay everybody, Steph has got so busy building a new company for her job and trying to spend some quality time with her family we have decided to let me take over the blog for a little while tell Steph can come back.
First we would like to thank Steph so much for all she has done with this page and hope that I don’t mess up all her hard work. Thank you Steph we love you.
So I would like to let everyone know I am not as great as Steph at this stuff. So if you will bear with me I will try to keep you up to date as things happen with Mark and his treatments.
Any questions or advice please e-mail or comment me, I will take any I can get.
So let’s back up to Memorial weekend.
Mark was given the okay to go to the dunes. That made him real happy sense he missed Easter weekend. Three of his brother’s and their families came out. Even his Dad & mom came for a day. A lot of our friends were there to help him out.
Mark took his rail to Delta on Saturday to some sand drags that were in town just to see what it would do. He said he heard the Doc say “no riding” he didn’t hear “no driving”. He was careful though.
Mark said he was happier to be driving his semi down there than to be going to the dunes.


This is how Mark likes to travel


This is what friends and family have to do when you brake your toy’s

Okay funs over.
Mark has his schedule for the second transplant. He had his new port put in last week and know he is doing all the testing before transplant. He did labs, pulmonary and ECHO today. Thursday is MRI and CT’s. Friday is the bone biopsy. We meet Dr Zangari on Wednesday the 10th .On the 12 he will start the chemo for four days. If all goes according to schedule then he should transplant on June 16th.
Again Thank you Steph and bear with me everyone.
Also thank you to all of you who do watch Marks blog page.

Strapper’s Journey 2009-06-03 21:02:00

The change

Okay everybody, Steph has got so busy building a new company for her job and trying to spend some quality time with her family we have decided to let me take over the blog for a little while tell Steph can come back.
First we would like to thank Steph so much for all she has done with this page and hope that I don’t mess up all her hard work. Thank you Steph we love you.
So I would like to let everyone know I am not as great as Steph at this stuff. So if you will bear with me I will try to keep you up to date as things happen with Mark and his treatments.
Any questions or advice please e-mail or comment me, I will take any I can get.
So let’s back up to Memorial weekend.
Mark was given the okay to go to the dunes. That made him real happy sense he missed Easter weekend. Three of his brother’s and their families came out. Even his Dad & mom came for a day. A lot of our friends were there to help him out.
Mark took his rail to Delta on Saturday to some sand drags that were in town just to see what it would do. He said he heard the Doc say “no riding” he didn’t hear “no driving”. He was careful though.
Mark said he was happier to be driving his semi down there than to be going to the dunes.


This is how Mark likes to travel


This is what friends and family have to do when you brake your toy’s

Okay funs over.
Mark has his schedule for the second transplant. He had his new port put in last week and know he is doing all the testing before transplant. He did labs, pulmonary and ECHO today. Thursday is MRI and CT’s. Friday is the bone biopsy. We meet Dr Zangari on Wednesday the 10th .On the 12 he will start the chemo for four days. If all goes according to schedule then he should transplant on June 16th.
Again Thank you Steph and bear with me everyone.
Also thank you to all of you who do watch Marks blog page.

Day 22

I’m well folks, sorry I’ve been quiet for a couple of days, when I haven’t been so good. Came out of hospital and felt great for a day or two – GCSF and euphoria – then I went downhill, felt sick and very very very tired. Yesterday I went in for blood tests. Neuts- 0.68 WBC 1.3, lower than when I came out but still OK. After that I think I slept for the rest of the day and night and was grumpy in between. To misquote Grauco Marx to a hostess, ‘ I’ve had a wonderful day, but this wasn’t it’.
My bike arrived yesterday, actually I think it may be a ‘Vincitore’ which is better than a ‘Strada’, which I am pleased about, but the paint job, though adequate, has spoilt some of the nicer features. For one the serial number is obscured so I cant find out for sure which model it is, or the age. I may need to get it resprayed.. Perhaps I should ride it first.
Yesterday was my 3 week post transplant anniversary.
So today altogether better, though still very weak and tired. Although I have eaten better today. Take it day by day and compare weeks I was told yesterday. Good advice.

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Cycling Continues

I’m referring to my ad hoc clinical trial of one in which I cycle the use of curcumin. A bit of background info is probably needed so bear with me.

Back on September 9th of last year I started on 28 day Revlimid+Dex regimen (25 mg days 1-21 + 20 mg days 1, 8 & 15). After a 75% reduction in my protein expression in the first 3 cycles dex was stopped. A further 10% serum protein reduction was achieved in the next 2 cycles as well as improvements in antibody levels and lambda/kappa ratio. The 6th cycle saw a 10% increase. A supplement regimen was started at the beginning of the 7th cycle which consisted of C3 complex curcuminiods (8 gr), organic flax seed oil (1 gr) and EPA/DHA (860/580 mg). A 3% decrease in protein expression was seen.

