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Beth

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The visit.

Yesterday after Pollyanna had come and gone, delighted with her birthday gifts and copious amounts of kisses and cuddles, they are never too old for those IMHO (for those not so keyed into text speech this is translated into In My Humble Opinion ), Louise and Daria turned up. Louise is my extremely efficient, on the ball, lovely pain nurse and Daria, my psychologist who I have certainly met my match with and very skilfully doesn’t allow me to try to take over the therapists role. Louise in her usual efficient and assertive manner soon got hold of my GP practice and arranged for me to collect some old and new pain reducing medication. Daria who I am sure she brought along to check that I wasn’t cracking up, and could do a mental health assessment on both Colin and I, meanwhile talked to us both about how we were coping. I seem to not be able to switch off the waterworks at the moment, and through my tears I spoke of my struggle with the pain and tiredness I was experiencing. I was also able to share my frustration at having my harvesting postponed as I had seen this as the last bit of treatment for a while, and that after this, I could get on with recovering and returning to a normalish life, at least or a while anyway. By the end of our conversations I think we all agreed that both Colin and I were going through very natural responces to the situations we found ourselves in and there was no need for extra medication ie. anti depressants for either of us, at this moment in time.

How to be depressed

How to be depressed

The rest of yesterday was spent mostly sleeping and catching up on our recorded programmes such as the last and very brilliant, IMHO (are you getting the hang of this now mum?) episodes of Scott and Bailey.

The sun is shining this morning and today there will be more birthday celebrations for Pollyanna, (she like’s to extend her birthday for as long as possible), and Granny (mum) will bring along a birthday cake and we will be joined by Jem and Elliot for lunch. This is all before Pollyanna and a Rob jet off for a dirty weekend to Paris. Whoops, Pollyanna will never forgive me for this, she doesn’t do dirty weekends, so what I meant to say was that she and her boyfriend were off for a cultural visit to Paris where they will both explore and learn more about the architecture and history of the city.

I am looking forward to having them all here today, but I know I will pay for it later, as I will feel even more exhausted and find it difficult to stay awake for Britain’s got Talent. It will still be very much worth it, especially as Elliot is growing up so fast that even a week makes a difference.

I hope you all have a very exciting weekend to look forward to, if not you can always make your own excitement and I can thoroughly recommend conservatory camping, for bringing on the romance and livening up your relationship. If you haven’t got a relationship or a conservatory your b******* and at this drug fuelled moment I haven’t a clue what to suggest, perhaps a jigsaw puzzle?

Best wishes and do whatever it is with recklessness, after all you only have one life and you never know when that one’s going to be up!

Deborah xxxxx

Posted in deborah bone, general chit chat, mental health, mutilple myeloma, Myeloma Blogs, Pain management | Tagged , | Leave a comment

Still Here

I know I’ve been missing in action since Daryl passed away. I’m afraid I’ve been in a bit of a fog. It’s hard to concentrate or focus on many things right now. I find myself wandering from room to room in our condo, not sure what I want to do next. And mostly, I’m finding it hard to express myself with the written word. There is so much building up inside of me and I know I will want to share my feelings with all of you at some point but everything feels so raw right now.

Today was exactly 7 weeks since Daryl passed away. It feels so long ago. Sometimes I can’t imagine how I will survive as I go forward. I already hate this “being alone” thing. I have never lived alone. I was married at 18 and moved right from my parent’s home to our home together. If I thought our lives were quiet when Daryl was still here, it was nothing compared to the silence I’m now experiencing.

Please be patient with me. I’ve written some amazing blog pages in my head when I’m not anywhere close to a computer. I just hope I can remember some of it when I’m ready to share it here. :-)

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Contest Winner Revealed From May 17 2013 Photo Entries of Visitor Faye Helping Around The House

And now the CONTEST WINNER 

Remember, some of the Faye photos helping around my house were staged and some were real. Which tasks were STAGED?

There were 5 Staged Activities depicted:
  1. Mowing the Lawn
  2. Weed eating the Lawn
  3. Washing the kitchen floor on her hands and knees (although she did use the mop)
  4. Washing Jonah-the-car
  5. Lilac bush planter
Only 1 person identified all 5 staged activities that entered the contest, but she also identified a few “actual activities too”.

