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HELP END BLOOD CANCER

Friday 25 April 2014

Good to go

For the last couple of weeks, I have been getting used to being back at work, fundraising, and getting myself into a more athletic state. None of these have been easy, but they are all helping me in their various ways.

"Dug" the dog in the movie "Up"
I am glad to be back at work, among my colleagues and trying to be productive. One of the current issues I have is an inability to keep focused. I experience this in more than just work, as I have a hard time reading, or even gaming, without everything distracting me. I cannot even stop the distractions, be they external or in my own mind. This frustrates me, as I used to be a very focused person, the kind that could get into a book or a game to the extent that I would not even hear people talking to me. The number of times my hubby would get up from his computer desk and tell me he was going to make dinner, only to come back to get me an hour later because my food was getting cold, and I had not even realized he had gotten up or spoken to me! I am hopeful this is just temporary, and I am really trying to pull my attention back to the work at hand. I call this the "squirrel" syndrome, after the dog in the movie "Up" :)


Fundraising has been going very well. I had no idea what to expect as I have never done this before. So I aimed rather low, and started early, figuring that way I could get some done before  I get busier with work, training, and summer stuff around the house. I have mainly just been emailing friends and colleagues, telling them what I am doing and why, and the generosity so far has been amazing. I find it a great comfort that so many are willing to help out for a good cause, in memory of hubby. I met my initial goal within the first week, and met my second goal as of today. The support I am getting beyond the fundraising is also wonderful. Each word of encouragement just confirms that I am doing the right thing with this endeavor. So, thank you!!!!

As to the actual physical part of this, the running, I am good to go. My friend "L" has been a great help, giving me excellent guidance on gear and motivation. She is an experienced marathoner, who is now attempting to move to the triathlon scene. About 2 weeks ago, she took me shopping. I love her attitude about what is worth the money and what is not. Shoes and socks are super important, so those we went to specialized stores to obtain. I was expecting to pay $$$ for shoes- I mean those are taking a lot of abuse when you run. I was quite surprised about socks, although they also make sense. So $150 on shoes was not shocking to me, but for some reason $15 for a pair of socks was :) But if I am doing this, then I will listen to those that have done this, and the advise they give me. For clothing, "L" was less inclined to go to the specialized stores, and instead we went to a lower priced department chain. I did learn about the importance of clothing that did not hold moisture (wicking fabrics good- cotton bad), and something I had not considered- seam placement and chaffing potential. This apparently is of concern also with sports bras, but as I told her, I am happy I was able to find ONE that works, as there is not a lot of choice for me. I could not even have considered running until fairly recently because there was nothing suitable for "bounce control" in my size. I will deal with chaffing if it becomes an issue. She did point out an interesting item in the one store, a product called "Bodyglide" which I gather is used to combat the chaffing issues. I have to say, it reminded me of, well, lubricants, and the thought of slathering that on before running is not something I want to contemplate. Yet. Let's tuck that into the "advanced topics" folder for later. When I am comfortable with $15 socks.

Brooks Pureflow 2 (above) and
Saucony Powergrid Ride 6 (below)
I really have no idea what type of shoe I prefer, beyond how it feels on my foot and the need for cushioning. One salesperson was telling me about the need for super light shoes for races, and how he loves to feel the road. When you are built like me, "feeling the road" does not sound like a good thing. I want cushioning and lots of shock absorption. :D That said, I ended up buying 2 pairs. One I got on sale, and is a pair of Brooks Pureflow 2.0s. These are sort of minimalist in that they are pretty flat from toe to heel, but they also seem to have decent cushioning, especially for the midfoot region. If nothing else, I hope they will allow me to experience that type of stride, as for the most part I feel that I am more a heel person, which I gather is not the most efficient. If they don't work out, at least I won't feel bad about wasting money. The other pair I got was a pair of Mizuna Wave Rider 17. In the store they felt very nice. There were other pairs that felt nice too, but at the time I was there, they had a warranty whereby I could wear them anywhere and try them for 60 days and still return them if I was unhappy. I walked/jogged in them once, and found they were too narrow once my feet got warm, so back they went. Now I have a pair of Saucony Powergrid Ride 6. They seem much better. I also have an older pair of Saucony that I had bought last year when I thought hubby was better and I was starting to try some jogging (without success as I overdid it too fast). I am now rotating between all of them.

