I have a new title. A title that I did not ask to have.
I am a widow.
When I fill out forms I can no longer check the box that says "married".
For 37 1/2 years I have been married. I have known more of my life as married than not married. I was 18 years old when Mr. B and I were married on October 10, 1975. When I said the words, "in sickness and in health" during the ceremony I never imagined that my husband would die from cancer on April 5, 2013. I'm still finding it very hard to believe that he is gone. And even though it's been 19 weeks since he passed away, I'm still finding some days very hard to get through.
I sure wasn't expecting to grieve this hard. I guess I thought I had prepared myself for the possibility that Mr. B would die. From almost the beginning of his journey with cancer, he was very sick. I saw how sick he looked but I still held out hope that he would improve. After all, many others with this cancer have been pulled back from the brink of death so surely Mr. B would improve as they did. Unfortunately, Mr. B had a very aggressive form of Multiple Myeloma. It fought back with every treatment that he was given. By February 2013, his body was so weak that his kidneys started to fail. Mr. B was so worn down both physically and emotionally that he made the choice not to accept the kidney dialysis. Because he made the choice not to have dialysis, his hematologist said that they could no longer give him chemo as it was not working to lower his Lamda Free Light Chains and was causing the kidney failure. For Mr. B, the thought of sitting in the hospital for 3 days a week hooked up to a machine for 4 hours was just too much to bear. And although I do understand why he made that choice, it still broke my heart.
I've decided to separate the two blogs because I wanted to keep my main page on the MyelomaBlog.org website. My hope is that when I'm feeling in a better place emotionally I will start doing my part to educate the public about his cancer. And I don't want to write posts on there about how hard this journey is for me now that I'm a widow. The people with this cancer do not want to hear about how hard it is for those left behind and I totally agree with them. My goal is to encourage them and do what I can to raise more funds for research.
I hope that you will continue to visit my blog and walk this journey with me. It is much easier if I know there are others walking beside me.
God bless you.
Last fall I had a dream. Or maybe I should say that I had a nightmare. It really upset me. In the dream I was filling out a form. When I came to the section for "marital status" I checked the box for "widow". When I woke up I was extremely upset and I think it was because that word had never entered my mind up to that point. I don't think that I wanted to believe that Mr. B would pass away. Even though he had been very sick since his diagnosis on January 31, 2012 I was still very hopeful that the treatments would work for him as they have worked for many others with this cancer.
I don't like this new title. I don't like being alone. Each day I hate going to bed and I hate getting up. These are the worst times for me because I'm so aware of being alone. During the day I can usually keep my mind on other things but in the quiet of the night and early morning the silence is magnified. On June 5, it will be 2 months since Mr. B passed away. It feels like a lot more time has passed since he died. My heart still doesn't want to accept that he is gone and there are times when I still break down sobbing. I've heard grief described as the ebb and flow of the ocean. Sometimes it is gentle and other times the waves come crashing down. You never know when those times will come. Thankfully they have come for me when I've been at home and don't embarrass myself by sobbing uncontrollably in public. Or maybe I've just pushed it down when it threatens it's ugly head in public. Then when I'm in the privacy of my home I can let the tears fall.
I've recently been looking for "Godwinks". If you have never heard about Godwinks I encourage you to read one of the books written by SQuire Rushnell. Here is a description from his website:
WHAT'S A GODWINK?
A godwink is what some people would call a coincidence, an answered prayer, or simply an experience where you'd say, "Wow, what are the odds of that!"
What do godwinks mean? Think about when you were a kid and someone you loved gave you a little wink across the dining room table...Mom or Dad or Grandma. You didn't say "What do you mean by that?" You knew. It meant: "Hey kid, I'm thinking about you right now." That's what a godwink is too: a message of reassurance from above, directly to you, out of six billion people on the planet, saying "Hey kid...I'm thinking of you! Keep the faith! You're never alone."
