On December 30, 2011 Mr. B and I walked through the doors of the cancer treatment center for the first time. Little did we know that in a month we would hear the news that he had cancer. Truthfully....I was sure he would not survive the year. I've never seen anyone this sick before and he just seemed to get sicker after each treatment. Then his doctor gave him a vacation from the treatments and I started to see Mr. B recover. He was actually starting to enjoy life again. During the time up until this vacation we had hardly ever been out of the condo other than to treatments and doctor appointments. So we were elated when he felt well enough to attend the NBA basketball game in October. I wish I had taken more pictures. I took a quick one with my iPhone but I missed a golden opportunity to take a picture of Mr. B and the Minnesota Timberwolves mascot. He passed right behind us. A few weeks later Mr. B and I attended an awards night hosted by his employer. Mr. B was presented with a long service award. When he accepted the award, he announced that he was officially retiring in a few weeks. During his speech he was overwhelmed by tears several times. My heart just broke for him. I know that this was not the way that he wanted to retire. HIs plan was to work a few more years and then retire. Life had other plans though. :-(
And so we press on. We reach for the carrot that is dangling in front of us. We pray for a cure to this horrible cancer. Mr. B has started taking Revlimid. I have to admit, we had great hopes that it would work for him and it has...to a point. His protein numbers are starting to come down, but he seems to be getting worse physically. His hemoglobin is dropping. His platets are dropping and his kidney function is getting worse. It just doesn't make sense. I don't think I will ever understand this cancer.
But on a positive note, Mr. B did something that totally surprised me a few weeks ago. While we were shopping at Costco, he found something that he wanted to purchase....a guitar. Now if you know Mr. B, you would know that he has never shown an interest in learning to play a musical instrument. But I practically leaped over the aisle to get that guitar. If he wanted to strum that guitar even if he didn't play a note that was fine with me. He rarely shows any interest in hobbies so I was really excited that he wanted to learn to play the guitar. So far he hasn't done much playing or maybe he just does it when I'm not around. Right now he's really not been feeling well so he has been sleeping a lot. So the guitar waits for Mr. B to try his hand at making music. We all do. :-)
Merry Christmas everyone!!
For the past year our family has been living on a greatly reduced income. I actually had quit my full time job almost a year ago to pursue my own bookkeeping business at home. Then a month later, we found out that Mr. B had multiple myeloma and we were on the roller coaster ride of our lives. A few months ago when Mr. B was going through a particularly bad time healthwise, I made the decision to do whatever I could to work at home. I felt like a weight had been lifted from my shoulders once I made that decision....until today.
About a month ago, we decided to make an early application to have our mortgage changed over to our new financial institution. Our current mortgage is held by a company that is closing down and will only honour our mortgage until it comes up for renewal which is in November 2013. So we thought it would be good to know if we would even qualify for our mortgage to be renewed now rather than in a year from now when Mr. B's health might be even worse.
Well, surprise, surprise....we did not qualify and now we will need to make some hard decisions in the next year. We basically only have two options, sell our condo and move into an apartment or I will need to find a full time job out of our home. It sends shivers up my spine to think about the pressures of working full time and trying to care for Mr. B at the same time. I've found the last year pretty hard emotionally and I know that trying to hold down a full time job would not be very good for me. I would be a basket case. :-(
I'm sure that many of you are working while caring for your spouses. I've admired those of you that can do it. I think I would rather sell our home and live in an apartment then go back to work. Yet I know how hard that would be for Mr. B so I have to weigh the options and decide what would be best for both of us.
It was a wake up call that I should have expected but still shocked me when I got the phone call today. I know that I have almost a year before the decision needs to be made but I don't want to be leaving it to the last minute. And as I'm learning, I will need to be the one that makes the decision. Mr. B gets very depressed when these types of decisions need to be made. He blames himself and nothing I say can change his mind. It's just easier if I do as much leg work myself first and then present the solution to him.
Is silence really golden? I think in some cases it is. To allow ourselves to find a quiet place and still our hearts can be a very healing experience. I've always embraced silence and most times prefer it to a very noisy environment.
That was until Mr. B became ill with multiple myeloma. Our home has become very silent. Mr. B moves so quietly from room to room that he often startles me because I don't hear him come in. When he would watch TV I always knew how his basketball team was doing by his verbal responses to the game. Our home had life. We spoke to each other a lot and laughed. But now Mr. B hardly speaks unless I speak first. I try to pull him into conversations and sometimes I'm successful, but most times I'm not. I've heard from other caregivers that they have experienced the same thing with their MM patients. Perhaps it's just part of what this cancer does to a person. It brings such horrible fatigue that sometimes it's just too much effort for the patient to respond.
