Since Mr. B was diagnosed with MM just over a year ago, I have felt like I've been holding my breath. And at times, I have felt like I'm drowning. I have paddled upstream for much of the journey. I have navigated uncharted waters. I have learned to make my voice heard and I have learned to be the voice for Mr. B. But mostly, I've felt so totally alone that the weight was almost unbearable at times. Only those that have walked this path can understand what I mean. It is a walk that I would never have chosen for myself or for Mr. B. Nor would I wish it on anyone else.
Yesterday we had our first visit from the palliative care nurse. She spent two hours with us. During that time, she took a complete history of what Mr. B had been through. She wrote down all of his medications, all of his doctors' names and the phone numbers of his nurses. She also recorded any appointments or tests that were scheduled. She said that she would be the liason from now on with all of his doctors. I felt like a huge weight had been lifted from my shoulders and I could finally take a big breath. All that I have asked for continually during this nightmare is that there would be some communication between all of the doctors. They all seemed to be worried about their area: cancer, kidneys, pain but no one seemed to look at Mr. B as a whole person and how he was progressing. Now at least I felt like I had someone in my corner. Even though Mr. B is not officially on the palliative care program, they did say it was ok for him to see the palliative care nurse. I was very thankful for that. I believe that this is just the first step before Mr. B enters that program and I think his pain doctor recognized that this was the way things were going when we saw him on March 14.
Today we had an appointment with Mr. B's cancer doctor. Since Mr. B has refused dialysis for his kidneys, the doctor cannot recommend continuing with the chemo treatments. He said that it would be counterproductive because the kidneys would continue to fail. Right now the treatment he is on (Revlimid & Dex) is not working to bring down his Lamda Free Light Chains and this is causing his kidneys to fail. If he does take the dialysis, the cancer doctor could try only one more option and that is a stronger dose of a drug that Mr. B had been on previously but had made him very sick (Cyclophosphamide). I fear that it would kill him anyway. So the doctor left Mr. B to make a decision about what he wants to do. At this point he is standing firm that he does not want dialysis. I said I would support him in whatever decision he made. We both cried in the office and when we got home. I know that Mr. B will have to make the decision soon and at that time he would be eligible for the palliative care program if he declines all treatment. I cannot begin to understand what he is experiencing right now. It is not an easy decision to make but the truth is that his body is growing weaker each day and it could be possible that the decision will be taken out of his hands. :-(
And yet, through all of this hell there are moments that bless me beyond words. A few days ago a dear friend sent me a text. She said to me, "Hey we are going out for an after supper treat to Dairy Queen. Can we bring anything back for you guys?" I was sure Mr. B would refuse since he wasn't feeling that great but he surprised me and asked for a strawberry sundae. I passed on the message to my friend. As soon as I hit "send", Mr. B asked what I was getting and I answered that I was getting a blizzard. So he said that he would like one of them instead. His mind is a bit indecisive right now. LOL I quickly texted my friend back to make the correction. A little while later she arrived with our treats. It was so neat to see him enjoy his mini blizzard...just the right size for him. And it also brought me to tears that such a small gesture could bless me so much. I wondered if this would be the last time that Mr. B would experience a blizzard ice cream treat. Thank you, Nicky. I will never forget that small act of kindness.
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.