Life with Waldenströms Macroglobulinemia for 14 years.

(Please note, this is my translation from Icelandic with the help from Mr. Google so the English is not perfect, but hopefully good enough for native speaking English to understand the content).

 

Prologue:

The reason that the following reflections, thoughts and narratives are set down on a page serves three-fold purposes.

Firstly; for myself. This method helps me to better understand my thoughts and speculations. Helps me remember what happened, review and put in context with whats going on.

Secondly, to inform my friends and family members together with the many who have through the years been asking me about my health and have shown me great support, about what Waldenströms Macroglobulinemia is. Many of those who are diagnosed know much better than I do about the disease.

Thirdly; to inform my new community, diagnosed with Waldenströms Macroglobulinemia, about how I have consistently used running as my mental and physical approach to addressing the challenge of living life with incurable blood cancer. Although it has been my method, I do not doubt that any other activity that suits each and every person can do the same benefit as running has done for me. My family and friends already know the running story, because I have blogged regularly for many years.

 

I. Section.

The years before, treatment, life after first treatment.

Preface:

Being diagnosed with incurable cancer is an experience that no one wants to experience. But those diagnosed sit up with the diagnosis. What does that mean? What next? What can be done? How long time do I have left? How will this be? Many questions go to through ones mind. But in the end, this is simply a part of being a person. Much happens during a lifetime that affects each one. All those events and all the experiences we experience will be part of us. First, I thought; why me? I think that is a normal reaction, but fortunately I quickly managed to change that thought to; why not me? After diagnosis this is simply a part of me and it doesnt change anything to think what if I had not been diagnosed. That didnt happen and therefore it is not my story.

When I was diagnosed on December 23rd, 2005, at the age of 38, the doctors were having difficulty diagnosing exactly what disease I had. However, it seemed clear, that it was some sort of a blood cancer. About three weeks after the diagnosis, it was said that it was most likely some sort of leukemia called CLL (Chronic Lymphocytic Leukemia).

In the next 7 months I received 6 treatments with the drugs rituximab, fludarabine and cyclophosphamide. Since then I have regularly visited my doctor for follow up.

About 2 years ago, I received the information after a marrow analysis, that I did not have the leukemia CLL but a blood cancer called Waldenströms Macroglobulinemia (WM). Of those two WM seems to be a little better.

I did not particularly mind this and did not investigate much what this "new" disease meant. I simply continued my daily life and continued with my follow ups with the doctor. At the beginning of the summer of 2018, however, there was a knock on the door. Falling values and likelihood of having to start chemotherapy again. In the next blood test, the levels were better and in the case of WM, postponement of treatment as long as possible is generally considered the best option. But in the end of the summer the values began to fall again. Now it seems unavoidable to start treatment and the question is only when. The big question in my mind is, whether I can finish running marathon in the 7th continent, Antarctica now in March, before treatment must start and whether I will have the energy to it.

I made the decision in the beginning of this year to look my "new" disease in the eyes and try to understand it better. I found out that the disease is considered rare and probably fewer than 30,000 people in the world have it. That is considered a low number. However, I found out that despite a relatively small group of patients, they have formed a very powerful patient organization and they have a very good website: iwmf.com (International Waldenstroms Macroglobulinemia Foundation).

In my newly started research I have found out that it is considered pretty good to have lived for 13 years without any symptoms after the first drug treatment. But having been as long as I have asymptomatic and during that period kind of changed disease, at least subjectively, means that I really feel like being diagnosed again for the first time. So I have used the IWMF website thoroughly, and most importantly, I have read the patients stories; Stories of hope, some of which have survived quite a long time with WM and through many treatments. Through these stories, and indeed other topics I have read, it can be seen that the disease affects people quite differently and with different symptoms although much is in common.

Although my story is just beginning, I am at least convinced that my method of dealing with life after diagnosis has benefited myself well. Like others, diagnosed with WM or not, I have had to deal with what life has handed us, the good and the bad.

For the recently diagnosed WM, my story is just one of many good stories. One more story that tells us that we have a future - even a long future without too much intervention on our lives. I am grateful for 13 good years after the first treatment and am optimistic that I will have a long future ahead after the next treatment and the treatments after that.

