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There's a few shows on cable that really interest me. One is called Property Virgins and the other one is called House Hunters. I find it very interesting to watch the reaction of the future home owners as they tour the potential houses. I think the favourite expression of many of the future home owners is: "This just doesn't work for me." usually in response to the flooring that they don't like or the kitchen countertops or the wallpaper...yada yada yada. Maybe I'm just being too sensitive but I wonder why young people want everything. When Mr. B and I first were married almost 37 years ago, we bought a very old house. I mean, it had MacTac on the side of the kitchen cupboard for crying out loud! And it had shag carpet! Does anyone out there remember what shag carpet was like? Pretty darn ugly! Yet we happily lived in that house for just over 5 years and the only thing we did to it was replace that horrible carpet and replace the furnace because it died. There just wasn't any extra money to put in new cabinets, or granite countertops. The thing that bothers me the most is that these people are so consumed by having everything they want on their perfect home list that they will overlook a diamond in the rough. Whatever happened to the term, "starter home"? It seems that everyone wants to start at the top.

This week, Mr. B's sister bought herself a new Toyota Rav 4 SUV. Now, that shouldn't bother me, right? I think what upset me was that she had a perfectly good car. It was a Toyota Camray with very low kilometers and was in very good shape mechanically. But from what I understood, she was at the dealership getting her car serviced and the draw of the new 2013 vehicle was too much to resist. Want vs Need?

We live in a society that caters to our wants. We are continually bombarded with advertisements that remind us that we deserve this or that. We are taught that it is ok to be selfish. Yet those of us that have loved ones with cancer want only one thing. We want a cure for cancer, plain and simple. This week has been a very diffcult one for me and Mr. B. Since I returned from Vancouver on February 20 I've noticed that Mr. B seems to be doing worse. He was not eating or drinking very much. Each week his blood tests showed that his kidney function was gettin worse and this just didn't make sense since his M Protein numbers were coming down. In the past few weeks we've had lots of doctor appointments. The first one was to a kidney doctor who said that Mr. B might need to go on dialysis if his kidney function continued to deteriorate. Mr. B indicated that he did not want to do that. The doctor said that in light of Mr. B having the cancer, dying from kidney failure would not be a bad way to die. She said that he would just gradually go to sleep and not wake up. It was hard to hear him say that but I know how much he hates going to the cancer center for treatments. It's been over a year of doing that and he's just getting tired of it.

The next appointment was to his pain doctor. I was really upset by this time because I was seeing Mr. B's condition continue to deteriorate. The doctor asked how things were going and I started to cry. I said that the doctors are each treating a part of Mr. B but no one was worried about Mr. B as a person. He was gradually fading away and I felt that no one was even caring. The pain doctor is such a compassionate man. He talked to us about the things that we have not faced yet. He asked Mr. B what life saving measures he would want at the end. He also asked Mr. B if he felt that the chemo treatments were working. He replied that he thought they were. Then the doctor asked me what I felt. I said I was very confused since his protein was coming down but the free light chains were skyrocketing. It just didn't make sense to me. The doctor said that there were programs that would assist us during the end stages of cancer but first the patient has to decide to not accept any more cancer treatments. Mr. B is not ready to do that yet. I totally respect that but then it makes things harder for me because I'm left to handle everything by myself. :-(

During these past few weeks, Mr. B's potassium levels have been very high. Usually we can get them down to a reasonable number with a dose of Kayexalate. But this week, after a large dose, his potassium actually climbed higher. On Friday I received a call from the kidney doctor saying that his potassium was going up and he wanted Mr. B to go straight to the hospital for dialysis. I relayed the message to Mr. B and he said that he did not want to go on dialysis. I then told the doctor that and you could tell that he was not impressed. He basically said that he couldn't force him to come and then hung up. The kidney nurse called and told me to give Mr. B a very large dose of Kayexalate for the next three days and to go for blood work on Monday. I then spoke with the pain doctor's nurse because I wanted her to be aware of what was going on with Mr. B's kidneys. She was very helpful in getting me calmed down and helping me to form a plan if something happened to Mr. B over the weekend. Thankfully I didn't need to call an ambulance but I do wonder how Mr. B is holding on. He looks so sick and should really be in the hospital but how do I force him to go right now? I know that he's much happier being in his own home and sleeping in his own bed. He would be miserable in the hospital.

Later the same afternoon, Mr. B's cancer nurse called. Seems that the pain nurse had left her a message informing her how sick Mr. B was getting so now she booked an appointment for us to see the cancer doctor on Wednesday. I just hope he is able to attend that appointment because right now I have my doubts. :-(

This past week also brought some very sad news. A young couple that we know have a 2 1/2 year old son with brain cancer. He's been fighting for 212 days, but on Thursday he passed away. I cried so hard when I received the email about his death. He was such a brave warrior and he brought so much encouragement to many people. Rest in Peace, Cash.

Donna Sutherland
3/18/2013 03:59:27 am

Oh Shelley, my heart hurts to hear your news. I wish so much that I could do something to help. You have carried a heavy, heavy load for a long, long time now. If there is anything I can do, please let me know.

I attended a funeral last week for a man (my best friend's dad) challenged by Parkinson's for 16 years. He wasted away a little bit each day over those years. His family said that was the hardest thing to watch, and I agree. He had been a farmer all of his life, a physically strong man...until he became so fragile...that is a reality that is difficult to accept.