One thing I just have to mention with respect to running shoes, and actually most athletic shoes I saw. Are manufacturers having some sort of contest to see who can make the most gaudy-butt-ugly pair or something? The choice and mix of colors is just awful. I have ended up with ones with purple, not because those are TNT colors, but because that was the only color in my size of the on-sale Brooks, and unless I wanted to go with the more expensive, and hideously colorful vizi-glo ones, grey and purple was the only other choice for the Saucony pair. My older ones from last year happen to be a very bright turquoise with fluorescent orange, but again, I got those on sale. I can forgive a lot once the price goes down.

"L" also loaned me some hydration belts to try, to see if I have any preference, before I buy any of my own. I certainly now have a better idea of what will and will not work for me. :) I thought the ones with the four smaller bottles would be wonderful. Ummm no. How the belt sits on my waist and where the bottles fit (even if I rotate the belt some) is pretty much right in the way of my arms. I did however like the elastic nature of that belt over the ones that are just nylon and buckle affairs. So I will look for something that has the bottle(s) at the back, and also has the comfort of stretchiness for a secure fit.

Who knew that there was so much to know and learn about gear for a sport as simple as putting one foot in front of the other with a bit of speed???

Another thing "L" did was give me a beginners schedule for starting to run, since I felt it was a real shame not to use the almost 2 months before TNT training kicks off to so something towards the goal. I have been using it since about the second week of April, but am not advancing to the next "week" unless I am comfortable with my progress and how I feel. So currently, I am doing a mix of


Me out in the April snow
Week 2 Walk 1 min, run 1 min, walk 1 min X 10 sets (run 10/walk 20)
Week 3 Walk 1 min, run 2 min, walk 2 min X 6 sets; run 2 min, walk 1 min (run 14/walk 19)

where I go out every other day. I am also going out no matter what the weather. So I have been out when the temperature has been at freezing, in the wind, in some snow, and also rain. I am well aware that I have no control over what the weather will be on race day, so no real point to only heading out on fine days. Not that mother nature has been giving us many fine days yet :) "L" gave me some great advise to help me get my butt off the couch and outside- tell yourself that you will only go for 10 minutes and if its really that bad, you can then come home. She said she has never done just 10 minutes, and so far, neither have I.
 
So far, I am liking the activity. My brain goes mostly calm, apart from wondering how long I have left in the running intervals and wondering how many more run intervals I have left. :) I listen to music, and just try to enjoy it no matter what its like outside. Right now, its not my breathing side that is getting tired. Yes, I do breathe harder and faster, and my heart rate goes up, but I am held back more by my legs adjusting to this new activity. My shin muscles are not used to the exercise and they like to cramp up. Usually about half way through the above workouts they do this. So I have to walk for one of the run intervals and then they are fine again, and I can continue. I am being very cautious about increasing things too fast, as last year I did that and ended up with shin splints, which basically stopped me from continuing past a few weeks. So now I am on the lookout for any pain that persists. So far, the slight pain I get is only for that brief window at around the 15-20 min in mark, and is totally gone when I am done. So I feel things are okay.

I did break down and purchase one more item. Really, the techie in me could not resist. I did argue with myself about the cost, but then I asked myself "What would hubby have done?" He was even MORE of a tech gadget person than I am, and I knew he would have bought this before he even got shoes! So I now own a nice GPS runners watch, so I can track my distance/pace/time and also program in the intervals so that I don't have to keep track of that sort of thing manually. However, unlike what he would have gotten, I did not get the fanciest thing on the market, and just went for one that seemed to do what I required right now.