Or maybe the silence comes from depression. I know that Mr. B is really struggling emotionally. He has not been feeling well and even though he has been off all chemo for 5 weeks, he still is struggling with nausea & vomiting. We were sure that it would improve if the chemo treatments were stopped for a few weeks. Now I worry that there could be something else wrong that is causing the nausea. I'm afraid that Mr. B will stop eating if it doesn't improve soon. The last few nights he has gone to bed crying. I feel so totally helpless because I don't know what to do to make it better. The doctor has tried every anti-nausea drug on the market and nothing seems to work. Next Tuesday we have an appointment with Mr. B's doctor. We will learn what the plan is for his treatment. The doctor had talked about starting Mr. B on Revlimid instead of going back to the Velcad/Dex/Cyclophosphamide treatments. Now I'm worried that the Revlimid might be even harder on his system and there are no other options available for him here in Canada.
So silence is not golden anymore in my life. I yearn for the joy and laughter to return to our home. I pray for Mr. B to have good days ahead. Days that he can enjoy some of the simple things in life. Days where he will be free from pain and nausea and vomiting. Days that don't include medications and doctor appointments and chemo treatments. I'm not asking for much, just one day where he feels good enough to smile and laugh again.
Dealing with a person that has a critical illness is like walking on a fine line. Sometimes it's very hard to know when to step in and take charge or let the patient make the call. I've experienced at least three occasions where I trumped my husband's decision about going to the hospital. I wanted him to go, he didn't want to go. I won.
But the past week Mr B has not been doing very well physically or emotionally. We were really hoping for an improvement in his condition because the doctor stopped his chemo treatments for 3 weeks to give his body a rest. We were very hopeful that the rest would improve his nausea/vomiting/dry heaves. Unfortunately it has just gotten worse instead of getting better. I've also seen a deterioration of his general health this past week. He spends a lot of time in bed and isn't eating or drinking very much. I've also insisted that he start using his walker in the condo because he seems so unsteady on his feet. I'm afraid that I will need to pull rank again and take him to the hospital. We've talked about it several times over the past few days and he keeps saying he wants to wait a few more days to see if he improves. I'm not sure we have the luxury of waiting very much longer.
I'm scared. The other night Mr. B told me that he was scared. We both are scared. Tonight we held each other and cried. We do that a lot these days. How can someone go downhill so quickly? It doesn't seem fair.
I've decided to create a forum for caregivers. I'm testing it out to see how it will go over and if caregivers will use it. I often have contact with other caregivers by email and have found great comfort from sharing our experiences together. I know that so much of what we share would be valuable for other caregivers to have access to.
Check it out and see what you think. You will have to register before you can post though. To visit the forum just click on the link at the top, "Caregivers Forum".
I hope you like it. :-)
I think I've mentioned before that I'm not a writer. English in school was my worst subject. I struggled through any creative writing assignment that I had to do. I would even go as far as to say it was painful for me to do any writing. I lump writing emails or making a post for this blog in the same category. Many times I try to start a new article but my mind is all tangled up like a ball of yarn. Many thoughts are jumbled up inside and I just don't know how to get them down on paper.
When I first started knitting, my mother taught me to look for the start of the ball in the center. You stick your finger in one of the ends of the ball and pull out a section of yarn. The end would come out with that jumble of yarn and you were on your way to knitting your project. The remaining yarn would seamlessly flow out of that hole until you came to the other end. When I started knitting again a few months ago, I tried this same technique. What I ended up with was a horrible mess of tangled yarn. It was painstaking work to untangle it so I learned my lesson. Each ball after that, I took my time to unwind it and rewind it back into a ball. It was time well spent.
So how does one untangle the mess of thoughts and emotions that are running around in your head? I guess it would be the same way you would untangle a ball of yarn.....one step at a time, one thread at a time, until you see some progress. Don't try to untangle it all at once, but pick one knot and work on it. Then move to the next one and so on and so on. It won't be long and you will have a nice neat ball of yarn.
The past few weeks have been emotional ones in our household. We had an appointment with Dr. A and he stressed again that Mr. B had an aggressive form of Multiple Myeloma cancer. He would continue to treat Mr. B for about 4 more months in the hope that his protein numbers would be reduced enough to be considered for a stem cell transplant. If they did not come down and hold steady, then his only other treatment option would be a drug called Revlimid. Mr. B left that appointment feeling very depressed. He said that he felt he had been given a death sentence. The rest of the week he cried often. During this time I was considering some contract work outside of the home. It would be for 2 days a week and would last for about 4 months. The important thing was that it would ease some of the financial pressure that we are under right now. But after seeing the turmoil that Mr. B was going through, I had to search my heart and determine if it was in the best interest of both myself and Mr. B if I worked outside the home. I tried doing it last April & May when I worked 2 or 3 days a week. I had forgotten that I was very stressed during that period of time and was only too happy to have it end. Mr. B & I had a real heart to heart talk. We cried lots and we even ventured into the area that we have ignored since he was diagnosed. Yes, we had "the talk". We addressed the elephant in the room finally and talked about getting some wills prepared and getting our financial affairs in order. It was very hard to talk about and we didn't talk about everything but it set the wheels in motion. So with great trepidation I called the client the next day to say it was just not good timing for me to work in their office right now. To my surprise, he said that he felt I could do the work remotely from home! What an answer to prayer! Now I will be earning some extra money that will help cover our bills plus I can stay at home to monitor Mr. B.