When a loved one passes away and you are finding the grieving process difficult you sometimes look for little signs that they are ok or that they are watching over you. It might be a very small thing like on Thursday I saw the first hummingbird at my feeder. I was overjoyed to see it and then immediately started to cry because I remembered how Mr. B and I would watch them together. But they were happy tears because it felt like he was part of the hummingbird and was saying that everything was going to be ok. I believe that this was a Godwink. :-)
And last Wednesday a dear friend took me to see an eagle's nest. We had been there the day after Mr. B's funeral service and knew that the female eagle was sitting in the nest. We were pretty sure that she had some eggs. On Wednesday we saw that there were two babies. My heart was filled with joy as I knew Mr. B would have been so excited to see them. I took a few pictures and most turned out pretty blurry since we were quite a distance from the nest. These pictures are cropped to better show the babies.
There truly is nothing more beautiful than seeing an animal in it's natural habitant. The mama eagle did not seem concerned about us being there in the least. She knew we were far from the nest and were no danger to her babies. But the location will be my secret so that she can continue to raise her babies in a stress free environment.
Fly free like the eagles, Mr. B!
So I am a widow. I have a new title. Today I called Revenue Canada to inform them of Mr. B's death. I explained why I was calling and the woman on the other end of the phone proceeded to ask me some questions to make sure that I was who I said I was. It was the typical stuff like name, address, birthdate.....marital status.....yep...she asked me what my marital status was. And what was even funnier was when she realized that she had asked me that question and answered it herself. She was very apologetic. I had to admit, it did break up a very somber moment. *g*
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. :-)
It seems like months, not days since Mr. B passed away. On Friday it will be two weeks. I was hoping that as each day passed it would get a little easier but it doesn't. If anything it has gotten harder. Last week I was mostly in shock and as that shock wore off it was replaced with anxiety about the funeral service on Saturday. I was absolutely dreading it! I knew it would be emotional and it was. I cried so much. At the end of the service, the funeral director asked everyone to file by the front pew were all of the family were seated to offer their condolences. I hugged many of them and cried each time. There were approximately 150 people that attended the service. So many of them were co-workers of Mr. B from his current workplace and from his previous workplace. Although I did not know their faces, I did recognize their names as Mr. B spoke of them often to me. It touched me so much to see how respected and loved he was by others. Mr. B was cremated so I have his ashes at home now. My plan was to have the urn buried in a cemetery plot this summer. But I'm having a hard time thinking about that right now. Yes, it's true. I've become one of THEM. You know who I mean. Those crazy widowed ladies that keep their husbands on the mantle forever. I'm finding such comfort in having his remains close by. The urn that I chose is so beautiful and represents Mr. B so much. I will try to post a photo of it. Hopefully I don't gross anyone out. :-)
I feel such an emptiness inside of me since Mr. B passed away. It's like part of me is missing. I can't seem to focus on anything, not even watching TV. I find that having the TV on is just noise to me so most of the time I have it turned off. I'm better if I'm away from home running errands but when I'm back at home and looking at all of his things, I start crying pretty quickly. I'm taking it very slow in regards to disposing of Mr. B's things. I know that his clothes will be the last to go. For now they bring me comfort. I see them each day when I get dressed in the morning. I know I won't be able to handle the big empty space in the closet once they are gone so I want to make sure I'm ready before I take them out. Every thing of Mr. B's that I take from our home has left me feeling more empty. The first things I wanted to have taken out were the things that reminded me of him being sick like the hospital bed and his wheelchair. I still have to tackle his bathroom. There's a few things there that were to help him like the special toilet seat, the tub bar and the shower chair. I will deal with them, but so far I've not wanted to spend much time in that bathroom. Too many bad memories for me there.
Its funny how some of the smallest things will make me cry. In our home we often purchased jujubes candies as a treat. Mr. B and I both really liked them. Mr. B really liked the green ones which made me really happy since they were my least favourite. So as I passed the candy dish the other day I thought to myself, "Who is going to eat the green ones now?". Silly, I know but it did make me cry. I feel like I've lost my protector. :-(
Here are the three songs that were played at Mr. B's funeral service.
This song was played at our wedding on October 10, 1075, Time In A Bottle by Jim Croce.
This song was suggested by a close friend. At first I resisted using it because I knew it would be very emotional for me to hear it. I cried the very first time I heard this song even before Mr. B passed away. But I knew that it was perfect for the service so I went with my heart and used it. I know it touched many people at the service and even though I had to restrain myself from sobbing uncontrollably, I feel really good that I persisted and played it.
