Day 11

A bit late on posting this today. Sorry. Last night I was moved again to a room with a view of the wheat fields. Amazing how the rows in the field of Sugar Beet have closed up and the number of fields that are yellow have reduced. Must mean that the OSR is almost finished flowering.
I had a bag of platelets the day before yesterday and am due some blood as soon as they have matched me up. I’m a bit anaemic. My neutophils are still zero, but any day now I hope.
I have had a bit more sickness today, but it seems to be under control at the moment. Such a pain as I really don’t feel like eating as a result, either.
Sorry, that’s about it. I’ll try and be more inventive tomorrow

10th day post transplant

Good nights sleep last night. I think the worst of the effects of the chemo on zero-1 must be wearing off. Mostly. So it’s a rather boring waiting game from here on in.
What I miss most at the moment, is the outside world. Here I mean ‘things wot grow’. I’m constantly asking my family for details of such and such a plant, and what is it doing. A colleague sent a brief rundown of how our fields are at the moment. It was excellent; I was able to imagine my way round for at least half an hour. I’ve been glued to the RHS Chelsea flower show. I suppose I’ve spent my working life involved with the ‘outside’ so it must be second nature. Even though I seem to spend 80% of my time behind a desk these days, there’s no substitute for pulling on your wellies.
No other news I’m afraid, although I believe the Cambridge beer festival is on at the moment.

Ready for the Dunes!

Things continue to go great for Mark. As of yesterday, he is no longer taking the Dexamethasone and Velcade, and the good doctor gave him permission to go have some fun.

Mark spent the past week packing up his trailer — something that usually only takes a couple of days. He is so excited to be going to the Dunes with his brothers and friends.

He’s had an issue with his knee and has been using a cane. They will look into it further after Memorial Day. According to the doctor, it’s nothing that should stop him from heading out for the weekend. Dianna has been questioning the doctor about a medication that Mark has been taking called Levaquin as it can cause weak and ruptured tendons. However the doc says he is not taking a strong enough dose to cause any harm. Just cross your fingers that it’s not the Myeloma that’s attacking a weak spot.

The next appointment is on Tuesday with Dr. Zangari. They will also go over the treatment schedule then but it looks as though the second transplant could take place on June 1st. Mark will have his port put back in on Wedneday.

Mark and Dianna are very optimistic and looking forward to a summer of car shows and playing at the Dunes.

Our thoughts and prayers go out to Kim and Denese. Kim has been very sick and in the hospital after having his second transplant.

Also, good luck to Kevin and Jackie with his transplant.

Hope you all have a great Memorial Weekend.

Day nine

Interesting day yesterday. I’m glad I commented on the wheat as I can no longer see it. Don’t panic, blindness isn’t a side effect, they just moved me to another room on the other side of the building. So now I have a view over the city and in the distance, presumably over Grunty Fen, I can see Ely Cathedral, If the light’s in the right direction. Nice to have a change of view.
I was taken for a chest X-ray this morning. Don’t know why.
Yesterday I had a really good day. I think it must be pay-off day today as I’m not so good. Slight headache, sickness has returned, and I’m very tired.
Thank you all for your kind comments, and Lynda for keeping the household running and for the latest news of our wildlife and plants etc.

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Day 8

The day dawns and I feel so much better – with provisions of course-. Sickness seems to be under control, but if it’s not one end it has to be the other. No details will be provided. A gentleman must have some secrets. At least I can eat. I would recommend the ‘C10’ diet, I’ve managed to drop 8 kg since I arrived (that’s about 18 Lbs for our imperial cousins over the pond). This is probably the lightest I’ve been for about 20 years, which just shows how fat we get without really thinking about it.
There’s a wee man in my toilet today. Just to confirm it’s a workman fitting some new grab handles.
I’ve managed some lunch today – Shepherd’s pie, and it’s stayed down… so far.
A nice day over the Gogs, the wind seems to have dropped today judging by the trees. The Wheat isn’t in ear yet, but it’s couple of weeks early yet, I may just see it before I go.
Right, off to my Stats package to construct some data for you…..

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Day 7

Sorry stuck with me again as Charles is feeling poorly again today. His temperature is up (38)which is worrying although the medical staff all seem very relaxed about it and have said people often get temperatures and they wont increase treatment unless it stays at 38 or if it spikes to 38.5. He’s actually been running a low grade fever for the last few days but this has gradually increased throughout the day.

His main problem seems to be the nausea, which they are struggling to get under control. He is on 5 different anti sickness drugs but still not getting it under control. He has been referred to the palliative care team in the hope they may come up with a different / better combination.