Don't get me wrong....it's not that Mr. B is a total invalid who can't be left alone. But I've noticed in the past that when I'm away lots, he tends to get more depressed. He has never been the kind of person that has lots of friends or hobbies to keep him busy. His life has been work, me and tv. Not sure which order they go in. *g* There have been weeks and even months where he would not get a visit or a phone call from anyone. So I feel it is very important that I'm around him as much as possible to keep him connected to the real world. Each week I see the chemo treatments take a little more out of him physically. He is still struggling with nausea and the dry heaves or vomiting from the treatments and out of 7 days a week, he will only feel good for maybe 2 of them. It breaks my heart to see him suffer so much each week. And when Mr. B has a good day, my hopes start rising again that maybe the treatments are starting to work. But a few days later, he will crash again and I'm reminded that his journey is far from over. It truly is a roller coaster ride.
But the one good thing that has come out of this nightmare is that for the first time in our 37 years of marriage, we are starting to communicate from our hearts. The baby steps that we took this week have been awesome. I know that there will be many more in the coming months. Please....hug your spouse and tell them that you love them, at least once a day. You will never regret it.
I came across this quote when I was looking for a photo to accompany this post. At first I passed it by because I wasn't sure if I liked what it said or if I even agreed with it. I will explain why.
Up until Aug of 2011, I had never even heard of a cancer called Multiple Myeloma. During that time, I heard that one of my co-workers had a husband that was fighting cancer so I asked her how he was doing and what kind of cancer he had. She told me that he had MM and tried to explain it to me. Since I like to be informed, I immediately ran to my favourite search engine and googled it. I came away with much more insight into this cancer. In November of 2011, her husband had a stem cell transplant and was doing very well. I quit my job in December, 2011 and within a month found out that Mr. B was diagnosed with MM also. So I guess I have to admit that this quote is true. I don't think it was a mistake that I was working at this company and met a caregiver for someone who was battling this cancer. Because of her, I already had a basic knowledge of this cancer when Mr. B was diagnosed. So I have to admit that it was a blessing that I was able to learn from and not just a coincidence.
On Thursday of this past week, I received an email from a different woman in the same office. She had left our office about a year before I did but I had kept in contact with her. As a matter of fact, her new employment was at the same hospital where Mr. B spent 3 visits. I even ran into her in the hallway during his last hospitalization. She told me in the email that her husband was recently diagnosed with....wait for this.... Multiple Myeloma. So what are the chances of three people in the same office having husbands with the same cancer?
I had been told that Multiple Myeloma was a rare cancer so I did some research at the Canadian Cancer Society to find out some statistics. There are an estimated 186,400 new cases of cancer that will be diagnosed in 2012. Of those new cases, only 2,300 will be Multiple Myeloma cancer. So I guess it is not as common as lung, prostate, breast or colorector cancers which account for over 50% of all new cancers diagnosed. But it does seem to be an amazing coincidence that three people in the same office would have been affected by MM. I had also heard that Multiple Myeloma is the fastest growing cancer in the world with the most new cases diagnosed. I was only able to find two references to that statement and both were from about 10 years ago. I would be very curious to know how that statement stands today.
So I think that this quote was bang on for me. Knowing people that are struggling with this same cancer can turn into a blessing. Only those of us that are walking the same journey can truly understand what it is like. And I pray that I can be a blessing to any caregivers who have a loved one that was recently diagnosed with this horrible cancer.
"I long to accomplish a great and noble task, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along not only by the mighty shoves of its heroes but also by the aggregate of the tiny pushes of each honest worker."