The last song was Mr. B's favourite. I never really liked it but since this service was about him, I knew there was no other song that I could pick. Plus it was a really good way to end the service on a happy note. Rest in peace, Mr. B.
I think I've heard this prayer millions of times, but until I looked for a picture to add to my blog I never realized that there was more to it. I've only ever seen the first part of it. What a powerful prayer and one that sums up the last 15 months of my life.
The past 24 hours have been very difficult. Yesterday, April 5 at 1:40 pm I said goodbye to my best friend. We have been married for 37 years and I am so lost now that he is gone. I've watched him suffer with so much pain and hardly ever complain. I think I'm still so numb that this day has finally arrived. I so wanted Mr. B to experience a total healing and although he did not receive it here on earth, he has now received it in Heaven.
Rest in peace, Mr. B. My heart is breaking now that you are gone.
The past week has been a blur to me.
Mr. B was not feeling very well last Sunday and Monday. When the palliative care nurse came for her Tuesday visit I told her that I was concerned about his condition. She evaluated him and decided that it was a good idea to start daily visits. He was also officially registered into the palliative care program and all chemo treatments were stopped. It was a hard decision to make but since Mr. B had refused dialysis, the decision to continue with the chemo treatments was made for him by his oncologist. He said that it was important to take dialysis to keep the kidneys functioning while the treatments were on going. But since the current treatment with Revlimid was not working to keep his Lamda Free Light Chains down, his kidneys were starting to fail. The only other treatment option available was to give a much higher dose of cyclophosphamide, the drug that made Mr. B so sick last summer. Unfortunately, Dr. A could not start that treatment unless Mr. B started dialysis. Truthfully, I'm not sure that Mr. B was strong enough to have that treatment or dialysis either.
That same day, Tuesday, the palliative care doctor visited Mr. B for the first time. He evaluated all of his medications and determined which ones could be stopped and which ones needed to be adjusted. I was given the after hours number to call for a nurse if I required one. Tuesday night had been difficult for me. Mr. B needed some cleaning up after a toilet mishap and I had a very hard time getting him in the bathtub. He was just too weak to lift his leg over the side of the tub. It scared me so the next morning I let the palliative care nurse know. She quickly ordered a commode for Mr. B to use at home. Later in the afternoon, Mr. B started to become much weaker. He could no longer get up to walk so I had to use either the wheelchair or the commode to move him around our condo. It was extremely hard to support his weight when he would get up from his bed to use the commode. I decided it was time to call the after hours palliative care nurse. I thought she would come to see him but instead she passed the call over to the night nurse as this nurse was on her way to another patient's residence and then her shift was over. It took another hour before the night nurse called me. She asked me if everything was ok and if Mr. B was now resting. I said I would check on him and found that he had somehow managed to get to the bathroom but had not been able to get there in time and had an accident on the floor and on his clothes. I said to the nurse that I didn't know how he managed to get to the bathroom on his own and all she said was that she would let me go since I had to tend to Mr. B. I think I was so shocked that she didn't even offer to come to evaluate him and I was so scared. I barely sleep at all that night and the 3 hours of sleep that I did get was with one eye open.
The next day when the palliative care nurse came, I told her everything and said that I just couldn't handle Mr. B when he was this weak. She decided that he should go to the hospital and said it would likely take a day or two to get him a bed. She left and within an hour called me back to say that they had found him a bed. I was so relieved. The interesting thing was once he was in the palliative care unit the staff quickly determined that he required two people to take him to the bathroom. Here I was trying to do it all by myself. No wonder I was so upset!
Mr. B is still there but resting comfortably. They were able to get his pain under control and he graduated to having just one staff member help him to the bathroom on Sunday. He still is too weak to walk by himself so stays in bed other than for his washroom breaks. Today he was having some breathing problems which scared me. The doctor told him that he just needs to call for a nurse and she will bring a medication to help him breath.
The staff in the palliative care unit are amazing! Mr. B never waits more than a few minutes when he presses his call button. They stop in his room to check on him and find out if he needs anything. Sometimes they bring a treat for him like ice cream. Mr. B isn't eating or drinking very much right now so they want to do whatever they can to make him happy.