I am trying to eat a bit better now than previously- we had a lot of high calorie meals to keep hubby's weight up during the months and months of chemo and the time post stem-cell transplant. Better for me means more "green stuff", and more fresh rather than processed/pre-packaged foods. I love meat and pasta, and veggies tended to get in the way. Now I make sure they are part of every main meal. I am cooking in bulk on weekends and freezing it (pasta sauce, chili, stews), so that I don't have to spend too much time making things during the week. If I do make something during the week, its something like chicken Souvlaki or steak, which do not take very long. I am not much of a cook, and in fact hubby was the main cook in our house, with me helping him and doing the BBQing. With the addition of working out to my life, plus having to assume all the household chores, any time savings I can find are a bonus!
 
So, since I am also doing this to get back in shape (as well as fund-raise), I should be honest about my current shape and fitness. So, here I go, posting my weight publicly for the first time ever. At the time my hubby passed away, I weighed 190 pounds. I am only 5'4". According to all the charts, this classifies as obese, not simply overweight. At the time I started to use the schedule from "L" (about 7 weeks after his death) I was down to 180 pounds. The grief diet works wonders, but I do not recommend it. I am currently at 176 pounds. According to the body fat gadget I found in my hubby's office (that man seems to have acquired one of everything if it was a gadget !) , I am at 36.7% body fat with a BMI of 29.7.  My exercise level going into this would be best described as light to none, although we did occasional walks in the last half year or so. I did bike about 4-6 km most days until it got cool last fall, but that's not really a huge workout. I will update my progress on the "fitness" front from time to time as I continue this journey.


  

Monday 7 April 2014

Sometimes making lemonade is hard

I recently read another blog where the poster was writing about the loss of her brother to cancer, and the impacts to her. She wrote about how the world revolves around your loved one during their illness, and that in the end, what will happen will happen, and its all about how you deal with it. Her words resonated with me. Whether your loved one is a sibling, a parent, a friend, or a spouse, the experience of being their loved one will be that of a supporter who puts their own cares and life on hold to be there for them. Most of us do this willingly and gladly.

Yet no matter what support you give, you really have no control over the outcome of the battle, only the manner in which it is waged. This can be a hard fact to deal with, for both you and your loved one. Yet it's probably the most important one to come to terms with, so you can have the right attitude to be your loved one's most valuable supporter. Doctors, nurses, and other professionals can help with the physical portions of the battle, but you will be one of the primary emotional pillars during the fight. It's a tough role, but also one that is incredibly fulfilling, despite the challenges. You get to be the one to make them smile, and to otherwise brighten their days. You keep them feeling loved, and help keep them wanting to fight.

So many people said to my hubby and I during his cancer battle that they had no idea how we could laugh and smile and still have fun. They told both of us they admired how strong we were. I don't see it as strength so much as an appropriate survival mechanism. Simply put, suppose the worst were to happen- would you want your last days with your loved one to be all doom and gloom, or something special, wonderful and still very much full of love, caring, and even fun? For me, there was no choice, and given that the worst DID happen, I know that it was the right way to be. Anything else and not only would I be dealing with my grief now, but also a fair amount of guilt over things said/not said, or done/not done. There is a large amount of validity to the saying "Live everyday as if it's your last". You don't ever know what tomorrow will hold.

This attitude towards dealing with adversity should not change now that I am learning to be just "me" instead of "we", which is a different type of hardship. This attitude is summarized as making lemonade with the lemons life has handed you. This does not mean that it's easy. I can tell you that hubby and I sure had some moments of sadness and fear and all kinds of other emotions throughout his fight. When these happened, we drew strength from each other, and comfort in knowing that our fears were shared. Then we would make some new plan, even a small one like what to have for dinner, and get back to living, loving, and laughing.

The last few days have been hard ones. The grief has been almost crippling at times. This despite knowing that it's not what my hubby would want for me, and having the great support of friends and family. Logically I know that mourning is a roller coaster, but that does not make the low times any easier to bear. So many things remind me of what I have lost, from seeing other couples together, to happy endings in movies, and even sad ones.