 

1. Chapter. The years before.

I suppose the disease began to evolve in 2004. The reason I believe this is that this summer I started to run occasionally and I noticed some changes when the year went by. I never ran very far and always one of two circles that were about 7-8 km long. In the fall, I noticed that it was more difficult to run uphill. As the winter progressed, I found the endurance was diminishing and I felt I had less power to play indoor soccer once a week. In the summer of 2005 I traveled to New York and I remember very well that when we went to see the Empire State building, there was some failure in the elevator so it didnt go up to the top and we had to walk up the stairs the last 20 floors. It turned out to be surprisingly difficult and I remember that I was very unhappy how bad shape physically I seemed to be in. In the fall I continued to play indoor soccer once a week but now I had to take a short rest in mid-exercises. On December 22, 2005, I went to the gym, as I had done all autumn, to try to improve strength and endurance. After training, I went to a hot tub and sat there for a while. As I got up and was going out of the tub, I almost passed out, and I just managed to grab the railing so I didnt fall. There for the first time I realized that my condition was not normal and that I needed to be examined. Probably you can say that I was particularly long to realize that there was something wrong with me. But it simply never occurred to me that it might be. I was a man of the best age and there had never been anything wrong with me. It just couldnt be that something was wrong – except maybe unusually long cables in my head!

At this time, it is safe to say that it should have been easy to get an examination. I was at the time working as the CEO of the Icelandic Medical Association with doctors all around me and worked with them daily. When I came to work after lunch on December 22, I discussed the incident in the hot tub with the chairman of the Medical Association, colleague, healthcare professional, and my friend. He immediately sent me to have my blood examined. The next day, I was having an Icelandic traditional lunch before Christmas with my wife and wifes family when he called. He told me to go to the National Hospital emergency room immediately, he had already called and let them know that I was coming and told me that a certain doctor, whom I knew well since he was on the Board of the Medical Association, would receive me. When I got there, he told me that something was wrong and as I understood him it was not certain that I would survive my illness.

For those interested, my values at this time were the following:

Hgb 61 g / L (male standard is 135-175 g / L)

Platelets 46 g / L

IgM 31.45 g / L

 

2. Chapter. The treatment.

There is little to say about the treatment. It was tolerable. I was given the drugs rituximab, fludarabine and cyclophosphamide. These drugs obviously proved to be good for me and it has been discussed that it may be wise to try this combination again, even though newer drugs are on the market. I think I like the idea, although I have read that certain side effects may follow the fludarabine drug in the long run.

 

3. Chapter. The disease.

What is Waldenströms Macroglobulinemia? For the "recently" diagnosed, it is simply not easy to describe the disease other than that it is a blood cancer or lymphoma. Most people are diagnosed in their sixties, although there are obviously anomalies. More men than women are diagnosed. The disease is incurable and until recently, median survival was reported to be about 5 years after diagnosis. However, it has more recently changed to 14-16 years. And now it has changed more since now it is even said that it is not possible to speak of any "median survival" because today too many patients are still alive so that it cannot be calculated yet. I just dont care though it will never be figured out!

But otherwise, the disease is described as anemia and possible increased blood clotting, which may increase the risk of nasal and oral haemorrhage, retinal haemorrhage, and neurological symptoms. Then there is an increased risk of any infections when the white blood cells, which are the defense mechanism of the body, go on strike so that ordinary cold can become a hell of a problem and even lead to premature non existing of breath. There have also been descriptions of patients having blurred vision, fevers, weakness, excessive fatigue, mental fog, spleen and liver enlargement, enlargement of the lymph nodes, excessive sweating, loss of appetite, weight loss, rashes all over one´s body, swelling and pain in elbow, hands and feet, shingles (an acute, painful inflammation of the nerve body, with a skin eruption often forming a girdle around the middle of the body (a nasty little companion!)).

 

4. Chapter. Running as a method of therapy.

After the treatment ended, my blood was regularly tested and my values were monitored. The numbers did vary a little but mostly fairly stable. However, I always had a rather low blood level, hgb around 120-124 g/L. But it didnt really bother me unless I was always a little nervous when it came to the next blood test.

At the beginning of 2008, I wondered if I should try to start running again. The reason was initially twofold. On the one hand, I had added some weight in the chemotherapy in 2006 and I hadnt been able to get those kilos off me. On the other hand, I thought that if I would start running regularly, I might even be able myself to better monitor how my physical conditions would develop, remember how difficult it was to run uphill in 2004.

On my birthday on April 10, 2008, when I was 41, I took a day off in work, and went out and ran half the marathon distance, 21.1 km. It was nice weather that day, rather cold but calm, and I ran slowly so I always felt comfortable. Actually, I felt very well. So well that I decided to keep on running.