- Helen Keller
I used to do a lot of knitting many years ago but for some reason I stopped. I think it happened around the time that the internet found it's way into our house. I started spending (or should I say wasting *g*) my time on the internet inside of pursuing more productive things. But recently I felt a need to start knitting again. I think I was motivated from some talk on the Multiple Myeloma Facebook group that I belong to. One of the members who recently passed away used to knit a little stuffed toy that she called a Myeloma Buddy as a fundraiser for Myeloma Research. So I started looking at patterns on the internet and came across a really cute stuffed bear that I decided to knit. I realized that it was not going to be a good fundraiser idea since the specialty yarn that the pattern required was just too expensive so I filed the pattern for future reference. Little did I know that the time to knit it would come sooner than I expected. A few weeks after I bought the pattern, a friend of mine lost her 21 year old daughter in a car accident. They were very close and my heart hurt so much for her. My friend is an avid knitter and so I decided to sharpen my knitting needles and knit this stuffed bear for her. The pattern is called, "Need-a-Hug Bear" and I thought that when she was really sad and missing her daughter, she could hug this bear. Plus I knew that my friend would really appreciate the love and time that I put into knitting it. Every stitch I knit I thought of her and prayed for her. And I'm sure if she looked close enough she would see that I'm not a perfect knitter but that my heart was in the right place while I was knitting it. I know that it won't bring her daughter back but I hope that it will give her some comfort on her dark days.
Knitting also gave me a gift. I realized that it was a perfect thing to do while Mr. B is having his treatments. It amazed me how quickly 4 hours could pass while I was knitting. Sometimes I would do (easy) crossword puzzles, or read a magazine or book. But knitting puts me into almost a zen state. My mind quietens, my body relaxes and I focus on what my goal is. I'm not sure how long I will continue to knit at the treatments but I have already promised a few bears to family members so I'm committed to a few more hours of knitting. And I will see where it takes me after that. Here's a picture of the finished project. Oh, and there aren't little black specks in the yarn. What you are seeing are little sequins in the yarn that reflect the light.
I've always considered myself to be a very patient person. Over my many years of being in the working world, I've often been complimented by other staff members that I am a very good teacher because I as so patient. I love to share the knowledge that I have with others.
But when it comes to Mr. B getting better, I find that my patience is lacking. I want him to hurry up and get better. I want the doctor to try other drugs. Why is it taking so long? Why are we not seeing any positive results from his treatments? And then I remember. This is not in our hands. We have no control over how or when Mr. B will get better. And so we wait. We wait for the day when Mr. B will turn the corner and be on the road to recovery. We place our hope in our God and remember that He alone will guide us and give us patience.
About 4 years ago, my daughter gave me a hummingbird feeder. I had often talked about how I wanted to put a feeder outside in the hopes that some hummingbirds would start visiting it. Then we moved to a condo on the second floor and I thought I had to give up my dream of seeing my own hummingbirds. After all, hummingbirds don't fly to second floor balconies, do they? My friend in Vancouver told me to go ahead and hang the feeder. She lives on the eight floor of an apartment building and she gets lots of hummingbirds! Ok, she had me convinced so last summer I hung out my feeder and even purchased a second one. But I discovered at the bird store that you need to have the feeders out as early as possible because if you miss their migration north, then they will find another location. So I did see the odd hummingbird but nothing very regular. I was so disappointed.
But this summer, I had my feeders out by mid May. It took a few weeks, but then I saw my first bird. I was so excited! Now to try and get a picture! I sat for hours on my balcony, waiting for one of them to come to the feeder. And EVERY single time I lifted my camera to take a picture, they were gone like a bullet. So I tried taking a picture from inside. That didn't work very well either. Next I tried using a tripod for my camera and I sort of sat behind it with my finger ready on the shutter release button. I did get some pictures. Here is one of the better pictures.
But I still wasn't satisfied. What was missing? Then I realized what it was. I think the thing I like the most about hummingbirds is watching their movement. They are so amazing to watch! They zip back and forth so quickly that you would miss them if you blinked! So I got smart and took a video instead. I hope you enjoy it. :-)
This is the second video that I took. The hummingbird wouldn't come to feed while I was outside so I set the camera on a tripod and started the video while I went inside. It came almost right away when I left but kept a close eye on the camera. LOL
I've never lived alone. I was married at 18 and went from living with my parents to living with Mr. B. That was almost 37 years ago.
Since Mr. B became so ill with MM, I've struggled whenever I thought about losing him. I don't know how to see myself as a single person. It scares me. And it's not that I'm afraid of being alone in my home. Mr. B's job required him to work nights every two weeks so I was used to sleeping alone. But that didn't bother me because I knew he would be finished with that in two weeks.
I'm afraid of having to redefine myself as a single person. Having to go to social events alone. Or going shopping alone. Or even going out to eat alone. I'm afraid that I will start to withdraw because it will just be less uncomfortable to just stay home instead of facing my fears and going out.
Today on Facebook one or my friends shared this video. It's called, "How To Be Alone". It really spoke to my heart and encouraged me to face my fears. Please take the time to watch it. You won't be sorry.