Yes, Faye did these actual activities:
  1. Pooper scooper (with a smile)
  2. Bed Changer
  3. Cleaned all the toilets
  4. Transported the the cleaning supplies
  5. Laundress
  6. Vacuumed whole house
  7. Washed many many dishes
  8. Scanner  extraordinaire, scanning over 158 ancestry documents
  9. We did let her eat one little yogurt for lunch, and
  10. Yes, she did inherit my PhD graduation hat, as she has a PhD TOO!

 But, the contest manager (me) decided the winner listed below did the best….

And the winner of this authentic MACKAY, IDAHO one size 
fits all cap is Amber Sayer Walker

Amber, let me know where you want me to mail your hat to. 

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Take a step that is new ….

I’ve been going through some old photos, and I noticed something. Whenever a race photographer takes my picture as I’m crossing the finish line, I don’t even look like I’m running. I look like I’m standing there, balanced on one foot, just like Replacement Chrissy in the opening credits of Three’s Company. 
Exhibit A.

 See?

Come and knock on our door …

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Skeletal Breakdown

“Wow.” I said to my wife. She looked at me with an eyebrow raised. I nodded at the television which was explaining that an I-5 freeway  bridge over the Skagit River had just collapsed. It happened in Mt. Vernon, Washington, halfway between Everett and Bellingham. Okay, this is Washington and so no one knows what I’m talking about. Let’s just say it happened on the only freeway between Seattle and the Canadian Border at Vancouver. It’s not like the bridge collapse in Minneapolis a decade or so ago, but for us, it’s a pretty big deal for us hicks in the Pacific Northwest.

When that bridge in Minneapolis failed it caused quite a stir, and an assessment was made of the highway infrastructure in general. While the freeways have been added to here and there, President Dwight Eisenhower (who instituted the idea of freeways and put serious national funds behind them) was the last president to spend serious money on interstate highways. Since his administration, freeways have been more of a vehicle for pork barrel politics than a real attempt at encouraging interstate commerce. Eisenhower was also thinking of transporting the military in case of an attack on the country, which, strangely enough, is the thinking behind the Internet. It was invented as a means of communication that would stay functional by virtue of a zillion different pathways in case our infrastructure was damaged by attack. Way to go Advanced Research Projects Administration (ARPA) and the National Science Foundation, who copied the idea from Swiss scientists at CERN. (No, neither Apple, nor Microsoft, or Al Gore had anything to do with it.) Anyway, after the bridge in Minneapolis fell down, the highway infrastructure and particularly its bridges were surveyed and assessed and we found out that we hadn’t done squat about maintaining our bridges and it showed. Headlines swirled everywhere about it, the text below the bar explaining that we were going to see a lot more bridges fall down in the next fifteen to twenty years if we didn’t get off our butts and spend some money on our highway bridges.

Rather than deal with the bridges, instead we chose to spend our national dollars on a few wars, bailing out the financial woes of our dishonest financial organizations, bailing them out again and then a couple more wars. Given the low return we got from where we spent our hard earned trillions of dollars, I have to wonder what our bridges and roads would be like had we spent at least some of that gargantuan sum on our infrastructure.

Climbing into the Wayback Machine, I wave to Mr. Peabody and revisit an idea I had, well, way back. I wondered why the US didn’t continue or amplify the old VISTA project. Jack Kennedy started it: Volunteers In Service To America. It was like the Peace Corps except local. It occurred to me that we should have a military branch that wasn’t military. Ergo, those with aversion to violence could still participate in clear conscience. The idea is to have a branch of the service that works on the infrastructure and works in liaison with its research and development. Those who complete a three or four year hitch get the same benefits that veterans with similar service do. I got the idea from author Robert Heinlein’s depiction of future society. There were two classes of people: the population and citizens. Citizens were members of the population who did a hitch in government service, and as such were provided with education, health and employment priorities. While Heinlein was a rabid conservative that makes the most outrageous Tea Party Republican look moderate, some of his ideas were spot on in terms of both viability and public acceptance and participation. The idea of the military-like benefits for non-combatants being one of them. Such a thing would go a long way to improving our current situation with roads and bridges, while also producing jobs and economic growth.

We’re already looking at more efficient and safer transportation. The concept of computer driven cars –vehicle autopilots– is catching on seriously. A number of highways have already been improved and fitted with cabling that works with the developing autopilot systems. Why not go all in and encourage overall improvement, so that we have highways and bridges for autonomous cars to use. A focus on interstate and intrastate travel is wise. Our bridge over the Skagit River is the most recent domino falling. There are more to come, and as they say in science, the failures will increase in logarithm. That means that the more time that passes, the more frequent the failures will get. Fortunately, no one was killed when the I-5 bridge fell into the river, which is a happy end note. Other bridge failures have not been so kind. Our highways have a similar cancer eating at them as those of us with Mutiple Myeloma. Our skeletons are rotting. The difference though, is huge. We can cure the infrastructure if we choose to take the treatment.

