Doing this together

 So it is almost time for the elections here in the USA and the social media and regular media posts are full of opinions, vitriol, dire predictions from all sides. I have my opinions on the matter and I will be placing my first vote as a US citizen this election round. I might have even used this post to share my opinions but after many sleepless nights worrying, I am brought back to a statement by a friend of Alan's (not a Latter-day Saint), "Politicians may come and go but at the end of the day, Christ is still King." I loved that. It is what drives my beliefs and my actions so no discussion on politics today.

I wanted to follow up on something from my last blog about being part of a multiple myeloma challenge during the month of September to move at least 20 minutes a day. To some of you, this may seem very small but it was a huge hurdle to me at the beginning of the challenge and I was so excited to get past it. It was a key to my returning to a virtual state of "normal" again. 

What I didn't add was that I am part of a wonderful organization that has been a big help in my journey. Yes, I have my wonderful family, my friends and church family but I needed more. When I was first diagnosed with cancer I began to google the disease because I had never heard of multiple myeloma before. As I have mentioned previously, what I saw on Google frightened the daylights out of me but I did find this organization online called the Myeloma Crowd that gave me some life saving information, literally. 

This non-profit organization gathers people with this disease from all over the world and is dedicated to providing the most up to date information, to supporting research and to generally providing moral support to sufferers of the disease. As luck would have it, it was founded by a multiple myeloma sufferer right here in Utah. The advice I read back in December of last year was that if I found a doctor who was a specialist in this cancer then I would increase my life expectancy by 38%. That figure alone led me to search for a specialist and I am so grateful to be receiving treatment at the Huntsman Cancer hospital as a result, with a whole team of people who do nothing else but treat Multiple Myeloma.

Having said that, I couldn't bare to look at any more material for a while because it felt all too overwhelming and scary, as I have also mentioned previously. I have gradually felt much calmer and more able to handle information, although a little at a time. My first return to the Myeloma Crowd was when I discovered that they have a coaching service. I found this wonderful woman who lives all the way in Michigan. She has been dealing with Multiple Myeloma for the past five years and is also a nurse so she has been so helpful to me as we have spent hours on the phone over the past six months. She has talked me through what to expect with so many of the procedures and the treatment plans but also to talk through my emotions, my fears when I didn't feel really able to speak to anyone else about it (husband excluded here). 

More recently, I have felt stronger about participating in their regular "round tables" where they bring in Multiple Myeloma experts to talk about treatments, latest research and to answer day to day questions. I have to tell you something that amused me at this point. I have always been 5'6" tall. It is written in my passport and on my driver's license. After my diagnosis they measured me at the hospital and I was barely 5'5 1/2". I kept protesting that something was clearly wrong with their measuring equipment.  I did wonder why they persisted in measuring me regularly. Then just recently, a seminar was held by the Myeloma Crowd on the effect on the bones of the disease. One of the doctors presenting told us that some patients lose as much as 2-3" in height because of the effects of the disease on the bones. I realized then that losing a half inch wasn't so bad after all. It was a new piece of information that helped put things in perspective and I actually laughed out loud on discovering this.

Having people around me who understand where I am coming from is so important to me. I don't have to minimize, I don't have to pretend that all is well on days when it clearly is not. I am able to explore in the confidence that they will still be there at the end of it all. During the challenge to move, there was a chat group that worked as a way of allowing daily connections with almost 500 people participating from all over the world: USA, Sweden, Netherlands, France, Australia were some of the countries I saw. During that month, at least 3 of the participants died of the disease and others spoke of their difficulties with side effects and treatments. It was both sobering and yet oddly uplifting. We were all in this together and we lifted each other through the hard bits. We also celebrated with others who described successfully navigating their way through a procedure or treatment. 

In the end of the day, so much is about attitude and changing perspective. I could dwell on the negative parts of being a cancer sufferer or I could choose to look at it all differently. Take a simple example. Yes, I have lost my hair temporarily but on the positive side I use way less shampoo and I don't have to carry a hair brush in my handbag. Now that winter is approaching fast in Utah, I don't look so different in my nifty little soft hats. When I am experiencing night sweats with my chemo treatment, I no longer have my soaking hair wet my pillow which, believe it or not, is pretty great news for me.  That same medication has kept me awake in the early hours of this morning but here I am writing this blog. Always something good to focus on.

On an even deeper level, in the face of death I feel more alive than ever. I wake each morning and am grateful that I have a day ahead to achieve something. I am purposeful in planning my time to make the most of it. At the same time, I am oh so much gentler on myself so that if I need a rest, if I am just plain tired, I take time out for a nap. After years of dieting to maintain a healthy weight, I have no sense of guilt when I feel like some apple crisp with ice cream for lunch. Mind you, my new challenge is keeping the weight on so that does help. I am doing great in this department I might add. 