Until you lose that significant other in your life, you won't truly appreciate how much their presence adds purpose to your life. The need to tell them how much you love them. The desire to share some interesting tidbit from your day. Looking forward to having a hug/kiss and hearing them tell you how much they love you. Planning some special thing to do together. The comfort of knowing they will be there for you and vice versa. The list goes on and on- a myriad of small things that collectively add up to a whole lot of meaning and purpose in your life. When those are suddenly gone, you feel their loss keenly. You are adrift in loneliness in a life that seemingly no longer has meaning.

You find that things you used to do for fun are no longer appealing, as they serve as a reminder of times BEFORE. The inability to do activities that used to provide relaxation and stress relief just compound the feelings of loss, and reduce your ability to deal with the new reality of being "alone".

Friends and family are great to lean on, but there are many things that they cannot do that your significant other did. For me, its the loss of that shared intimacy with my hubby that knocks me backwards and sets off the worst moments. The lack of someone telling me they love me in the morning. The hugs and kisses when we got home from work. The MMO gaming partner to joke with sitting beside me. The comfortable body to snuggle next to on the couch when watching a movie. The list is endless.

It's in these times that I am desperately in need of purpose and meaning. I can reach out to friends to ease the loneliness, but they can't fill the big hole where my hubby used to be as my central reason for being. This is another reason why I went back to work after only 6 weeks off, and why I registered for Team in Training. I need to try to give some meaning to what has happened, some routine to my days, and something new and different to do until I can do the things I used to without getting smacked down emotionally. It won't fill the hole that his death has left, but it does give some purpose to my life, and maybe that can serve as a bridge to get me from grief to healing.

Sometimes making lemonade is hard, but it's better than letting the lemon's leave a sour taste in your life. Or at least that's what I keep telling myself. Most of the time I even believe it.




Wednesday 2 April 2014

And so it begins...

This journey actually began almost 27 years ago. I met the most amazing guy at my summer job before university, and fell in love. However, right at the same time we were getting engaged just 3 months later, my wonderful fellow found a lump in his groin. It turned out to be cancer, specifically Hodgkin's Lymphoma. It was somewhat of a downer on what should have been a happy time, but truthfully, I knew he was the one for me, even if we only had a short time. Luckily, with radiation treatments, his cancer was beaten into remission. We got married. We loved, lived, gamed, traveled and generally had a wonderful time. We were best friends. We seldom did anything separately.

Fast forward through 24 years of bliss. My husband got very sick over Christmas 2010. We put it down to a nasty viral strain. Then in March 2011, he started having night sweats, the kind that drench the bed. Just as he thought about going to the doctor about them, they went away. In June, he started having severe back pain. He went to see a doctor, and of course they thought it was just normal lower back pain that would clear up in 6-8 weeks on its own. Only it didn't. It got worse. By end of July it was excruciating and he couldn't even sleep. Then he got scans done. Near the end of August he saw his GP for the results, and the GP was ashen and told him it looked like he had multiple tumors all along his spine and there was something also in his chest. An appointment was made to see any specialist that could take a better look ASAP. It happened to be a respiratory specialist. He looked at the scans, showed us the areas of concern (which were numerous tumors, including one that was pressing on his spine), saw how hard it was for my husband to even walk at that time, and he immediately sent us to the hospital ER for assessment by neurologists.

This turned into more scans and waiting. After determining that paralysis was not an immediate danger, they sent us to another hospital where there were hematology oncologists. After another ER wait and visit, my husband was admitted that night and stayed in the hospital for almost a week of testing. He could barely walk, and was in need of strong painkillers just to try to get some sleep. They confirmed it was indeed cancer. This time a non-Hodgkin's Lymphoma, specifically Diffuse Large B Cell Lymphoma. They started him on R-CHOP chemotherapy. The good part of that was that the steroids shrunk the spinal tumor and the pain went away. He still needed physio to regain his walking ability again however. Apart from the time for the testing, and the days of the actual chemo, hubby continued to work throughout everything.

