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.
Dianna
9/23/2012 09:03:32 am

Hi Shelley,

I think you have done a wonderful job managing the ball of yarn. No knots here.
It was good to read your new blog. You have been in my prayers and thoughts often.
My husband is also not a very social person. I have not worked since February and my boss asked if I could come help out for their busy season. My husband also seems to get more depressed when I am not around, and even though he said I could go work, I chose not to, but to stay at home and spend the time with him. Our retired neighbor has invited my husband over to play checkers, but my husband has yet to take advantage of this opportunity. For a while I could not even be in a separate room with out my husband wanting to know where I was and what was I doing. This is getting better though.
I was very happy that they are letting you work from home! What a blessing. Also, what are you knitting?
This is difficult time for us. I mentioned before that my daughter-in-law's father also had multiple myeloma. He passed away this last week after a two year battle. My husband took this very hard, as he was afraid that his disease was following the same course. so he was counting how many months he had left. I tried to reassure him that his cancer does not seem as aggressive. I reminded him that we should not assume anything with this disease and be thankful for each day that we have.
I will keep you and Mr. B in my heart and prayers. Remember when times are tough you have a friend who cares and is sending support over the long distance.

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Shelley
9/23/2012 02:40:31 pm

Hi Dianna,

It is good to know that someone else has made the same decision about not working so that they can spend time with their patient. You have no idea how much it means to me that you shared this. I also feel that I want to spend as much time with my husband as I possibly can because I don't really know how much longer I will have him with me. This past weekend he has been feeling very bad again physically. This seems to be the routine now but it is so hard to see him suffer so much each week.


I'm sorry to hear of your daughter-in-law's father's death. But do try to remind your husband that this disease is different for each individual and that his experience will not be same. I see so many other people with MM and I have found very few that are going through as hard a time as my husband is.

I'm still knitting bears. I uploaded a picture in one of my earlier posts. I call them my prayer bears since I pray for the person I am knitting it for. Right now I'm knitting one for a 2 year old boy that was diagnosed with a brain tumor about 5 weeks ago. I knit while my husband is getting his chemo treatments. I really helps pass the time and the lighting is very good there so I don't drop as many stitches. *g*

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Dianna
9/24/2012 06:02:16 am

Shelley,

When I first started reading the blogs, my husband commented "how could so many people with multiple myeloma jog, run, bike, hike or work?" It seemed like no one had multiple myeloma and as much physical damage as he had. They looked so normal in their pictures. My husband has lost about 6 inches in height, about 50 pounds and now is hunched over and cannot stand up straight. Even my daughter-in-law's father seemed to have faired better then he did. Well - We realize now how everyone's MM is different and there is no predicting the future, so we try to live each day as it comes. It is hard to watch my husband suffer and hard to watch him break out into tears. He was never one to cry, and usually was comforting me. Now on bad days he cries and I draw forth the strength to comfort and encourage him.
Our original plans were for both of us to retire and enjoy just being with each other and doing things for ourselves instead of for our children. I keep telling my husband our plans have not changed, we just have to include the MM as part of them.
Oh yes, I did see your bears. They are wonderful. Please have a good week.
Hugs for you and Mr. B

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Shelley
9/24/2012 03:24:42 pm

Dianna,

My heart breaks for you. Your description of your husband is almost exactly like my husband. He too has lost a few inches (might be more by now) and also 50 pounds. He's down to 167 pounds now and I'm sure will lose more since he isn't eating very well due to the nausea.

You and your husband are in my prayers.

Willa
9/24/2012 07:06:07 am

Hi Shelley,

I too chose to stop working to spend as much time with my husband as possible. We had that difficult talk about putting affairs in order and final wishes etc... It was the hardest discussion that we've ever had but he was very practical about life and recognized the importance of doing it.

Dave passed away in late July. He had a fungal pneumonia that just wouldn't go away. He was 50 years old. I feel very blessed to have had the time at home with him. We laughed, cried and stayed close to the end. While our lives will never be the same, I feel lucky that we were able to have that time together. In the end, he told us that we were going to be OK . He was looking after to us until the end even though he wasn't feeling well. You won't regret your choice to stay home, the time is priceless.

You are right, every individual with this disease has it differently. You and Mr. B are in my prayers. New treatments are coming out regularly, let's hope one of them will be the cure.

Please take care.

PS: Love the bears!