Alan's plaster hand for my time in hospital

One of the greatest blessings of this journey is the increasing closeness and vulnerability that I feel with Alan. We are exploring depths of intimacy that cancer has enhanced. We have been through so much together over the 8 years of our marriage but this particular challenge has been particularly poignant for us. We are actually writing a book together that we have talked about for years but are now finally doing. Eternity looks like a lot of joy, fun and excitement from this perspective. Life is good!

PS if anyone is looking for a good nonprofit you would like to support financially, I highly recommend the Myeloma Crowd as they are doing some pretty amazing stuff and make a little money go a long way. www.myelomacrowd.org

I'm on a marathon; not a sprint

When I was a little girl, I was known to be a slow mover. If you can imagine those days at school when it was sports time and teams would be chosen by a selected leader, one by one. My memories were that I would always be one of the last ones selected because I was just not fast enough. I might add here that I became very creative about getting out of these selection processes such as offering my services to the teachers as a go-for person to run errands. Family members would chastize me to move more quickly until one day, I was involved in an art class. We were putting together a very delicate mural-type art piece. Each addition to the mural had to be dry before the next layer was added or else the whole thing was ruined. As it turned out, my mural was the only one in that class that was successfully finished because my slowness turned into patience and I carefully waited until I was sure it was ready. I received less criticism after this event.

I further learned about turning my supposed negative trait into a strength as a swimmer. Swimminng was something I adored doing and I had joined a swim club. I never won any races because I was just too slow but I was the one who could swim the longest. It was nothing for me to swim 80 lengths of the pool. In the morning of my childhood summers, before breakfast, I would go to the pool and swim for a mile. I repeated this after school and if I could get away with it, I would return after dinner and do it all over again. I can remember once that I knew that it was time to give up swimming for the season when I dove into the outdoor pool in my home town and broke ice. I learned way back then that I have an ability to endure, that my slowness translated into a determination to keep going, endlessly. 

Little did I know that I would constantly have need of this particular trait. Initially, when I was diagnosed with cancer, I would have done anything to be cured virtually immediately, or at the very least very quickly. When I went through the difficult procedure of the stem cell transplant, I had hoped like crazy that this would put me into remission and my life would return to normal, or at least as normal as possible. 

The week before last, I undertook the planned barrage of tests to determine if the cancer had disappeared. This week, I met with the doctor and PA to receive the results. It was a mixed bag. They happily told me that there was no cancer detected in my bone marrow and not in my urine sample. However, there was still a small amount of cancer found in my blood samples. This one fact changed my future treatment drastically. I was not in remission after all, but I was told I would need to go back onto the same chemotherapy treatment I experienced before the transplant although at reduced levels. The doctor told me in a matter of fact way that I would be on this treatment for at least another year and then they would review the medications. He added that there was no going back with this cancer: I would always "have it" even if they managed to get my cancer levels to zero because it was not a curable disease. (This is a new doctor who is not as positive as my previous one who has been transferred to Maryland to undertake research.) 

Naturally, I was very disappointed. I asked myself, "Can I do this and keep doing this the rest of my life?" For a couple of days I was not really sure of the answer, even if I had no choice in reality. It took me a little while to remind myself that yes, I could do this because it is in my nature to endure. It is in my nature to be a little slow about things, or, in a positive light, to be patient. It seems that I am still needing to expand on this skill and am being stretched to practice it. 

There is a whole world of difference between my swimming and coping with the long term affects of cancer. As I reflect on my future, I have come to understand that just hanging in there will not be enough. I am working on a whole attitude shift. Until this point I was focused on the results of the stem cell transplant and making it to this stage. Now is the time to think less on my treatment and more on my life, if that makes sense.

My attitude needs to be more one of gratitude which will carry me through to the end. So what do I have to be grateful for? At the time of diagnosis just before Christmas, I was one very, very ill woman. I could barely walk; I was in excruciating pain every night; I felt constantly ill and was unable eat much. I was hospitalized at the beginning of January for two weeks because the cancer played havoc with my kidneys. Although progress was very slow at the beginning, after the stem cell transplant, I am feeling more whole than I have done for the past year. My kidneys have bounced back and are doing their job again. 

During the month of September, I enrolled in a challenge with other Multiple Myeloma sufferers from all over the world to exercise at least 20 minutes each day. At the beginning of the month I pushed my limits to get to the 20 daily minutes. By the end of the month I had pushed myself so much further and was doing 200 minutes of exercise a day, walking more than 22,000 steps and climbing part-way up the mountains of Provo Canyon. I am able to eat almost normally again, having lost the metallic taste that plagued me previously. What is there not to be grateful for? Before I go back onto my chemotherapy regime, Alan and I are taking off for a few days into the wilds of Utah. That is a major move forward for me. 

I know that there will be more ups and downs in this journey but I'm in this for the long haul. I am clear that this is a marathon and not a sprint.