 

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Wetter 2013 ?

Das Wetter spielt dieses Jahr bisher auch am Gardasee verrückt. Soviel Regentage wie in diesen ersten 5 Monaten hatten wir hier noch nie erlebt. Üblicherweise ist es vorwiegend Sonnenschein gewesen und man hat sich über 1 Tag Regen für die Natur gefreut.

Jetzt ist es fast umgekehrt, es sind bisher fast mehr Regentage als Sonnentage. Und richtig warm will es auch nicht dauerhaft werden.

Gestern war aber ein herrlicher Tag mit viel Sonne. Am Abend kam dann aber durch die herannahende Kältewelle ein riesiges Gewitter mit Sturm und Starkregen. Und heute regnet es den ganzen Tag bei Tagestemperaturen von ca. 6 bis 8 Grad.

Unvorstellbar, daß ich es gestern fast geahnt habe und noch schnell eine schöne Radtour über 28km gemacht habe. Diese Radtour mit den tollen Ausblicken auf die paradiesische Natur hier in der Umgebung von Garda ersetzt jeglichen Bedarf von “Antidepressiva” und macht Kopf und Seele frei und beschwinglich.

Hier einige Fotos, die ich gestern während der Radtour gemacht habe. (zum vergrößern, die Bilder anklicken)

SAMSUNGSAMSUNGSAMSUNGSAMSUNGSAMSUNGSAMSUNGSAMSUNG

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The Birthday Present

When I woke up this morning, my body decided to give me a nice big birthday present wrapped in red… Some would say that my body was being thoughtful, but I am undecided.

And so, after three months and some embarrassing hot flushes later, I can confirm, that as of this morning, I am no longer in fake menopause.

Yayyyyyyyy!

This is just what I want on my birthday, it is up there with the rain. If memory serves, this will not be pleasant.

Posted in blood, drugs, Menopause, mutilple myeloma, Myeloma Blogs, NHS | Tagged , | Leave a comment

Thank Goodness…

….that today I am seeing my pain nurse as I certainly have a lot to talk to her about and desperately need her help. The pain last night had reached its peak I hope, because surely it can’t get any worse. I must try a new type of pain killers because I am not sure the slow release morphine is doing the job. I don’t like to moan about it all the time, but last night I cried. I cried because of the pain and because I was sad. It is therefore a good job that the pain killer nurse is coming along with my psychologist as I need her too.

We are still camping out, or rather in and I am watching the grey skies and listening to the rain slash down on the Perspex roof. Today is a good day because it is the day my beautiful first daughter was born. I loved her from the very first moment I set eyes on her, or probably before. She has, and continues to, fill my life with joy and when I see her the sun comes out. She is sunshine and I couldn’t have picked a more perfect name for her than Pollyanna. Bright,funny,witty,generous Pollyanna, her mothers pride and joy. Stepping in my footsteps in the NHS she will make a difference as I have always strived to do. Today is her day and we shall rejoice (after I have seen the health specialists).

Day One

Day One

HAPPY BIRTHDAY POLLYANNA

May all your dreams come true. Enjoy life to the full and always look for the best and you will find it. Go out into the big world and share your sunshine so other people will smile in your presence and feel your warmth.
image

Have a lovely day everyone and make sure you look out for the sunshine in the rain.

Deborah xxx

Posted in birthday, general chit chat, mental health, mutilple myeloma, Myeloma Blogs, Pain management | Tagged | Leave a comment

Well, back to square one!

Never thought I’d be typing this soooo soon!

The latest results
M-Protein number:  In October 2012 when diagnosed it was 57.  It got down to 14 in February.  The latest count was 44. (should be zero)

Hemoglobin:  In October 2012 it was 67.  It got up to around 114.  Today it was 77.

CT Scan: Head was clean of plasmacytoma (tumors).  The chest area showed a lymph node of 5cm.  Considered large by the Doctors.