And how am I doing? I cry lots. The first night was the worst when I came home. Walking down the hallway of our condo building, I realized that Mr. B would never walk that hallway again. Once I was in our condo, I saw all of his things and I knew he would never see them again. I think I started grieving his death even though he had not died yet. I finally called a friend because I just couldn't stop crying. :-(
I find that I'm often reduced to tears. When I'm with Mr. B at the hospital I'm ok because he is still with me. But once I go home and I'm faced with the silence of being alone, I quickly find the tears start. I'm not ready to lose him. We've had such a short time since his diagnosis. It's only been 14 months! And Mr. B has suffered for almost every day of it. Now I just want him to be released from the pain and suffering. I want him to enter the Gates of Heaven rejoicing that his healing is finally here and even though he didn't see his healing while on earth, he will receive it in Heaven. My heart breaks a little more when I think about the time when we will say our final goodbyes. I don't want a new title - widow. :-(
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.
I just returned yesterday from a week away from Mr. B. This was the first time I've been away from him since he was diagnosed with Multiple Myeloma. It wasn't really a vacation though. I wish it had been. People kept saying to me that I should have a good time and to enjoy some respite time. The truth was that I was dreading the time away for many reasons. My brother passed away on February 1 and he lived quite a distance away from me. He had been hospitalized for about a month but I was really hoping that he would manage to overcome the infections and he would return to his apartment. Unfortunately the last week he was in the hospital he took a turn for the worse and passed away. So since he lived in the same apartment that he had shared with our mother who passed away in 2005, I had to fly to Vancouver one last time to sort through papers and photos. The executor was looking after the disposing of the furniture and painting of the apartment so my time was just spend dealing with the papers and photos. I was very thankful for that. But staying in the apartment alone was very hard for me. It was hard to be there and not have my brother with me. He and I were very much alike. We understood each other. I loved him very much and will really miss him. My last night there was the hardest though. My parents moved out to Vancouver in 1981. The apartment building was brand new and they were the first ones to live in this apartment. Then a few years after my father passed away, my brother moved out to Vancouver to be with my mother. So I guess I felt like this was my home too. And now I had to say goodbye to it for the last time. I cried a lot the last night I was there and I cried a lot the next morning when I left it for the last time.
When I was away, even though I missed Mr. B terribly, I found that there were moments where I actually forgot that he was sick. I even had a few moments were I enjoyed the company of some of my West Coast friends. I actually started to feel normal again. BIG MISTAKE! I was lulled into a false sense of security and I realized that as soon as I opened the door to our condo.
Mr. B stood up with great difficulty (due to pain) and made one beeline straight to me. He hugged me and started to sob. I asked him what was wrong and he just said that he was very tired and felt like he had been treated like a piece of meat. It took some prodding but from what I could determine, he was upset about things that had happened while I was gone. Usually I look after being the go between when it comes to his doctor appointments or ordering his prescriptions. I had left Mr. B in the competent hands of his sister who is a retired nurse. Or at least I thought she was competent. I found out from his other sister on the way home from the airport that his temporary caregiver had taken a "hands off" approach with Mr. B and let him manage things himself. I was so upset. I had explained to her before I left that his mind was foggy at times from his medications and she would need to monitor that he was taking his medications correctly and on time. As I quizzed him later that evening, I also found out that she had not monitored his dose of Kayexalate and he had taken too much. I always pre measure that out for him because the nurses have cautioned us on how dangerous an over dose can be. So off we went for some more blood tests today to check on Mr. B's potassium level.
I should give some more background information. Mr. B had two bad falls in mid January. They happened two days in a row and required ambulance trips to the hospital. The second fall resulted in a new fracture in his back. These falls have caused a great deal more pain for Mr. B. But before I left, he seemed to be managing his pain better. Today though was not a good day so I was very happy that we had an appointment already scheduled with his pain doctor. I also asked the doctor if he could prescribe an anti depressant for Mr. B. I'm not one who usually supports taking pills for depression but I think that Mr. B is just struggling too much with this whole process of having cancer. We do see a counselor monthly but lately we haven't been able to see him because of how Mr. B has been feeling.