Now, almost 11 years later, I have run 38 marathons in 17 countries, 11 capitals and in 6 continents. A few ultra-runs (longer than marathons), the longest 100 km and many runs between the marathon distance and the half-marathon length, or a total of 32,597.3 km since I started running regularly in 2008. Ive used the runs as a way to explore the world and has finished the 6 big marathons (Tokyo, London, Berlin, Chicago, Boston and New York) and just has to finish the Antarctica to finish running a marathon on all of the seven continents.

But what really happened?

Should I say that I was lucky enough to have been diagnosed with blood cancer? I really dont know. Of course I dont know how my life would have evolved if I hadnt been diagnosed with WM. Maybe I would have run and maybe not. If I hadnt run, I would never have known what the runs can do. But I know I got WM and thats why I started running and thats why I know what the runs can do. Maybe I was lucky to get the WM?

In 2008, I gradually increased my exercises, and in the fall I got the idea that it might be fun to run a marathon. I had listened to the glory stories of my veteran running buddies about the different marathons they had run, and I found the challenge interesting. My exercises had gone well and I thought to myself that since they could run a marathon, I should be able to do that too. I ran my first marathon in Copenhagen in the spring of 2009. There I reached a time that surprised many people, but I ran the run in just over 3 hours and 9 minutes and managed to run what is called a negative split, or the second half a little faster than the first. I found the experience great. Marathon running is a very mind consuming sport because it is important not to run too fast and you need to listen carefully to your body and weigh the situation at all times. The energy must last the entire run and you also dont want to run too slowly so you cant get everything out of you. This is therefore a constant struggle of the mind, not less than the body. I also found it great to see all the people standing by the track encouraging the runners. It was amazing how many people seemed to be interested in the race and were involved by standing there and encouraging. But in the race itself, I was just thinking about the difference. I didnt doubt it would be fun to watch the race - but I was one of the participants myself and was running the race. I told my friend after the race that participating in the race was like participating in life itself. Of course it would be nice to be a watcher, but I didnt want to be a watcher in life - I wanted to participate in life.

This experience of my first marathon caused that I have made running my lifestyle. The running has helped me in so many ways. The running has helped me to consider myself a healthy person, who sometimes has to deal with disease or diseases, but not as a patient. Shortly after I started exercising regularly I heard two runners talking in a hot tub after one race. One told the other that one should always be in shape to run a marathon. I thought a lot about this phrase and found out that this was correct. If you are running anyway, is it not just as good to always be in shape to run a marathon? It can certainly vary how fast you can run depending on the shape any given time, but if you can run the marathon distance anyway then you should be in a reasonably good shape and not too much wrong with your health. So I decided with myself that I should always be in shape to run a marathon, which I find quite fun to do, and the plus is that it keeps track of your health.

One more plus of running is that on the run you often have a good time thinking and speculating about things. Time you might not otherwise give yourself. Because of my week immune system, I use treadmills in fitness centers a lot during winter times. Running on treadmills for over 3 hours can be quite challenging. But by having not to think about the race track or what is in front of you, gives you good time to think and speculate. Think about the future and how you think that you would respond to a particular situation.

Like others, I have had to deal with difficulties in life. The most difficult experience was when I lost my wife from cancer. She was diagnosed on June 21, 2013 and completed her chemo in the fall. The chemo was thought to be successful. But it didnt turn out that way. In February 2014, the cancer was back again and now it was incurable. She chose not to tell our closest friends and family about the situation and she did not want to discuss what was ahead. When she died on August 23, 2014, I had spent a lot of time alone with myself running and thinking about the future. Exercise, try to imagine how life would be after her death. At this time, I was given a book by Dalai Lama. There he discusses the value of thinking about what is inevitable, such as dead of loved ones. Though such thoughts may be difficult, it is even more difficult if we have not tried to imagine how life will be when the difficult experience happens. When it happened, I had at least realized how I wanted to try to live a new reality.

Another difficult experience that had a big impact on me was when I got atrial fibrillation in the spring of 2012. I couldnt run for months and even thought Id never be able to run again. At that time, I had run 5 marathons and one 100 km run. I was very focused on being able to run as fast as possible, and I was going to try to improve my times even further. I ran a marathon in Paris on April 10, 2011, at the age of 44 in the time 2:55:14 and in the summer of 2011 I ran 100 km at 8:52:40, which is still the third best time of an Icelander and is a respectable time internationally. I also intended to start competing in longer runs and was exploring some 100-mile races. I had never been in the same physical form as in the spring of 2012 when I felt the heavens collapsing on my head. Late in the fall, I finally got my heart “reset” in rhythm with electrical cardioversion. I almost immediately started exercising again. I regularly had problems with my heart rhythm and had several times to have electrical cardioversion again but usually it was enough to take an extra pill of my heart medicine to get back in rhythm.