After five months of chemo, the tumors were mostly gone, as was the loose cancer that was floating about the empty regions of his chest cavity. However, there was still something in his hip bone. Because of his prior cancer, they were concerned about using additional radiation to target just this other area. So they decided on going with high dose chemo, with a rescue autologous stem cell transplant. In June 2012 he underwent this procedure and came through it with flying colors. By November he was declared to be in remission. And he returned to work in November as well, only being off for 5 months.

In May 2013, the night sweats returned. We both knew what that meant this time. Sure enough, in late July it was confirmed that the cancer was back. They started him on a new chemo regime, CISplatin and gemcitabine. He had 6 rounds of that, with the last one in December right before Christmas. In October the doctors told us that the only chance he had for a cure was to have an allogenic stem cell transplant. They told us that it was riskier than the one he had before, with a 20% mortality rate. Hubby and I talked about it, but both of us came to the same conclusion. If we didn't do it, the the risk of death would be 100%, likely in a year or two, and likely to be prolonged and painful. The transplant had a good chance of helping us have longer than that, with higher quality of life, but the risk was that death could be rather sudden and much sooner. Hubby decided he wanted to do the transplant. If he had to die, he preferred to have something that would be more sudden than to waste away before my eyes and need a lot of care in the process. I had to agree with his view.

The official search for a donor kicked off in late November. So at the end of January, after a suitable donor was located, hubby began the high dose preparatory chemo for the transplant, and on Feb 5 2014, had the transplant. All the drugs he was on before the transplant and after to help minimize the rejection and graft vs host side effect did not agree with him however. His kidneys in particular were not happy. He was constantly nauseous and could barely eat. He was started on feeding tube, but he managed to pull it out over night after just 2 days. The kidney function got worse, and they finally had to start him on dialysis on Feb 16. By then, he was suffering from the toxins in his body, and was rather confused and delusional. It was not pleasant to see him that way, and it really upset him the few times he realized that he was so "messed up". I knew it was not a great time, but I had no idea when I left him at 1 am on Feb 18 that I would be called at just after 7 am to be told of "a change in his condition" and arrive at the hospital as quickly as I could get there (which due to snow and rush hour traffic was over an hour) to find he had passed away.

I was devastated. I still am. It's only been a month and a half since he died after all. How could my wonderful husband, my best friend, one of the most vital people I know suddenly be gone? Truthfully, it still boggles my mind and I don't think I have accepted it. I cry myself to sleep every night, and usually cry again as soon as I wake up.

So, what then is this journey that started so many years ago? Well, when my husband was diagnosed with lymphoma this last time, I made a promise. When we got through this one (and I was sure he would), I would sign up for the Leukemia and Lymphoma Society's Team in Training.  I would raise money for a cause that was really close to home, and also get back into shape, something my husband really wanted me to do. I tried so many times over the last 3 years, but frankly, when push came to shove for how to allocate my precious free time, I chose to spend it with him. When he could come with me still, I would run while he biked beside me, or simply just bike or walk with him. But when he could not do that, I spent my time beside him, or just in the same room as him. Given that he is now gone, I stand by my decision. Those moments with him are now all I have left. My health I can attend to now.

When I made that promise to run back in 2011, I was expecting to have my husband cheering me on, or maybe even running with me. However, I will still fulfill my promise, in his memory.  LLS provide support and training to participate in an endurance event while the participant fund raises for their cause. I encourage anyone reading this to check them out  http://www-prd.teamintraining.ca/en-CA/our-mission .

And so it begins, my journey to go from being an overweight gaming geek to that of a half-marthon runner. I have registered for my event, which will be the Scotiabank Toronto Waterfront, on October 19, 2014. Training will begin officially in June. Until then, I am going to try to be active each day in some form, and to walk and maybe add a jog for a bit in the mix just to get a bit of conditioning on this flabby form. This blog will be my journal of this journey.

GeekGal and Hubby, Alaska  August 2008
GeekGal and Hubby, Alaska
August 2008