His blood counts remain very low although he doesn’t need another transfusion yet but they check them regularly. He has his drip back up so they are keeping his fluids up and also giving him potassium through the infusion as his potassium levels are low.

He is currently sleeping so thought I would catch you all up. I guess he may add his own blog later but for the now thanks again for all your messages.

Love Jeanette x

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Day 6

Day 6 is up and running. Better today with less sickness, although the dawn chorus was accompanied by the sound of retching. Strange, it passes me by and I carry on afterwards as though it was quite normal. Perhaps it is, although I thought I came from family of ‘sensititive sickers’.
I had meant to listen to the end of the ‘Test’ but I fell asleep and I missed it, I’m sure there will be opportunities later in the season.
My bloods came back earlier and I’m officially neutropenic (zero neutrophils), so from here on in it’s a waiting game for my transplant to graft and my counts to comeback up, usually about days 10 to 14. I will be keeping a graphical record of these and probably publish them here if anyone is interested.
Busy day today with lots of visits, both personal and official, which passes the time, but is exhausting.
Later..

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May 2009 Update, it’s now active Multiple Myeloma

Hi all,

I went for my follow up appointment yesterday to get the results of my bone marrow biopsy and other tests. My case had been put to a panel of cancer specialists and it has now been decided that my new diagnosis is full blown active Multiple Myeloma. I start chemotherapy on June 25th 2009, I have been allowed to go on holiday for a month before I start the treatment, so I am off to Ibiza (Spanish Balearic Islands).

My diagnosis has been based on my free light chain ratio which has been doubling ever month since November 2008, my bone marrow plasma cells which are now 60% (normal is 5% or less). I also have Bence Jones Protein in my urine which I have not had before and my haemaglobin is borderline and so is my albumin.

The chemotherapy will last about six months and the protocol they are using is called CTD, it is all taken in tablet form. The CTD stands for the three drugs they will use which are Cyclophosphamide (chemotherapy) Thalidomide (immunomodulatory) and Dexamethazone (stong steroids). After the six months chemotherapy I will be given a stem cell transplant using my own stem cells, followed by a second stem cell transplant using related donor stem cells which will come from my Mother or Father because unfortunately I do not have Brothers or Sisters which would be the preferred choice for the transplant.

I am in really good spirits and carrying on with life as normal and still doing my degree course and my hobbies. What’s the point in worrying it will change nothing. I am a happy cheerful person with a zest for life and my illness will not take that away from me !!!

I will update again with more info very soon, best wishes to you all xxxxxxxxx

Gaining Weight!

Mark had an appointment on Wednesday at the hospital and everything went well. Besides being a little grumpy, Mark is doing great. His appetite has come back with a vengeance and he has gained 11 pounds in a week! Blame it on Mexican food, ice cream and chocolate donuts.

Mark, Wes, Shane and Colton went to the Dunes last weekend for about 4 hours and it sure got Mark juiced up for Memorial weekend. We’re told he was a good boy and stayed off all the toys.

Good luck to Kim. His second transplant is today.

A note to John & Evelyn Montoya — If you see this post, please contact Mark & Dianna.

Happy Mother’s Day to all you “mamas” out there.

Oregon Coast

Well it’s been another month. My M-spike (monoclonal protein expression) a little over doubled from 125 to 289 mg/24 hrs this cycle. I didn’t take any supplements… This level of expression is still quite low and could be just part of normal fluctuations. I expect the curcumin, flax & epa/dha oils, vitamins D & K2 and Revlimid to kick butt again this cycle.

We are vacationing on the Oregon coast this week. It is awesome as always. This afternoon we drove up to the top of Mt. Hebo. It was incredibly windy, cold and desolate. Not a soul to be found. So of course we took an inviting logging road instead of the boring paved road down. About a half hour later somewhere on the side of the mountain in the middle of the Siuslaw National Forest on a far less inviting narrow steep deeply rutted part we get a flat tire. Finding, extracting and installing the spare added nicely to the adventure. Then this pickup appears – on a Tuesday, coming towards us, up the mountain. This guy who acted like Mary Poppins announces he is here to feed the birds. Huh? We are on the side of a mountain on a logging road, what gives. “Oh watch, this place will be crawling with birds in a couple minutes.” Sure enough he was right. So much for the high winds and chill hunkering all the birds down as it had all day. It brings a smile to my soul recalling how this all just happened.

The Gray Jay, Perisoreus canadensis
May 6th, 2009, Mt. Hebo, Oregon