A month after my wifes death in the fall of 2014, a so-called ablation was performed, which means that my heart rarely gets out of rhythm and I can run almost unhindered because of this. But now I run differently than before. Now I am not so occupied of running as fast as I can. Now the emphasis is on running marathons as often as possible and in as many places as possible. My cardiologist advised me not to run longer runs than marathons, but said nothing about how many marathons I could run! The year I turned 50 years old, 2017, I ran 10 marathons, but last year I had to limit them to 5 since I felt the disease, WM, had started to progress again. My last race last fall I consider as one of my best runs though the time was not that special or almost 3 hours and 50 minutes. This was a run in Lisbon in mid-October, which had some slopes that are particularly difficult for those with low blood volume. In my last blood test before the run, my hemoglobin was at 111 g/L so there was considerable uncertainty about how I would do in that run.

But my runs have given more. Being a part of a running group is extremely rewarding. Connect with people with the same interests and where everyone is on their own terms. The atmosphere is comfortable and relaxed and everyone encourages each other. In this group I found my current wife. It is wonderful to be able to share an interest with a spouse, and in recent years we have been diligent in collecting marathons in various parts of the world. If everything goes as planned in March, then I finish my 7th continent to run a marathon in and my wife her 6th. And the plan is then to finish her 7th continent in June in Madagascar. If she does, she will then have run 7 marathons in total and that in 7 continents. One marathon on each continent and well within 3 years. Thats something!

When all things are considered, maybe it isn’t the worst thing to have been diagnosed with WM? Although we who have WM are dealing with incurable cancer, in my mind it is better to deal with that fact and have good hope for many, many more years rather than having other type of incurable cancer that can kill you in several months.

I will end this section by quoting the lyrics from the music band American Authors in their song: I´m born to run. I love the lyrics and when I first heard the song it hit home instantly. And keep in mind that being young is a matter of mental state and to me the lyrics doesn’t mean to die at young age literally – but to live my life to the fullest, always.

 

Im born to run down rocky cliffs

Give me grace, bury my sins

Shattered glass and black holes

Cant hold me back from where I need to go

Yellow hills and valleys deep

I watch them move under my feet

Stranger things have come and gone

To see the world and take the throne

 

(Pre-Chorus] Dont hold back Oh, I wont hold back

 

[Chorus]

Im gonna live my life like Im gonna die young

Like its never enough, like Im born to run

Im gonna spend my time like tomorrow wont come

Do whatever I want like Im born to run

I wanna see Paris, I wanna see Tokyo

I wanna be careless even if I break my bones

Im gonna live my life like Im gonna die young

Like its never enough, like Im born to run

 

A winding road where strangers meet

To feel the love of a warm drink

My body moves, its speaking loud

Dont have to say what Im thinking now

 

[Pre-Chorus] Dont hold back Oh, I wont hold back

 

[Chorus]

Im gonna live my life like Im gonna die young

Like its never enough, like Im born to run

Im gonna spend my time like tomorrow wont come

Do whatever I want like Im born to run

I wanna see Paris, I wanna see Tokyo

I wanna be careless even if I break my bones

Im gonna live my life like Im gonna die young

Like its never enough, like Im born to run

 

[Bridge]

All these things Ive een and done

I live my life like Im born to run

All these things Ive seen and done

I live my life like Im born to run

(I was born, born, born, born, born to run I was born, born, born, born, born to run)

All these things Ive seen and done

I live my life like Im born to run

 

[Chorus]

Im gonna live my life like Im gonna die young

Like its never enough, like Im born to run

Im gonna spend my time like tomorrow wont come

Do whatever I want like Im born to run

I wanna see Paris, I wanna see Tokyo

I wanna be careless even if I break my bones

Im gonna live my life like Im gonna die young

Like its never enough, like Im born to run

 

Gunnar Ármannsson

Hgb 102 g/L

Platelets 73 g/L

IgM 26,0 g/L

 

II. Section: Life after second treatment.

To be written.

III. Section: Life after third treatment.

To be written.

IV. Section: Life after fourth treatment.

To be written.

V. Section. A man in his eighties.

To be written.

 

Epilogue:

 

The End………xx