I would really love it if someone could break the connection for me. There were times in the past year when I wanted to run away and not return. I get so tired sometimes both emotionally and physically from trying to manage my husband's care that I want to disappear into my own little world where he isn't sick anymore. Losing my brother really hit Mr. B hard too. We both cared very deeply for him. Plus it was a reminder that we don't know how much time left Mr. B has. It scares me that he might be doing worse than I think he is. Even though his protein numbers are coming down from the Revlimid, his over all health doesn't seem to be very good. Now the past few days he hasn't been eating very well. Or that might even have been going on the whole time I was away. Today at the doctor he was weighed and was down almost 7 pounds since he was weighed about 3 weeks ago. His head is drooping even more than when I left him. The bones in his spine have deteriorated to the point where he cannot even hold his head up. Try kissing your husband goodnight when he can't even lift his head to do a simple thing like that. My heart breaks for him every day.
Yet, I know I will be ok. Having this week away gave me a taste of what life will be like once Mr. B is gone. The first few days were very hard but I did find myself starting to adjust to being alone. I know my life will never be the same and I can't dwell on the "what ifs". My desire is that I can make every moment that Mr. B has left on this earth to be joyous ones. I asked him if he would prefer his sister's caregiver method over mine. And he quickly said "NO". I may be accused of fussing over him too much but I would rather know I had done as much as I could for Mr. B than to feel guilty that I didn't do enough.
“Tell me and I forget, teach me and I may remember, involve me and I learn.”
- Benjamin Franklin
I think that this quote from Benjamin Franklin sums up the past year for me when it comes to learning.
Ten Things I've Learned in 2012:
1. I've learned about a cancer that I've never heard of before. It's called Multiple Myeloma. More people need to learn about this cancer. I plan to educate as many people as I can in the next year. But will it help? I've learned so much about this cancer because I am involved with it. Would I have cared enough to research it if it didn't affect my family directly? Likely not, sad as that may be.
2. I've learned how to read blood tests. Who knew that there was so much involved in reading blood test results? I've learned to watch red blood counts and white blood counts. I've learned when low hemoglobin is too low and needs to be treated with a blood transfusion. I've learned what M protein results mean and how important they are. I've learned that you can't always trust your healthcare professionals to monitor those blood test results. You need to stay on top of the results yourself because they are often stressed and over worked and can make human errors.
3. I've learned to be an advocate for my patient. I've learned that I have a voice and I need to use it when I feel that my patient is not being cared for in the manner that I feel is necessary. I've become a very mean mama bear when the situation warrants it.
4. I've learned that the people who you will find the most supportive are often strangers that are going through the same journey. That's because they "get it". They understand your pain and grief and disappointments and frustrations. It is an amazingly healing thing to hear someone say, "I'm going through the same thing". You feel like you are not alone.
5. I've learned that a simple cough can turn into pneumonia very quickly. I've learned that in less than an hour a person can spike a temperature that makes you run for the phone to call an ambulance. I've learned that you can't always trust your patient to make the best judgement call about going to the hospital. We almost lost Mr. B with multiple blood clots on both lungs because of it. Then a few months later with pneumonia and a few weeks later with blood infection. He didn't want to go to the hospital any of those times. I cried when I called the ambulance when he had sepsis because he asked me not to do it. He was so sick I was sure that he wasn't coming home.
6. I've learned that banks don't care if you have a serious illness. Even if you pay all of your bills on time, they still look at the total income and declare you not worthy to have a mortgage. I've learned how much money it takes to care for a sick person. I've learned that there are resources available for things like a hospital bed but no one tells you about them. I'm not sure what the big secret is.
7. I've learned that I can stay awake all night at the hospital and even function pretty good the next day. Who needs sleep? It's way over rated. LOL
8. I've learned that it is very easy to neglect yourself because you don't need one more thing on your plate. Even going to the dentist takes a backseat. I'm sure mine is thinking I found a new one. :-)
9. I've learned to accept help from people. I've always been on the giving end and not the receiving end. It makes me feel weak to constantly be reliant on others for things like rides to the cancer treatment center or to get groceries. We have been blessed by some incredible gifts from some of the people that know Mr. B and have worked with him. It humbles me.
10. And most of all, I've learned that each day that Mr. B is here with me, is a gift from God. I've learned to enjoy each day and be thankful for it. I've learned that some things aren't important anymore and to let them go.
And my final prayer is that 2013 will bring a cure for this cruel cancer. May you and your loved ones find peace and contentment in the next year. God bless you.