Was the response just a normal fluctuation in expression or correlated with the supplementation? The synergistic effects of curcumin with bortezomib and thalidomide have been observed by Aggarwhal’s group at MD Anderson both in vitro and in a xenograft model in nude mice. (http://tinyurl.com/c2hlfx) So to address the question a cycling of supplementation vs. no supplementation was started. Relative to the previous cycle the trend is:

Cycle 7 (supplementation) 11% decrease

Cycle 8 (no supplementation) 45% increase

Cycle 9 (supplementation) 24% decrease

Cycle 10 (no supplementation) ???

I’ll let you know what happens this summer (June 22nd)…

Enjoy the rest of spring and cycle if you can! I’ll be waiting for a heat wave reading a good book by the fire at our camp.

The Most Important Relationship…..

We all treasure our relationships with those we love. We love those in our family and we love those we call friends. There are, of course, different levels of intimacy involved in different relationships. We share more information with certain others more than others. We share more thoughts with certain others more than others, and I suppose that is just because we feel an increased level of intimacy with some people more than others. The most important relationship that we are honored to have in this lifetime though, in my humble opinion, is the relationship we have with ourselves. To strive to build an honest, loving and truthful relationship with ourselves is the one most important thing we can do for ourselves AND for those we claim to treasure and love. Getting to really know how you feel (using feeling words, not thinking words), makes us truly who we really are. Once you become acquainted (or re-acquainted, as the case may be) with yourself, the next level is being able to express those feelings with those we love. I’m not talking “generic” either, I’m talking specifics. I love you because you make me feel___________. I love you because when I’m with you I feel ____________. I love you because when I think about the time/times when we ____________, you made me feel _____________. These are just a few examples of what I’m talking about. To be able to express ourselves at this level, at all times, is what I think we should all strive for. Can you imagine leaving a greater legacy than being remembered as a person who was truthful and loving and honest in all of your relationships? And not even remembered per se, just being recognized and respected and loved NOW for being that kind of person. I know that I WANT to be remembered for being THAT kind of person first and foremost, and recognized now that I am following that path as we speak. It is very important to me. To be able to reach this higher level of consciousness, however, takes a constant striving on our part. An active working on ourselves and the way we feel and a continual consistant way we express ourselves to those we love. What we need to remember though, is this is an ongoing process. Life is a continual process. There are the proverbial 2 steps forward and 1 step back in all our lives. It won’t happen overnight, if you haven’t begun to explore that part of yourself, nor will it be a one time deal. Getting to truly know and love and forgive and like and be honest with yourself is a constant, daily (minute-ly, hourly) process. I cannot think of a better, more loving way to communicate with those we love though. To be your own true self and be comfortable in your own skin and be able to share that with others is such an honor…..to yourself and to those we love. I think we all need reminders now and again, of what our priorities are in life and I just wanted to share one of my most intimate priorities.

Day 18 – early

Woke up at 5 this morning. Bit excited. Found myself planting some spare tomato’s in the border before 6. Must remember to take it easy…
Great to arrive home last night, although it was a bit of a last minute deal with the doctors. Spent the first hour at home being sick, so that was nice for everybody. Pretty exhausted last night , but it was really nice to feel the sun and the breeze.
DL – the pedals are fixed. What I didn’t tell you was that I also bought one. A Mercian Strada Speciale. So I can hang that up next to Jeanette’s when it goes rusty (www.merciancycles.co.uk)
Look forward to the Pimms, Helen.
I’m not out of the woods yet folks. I still have no immunity. So I need to gradually expose myself.. no I need to gradually become exposed to the myriad of infections out there. I’m down to about 14 stones/88Kg/196lbs, most of which is muscle wastage rather than fat loss, exercise is required, which I hope to build up gradually. I had thought of doing the London to Cambridge bike ride at the end of July, but I’m not sure if I have enough time to prepare.
Off to the Hospital now.

Day 17

OK I have had my blood results. Neutrophils = 1.14. In theory this means I can go home. Doctors are pontificating at the moment as last night I had a turbo boost with an injection of GCSF. Kind of a ….well, a turbo boost for my cells. So they are concerned that the count may go down again. So we are waiting to see what happens. I’ll let you know.

16

Late again. Not that I’ve been busy. I was playing cards with Alice, who dropped in to see me. That’s my excuse. I’m sticking to it.

Blood results are the same as yesterday which is encouraging. They still expect me to be out sometime over the weekend.

Not much to report, just a dull waiting day.