My husband had a crash last week that put him in the hospital with a broken collarbone and a severely damaged hip (although not broken) that left him unable to walk or do much for himself. We thank the powers that be that he is still alive; It could have been so much worse. It has given him a new appreciation for life and has forced him to reconsider the chances he has taken with his life up to this crash. Too much speed, too little care.

I will keep you and Mr. B in in my thoughts and prayers. Hugs. --Donna

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Shelley
3/18/2013 02:52:02 pm

I do really appreciate your prayers, Donna. It has been a very hard road for both of us. We see his cancer doctor on Wednesday. I'm not sure what he will tell us but I'm afraid it will be that there is nothing more he can do for Daryl. :-(

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Peggy
3/18/2013 08:00:21 am

Shelley...I hope you can feel my arms of a big hug around you.

What you write is so true...wants and needs...how some people soar thru life with no problems...or so it appears to the outside world.

Mr. B. is so very, very lucky to have you as his caregiver during every step of his journey. You will always know and be comforted in that you did your very, very best for him. I'm so sorry this has to be such a painful time for your both.

The sun is shining here after the storm...I hope it is shining there...at least that helps the day be brighter.

Luv
Peg.

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Shelley
3/18/2013 02:55:54 pm

Peggy, I just appreciate that you take the time to stop by and read my blog. Sometimes it's the only connection I have with friends to let them know how I'm feeling. Writing individual emails can be so exhausting and I usually end up just stating the facts about how Daryl is doing and I don't write about myself.

I told a friend today that I can usually hold my emotions in until someone asks how I'm coping. Then I fall apart and cry like a baby. I guess it's just easier for me to hold all of those emotions in. I don't think I would be able to function at all if I didn't.

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BARB BURANT
3/18/2013 11:08:14 pm

Shelley, my prayers are with you and your husband. That doesn't seem enough, but it's all any of us can do. I know you'll treasure each and every day you have with him as I do with my husband. It's amazing how true the old saying is about how your priorities change when you or your spouse is diagnosed with cancer, but it's so true. All out "wants" from before have changed to just one thing - we "want" to find a cure for this horrible disease. Stay as strong as you can and remember all the prayers and good thoughts we are all sending you.

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Shelley
3/20/2013 04:50:37 pm

Prayers gratefully accepted, Barb. Thank you so much.

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3/19/2013 03:50:48 am

Golly, Shelley, I know this is a huge burden for you and yet you don't want to call it that because it is your Beloved for whom you are carrying it. I am holding you in the Healing Light, sending you bunches of hugs and loving energy for the days ahead, whether seeing the doctor(s) or just managing each day as it comes...

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Shelley
3/20/2013 04:51:25 pm

Hugs also gratefully accepted, Sandy. Hugs to you too.

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3/19/2013 04:28:55 am

Shelley,
Feeling helpless and wishing there were words to comfort your heart. Caregiving can be so very hard as you watch your loved one suffer and try to respect their wishes. Praying for your strength and wisdom as you face the coming doctor's appointment, and of course for Mr. B's peace as he also makes decisions about his care.
Want vs need...your observations are so spot on. No one seems to begin in "starter homes" anymore, though I must say both of my married daughters did! There isn't the appreciation for things you worked hard for when everything is put in your lap. Cancer certainly changes one's perspective and teaches us valuable lessons. Stay strong...

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Shelley
3/20/2013 04:55:42 pm

Linda, I hope that in the future I don't forget to ask myself if I really need something or if I just want it. During the past year we have managed to live on one salary. I never thought we could do it but since we don't go out much there is less opportunities to spend money. And it's given me a whole different prospective on making purchases. I'm learning that I can do with much less than I ever imagined I could.

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3/20/2013 03:18:01 pm

dear shelley,

there are no words to express how badly i feel for you, and for mr.B. i hope the appt. of wednesday has given you both some hope and some answers. please do keep us posted - it seems as though you both are approaching a crossroad in making decisions for the future. i know that for both you and daryl, this may be very profound and very scary. but i am so gald you have that wonderful pain management doctor, able to guide you through with a good base of knowlege and also compassion. thank goodness, that through all your sadness and fear and confussion you were able to express that it seems as though darly is not being treated as a whole person. that aspect must be particularly painful.

and please let me offer you my deepest sympathy for the loss of your friend's baby cash. it is so heartbreaking, just looking at his sweet face in that photo you posted.

keep writing and reaching out and know that while you are helping others, you are not alone.

love, xoxo

karen, TC

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Shelley
3/20/2013 04:59:00 pm

Karen, since writing this post, I've found out that Dr. G (the pain doctor) is actually part of the palliative care program. I suspected he was but had never asked the question. When the palliative care nurse came to visit on Tuesday afternoon, I asked her if he was part of the program and she comfirmed it was true. I was very happy to know that we have such an amazing compassionate man to walk beside us.

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10/12/2013 02:15:23 am

In three words I can sum up everything I've learned about life: It goes on.

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2/25/2015 11:58:42 pm

It's similar with " important but not urgent"

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7/22/2016 10:16:34 pm

Very efficiently written information. It will be valuable to everyone who uses it, including myself. Thanks a lot!

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