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Shelley
9/24/2012 03:36:14 pm

Willa,

I'm so sorry to hear that Dave passed away. My heart is hurting for you. He was way too young to die. This cancer is very cruel. It gives many years to some people and others it just grabs away quickly.

Thank you for sharing this with me. My thoughts and prayers are with you.

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9/26/2012 11:18:01 am

Shelley, you have demonstrated an excellent grasp of the English language in your blog, so don't let your past experiences with 'creative writing' be any measure of your future! I once was a teacher for two young men who were unable to read. They had been passed along in school just to get them out, no one realizing that the reason they were 'troublemakers' was because no one was helping them learn how to read. I started out by asking them "If you could read, what would you most LIKE to read?" They each brought to the class their favorite magazine - and we started there.

When we have something to say, we find a way to say it. As you have here... written something of tremendous value for MM caregivers. I think a lot of caregivers read info about MM and think "Oh, that's what it will be like." The cruelest aspect of this disease is that it can be so diverse and so undependable in its outcome... some get months, some get years and a few get decades. As a caregiver, from time to time, I am not sure I would wish my loved one to have decades of agony, but I do wish for there to be a cure for this disease - and in time for my own and other loved ones to benefit from it. Thank you for your story.

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Shelley
9/26/2012 04:18:26 pm

Sandy, you truly are an amazing example of what all teachers should be like. You reached these young men at the place they were at and didn't expect them to fit into someone else's box. I'm sure that they will always remember you for that dedication to help them learn to read.

You've also given me a new prospective to help Mr. B hold on as long as he can because a cure could just be around the corner. As much as I hate to see him suffer, the longer he can remain with us, the better chance there is of finding a new treatment.

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Mary
9/26/2012 01:44:10 pm

Shelley,
I was very happy to see your new blog, you and your husband remain in my heart and in my thoughts daily. Writer or not, there is something in your words that draws me to you. And though there are tears streaming down my face each time I read a new post you have written, I know I am not alone. Thank you for taking the time to share your life with us in the midst of all this chaos.

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Shelley
9/26/2012 04:28:02 pm

Mary, thank you so much for your kind words. I too was crying as I read your comment.

Sometimes when I write my posts, I forget that I'm not just sharing my own pain and frustrations, but I am echoing the same pain and frustrations from other caregivers.

Sharing helps me cope. And I usually cry when I'm writing the post. I'm always alone while Mr. B has turned in for the night and I let the floodgates open up. Sometimes I feel guilty that my posts seem to come from the negative side of things. I want so bad to have good things to report but the reality of our lives right now is that there are far more bad days then good days. But if I can reach others that are feeling alone and help them to know that I understand what they are going through, then it was the right thing to do.

So I hold on to the hope that one day Mr. B will be healed. It might not be while he is on this earth but rather when he gets to heaven. :-)

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Cathy Naumann
9/28/2012 11:26:03 pm

Shelly..So well written and if I could write it could be my story..actually it is!...right down to your Mr B not being social! I only recently found the MM site so never knew that others suffered like Bob as most of the patients we saw at the cancer center seemed to do so much better than him.And then occassionally have seen people post that their docs say there is no high risk disease..I beg to different. Bobs myeloma might respond to a drug for a while but then stops ..but when I read comments like that I feel bad and wonder if we have been treating him right..but in my heart I know we are doing everything we can.So..in 1 week we will start yet another new journey..and pray that he responds. I think of you often as we seem to be on the same path..only we are a few years ahead of you..So I hope that they continue to research and will find something to help us. I am glad that you are able to stay home ..I was not able to as I have the insurance that we need...now I am part time which makes it easier. Keeping you n my prayers

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Shelley
9/29/2012 04:09:59 pm

Cathy, I often feel the same way you do about how the doctor is treating your husband. Sometimes I feel like screaming at the doctor and nurse that they are not seeing him as a person, but rather just a cancer. They don't see how much he suffers day in and day out. They don't see him vomit and get the dry heaves day after day. They don't see him spend almost a whole day in bed because his back, ribs and shoulders are hurting him so much. And that's even when he's on a high dose of Fentanyl patch and breakthrough morphine pills. I feel that they are missing something that is causing the nausea and they just keep saying it's a combination of the chemo and drugs he's on. But if that were the case then you would think he would have been with the nausea right fromt he start. Now it just seems to get worse each week
. :-(

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