The Plan
1.  Basically the current chemo treatment stopped being effective.  They have removed the Velcade needle and are replacing it with Revlimed.  Pills every day.  We were told that this is a very old drug used to reduce nausea with pregnant women.  They have found out that this particular drug is very effective for myeloma patients.  Also, the Dexamethazone (steroid) is back but more often.  He’s to take it 4 days on 4 days off.  Basically, they are giving him a higher dosage now to give it more effect.  Cramping is another symptom, so hydration is important.  They recommended tonic water.  This will go on for a further 4 months till they even consider a stem cell transplant.  Also, provided his numbers go in the right direction and is tumor free.
2.  Princess Margaret Hospital needed to rule out a tumor in the brain.  Even though a CT Scan was done and showed negative, they needed to extract fluid from the brain to test.  They did this by drawing fluid from the spine.  (4 vials of fluid).  He was very brave today.  And, me, I survived this procedure too!  I stayed in the room.
3.  To get the hemoglobin increased, they are doing a blood transfusion tomorrow at Humber River.  Probably two units.  They also prescribed Eprex, which helps stimulate the hemoglobin. This is the needle once a week that I had a tough time doing.
4.  Radiation is necessary for the scrotum area to rule out any possible “leftovers” from surgery.  He will be having 10 treatments once a day for 10 minutes each time.
5.  As for the lymph node, it should shrink with the chemo pills he is taking.  They will follow up with a CT scan in about 2-3 months to see the size.

Final Thoughts
This explains many things.  He’s been so tired lately and very lethargic. Anyone with a Hemoglobin count of under 100 will feel their energy level low.  So, no wonder!  Poor Tony.  He was so brave and positive today.  On a funny note, when the Doctor at Princess Margaret came in, she said that his medical situation has taken over her Inbox with emails back and forth with his oncologist and urologist and every one else connected with him.  Too funny. My special man.
Thanks to everyone for your text messages and phones calls and emails of prayers and concerns.
We know we are truly blessed with family and friends.

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Relapsed High-Risk Myeloma – Update – May 23 2013

Woke in the night with a TERRIBLE, NO-GOOD left calf cramp – YELPING LOUDLY enough for Jani to hear me. I had my dorsiflexion boot on the wrong leg – although, I have 2 boots, so should have had both on. Continue to sleep better, but my left calf feels like it is at least 1 year shorter. I finished Day 3 of the Z-Pack antibiotic for my sinus infection today.

Don and Charlotte McKelvey dropped off two petunia plants for my front porch – so pretty and sweet of them to think of me!

Drove to town (4 blocks) and got the mail at the Post Office. Delivered it to Paco (my 92 year old father) and had a nice visit with him and his helper, Gretchen Lawrence, at the kitchen table. On the way home, visited with a friend, Ellis Reay, as he headed from the grocery to the Post Office.

Stopped at the Mine Hill Grill (photo below from Feb 1 2011) located on the corner of Main Street and Highway 93 in Mackay, Idaho.

and picked up a take home hamburger made by cook, Vesta Rogers.

Jani headed to the Idaho Falls Airport (100 miles each way) to pick up her partner, Robbyn who came from Colorado for a couple of days. Crossing the desert with the Twin Buttes in the distance – VERY WINDY with jet stream close to the ground.


Click on the photo of Robbyn’s plane twice and you can see it at the end of the red arrow.

Jani and Robbyn stopped at Paco’s house to say HELLO before they came to my house. I’m so lucky to have so many who want to visit me.

Then, Robbyn, Jani, and the dogs took a walk on the Mine Hill. It was a little chilly and windy up there. Mt. McCaleb and Lower Cedar Creek pictured below.

Robbyn with 12-year old Kady (white mouth), Zoe (behind her) and my Kemmer in front. I wasn’t there as I was one-with-my-sofa with my 35 platelets…darn it!

Our Mom sent Jani a penny on the BLM Road South above the Cattle Guard this afternoon.
This is a grazing year for cattle on the Mine Hill. Must be ample to eat, because they are producing LOTS of cow patties!

A rain squall over Lower Cedar Creek on the opposite of the valley from the Mine Hill.

 Mule deer in the Halverson and Palmer fields this evening, May 23 2013.

I wrote an email to Clay Smith, MD at the University of Colorado to let him know that I was still alive and explained my current treatment plan at St. Luke’s Hospital, Twin Falls, Idaho.

Posted in Cushing Facies, Dorsi Flexion Boot, Leg Cramps, Mackay Idaho, mutilple myeloma, Myeloma Blogs, Sinus, Steroids | Tagged | Leave a comment
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