Northern Lights: Spring Break In Reykjavik
As I mentioned in one of my previous columns, my husband and I like to travel, and we have continued to do so, at different levels, despite my multiple myeloma diagnosis.
As you can imagine, travel was easier when I was in remission. However, we nevertheless traveled when I relapsed and started treatment with Revlimid (lenalidomide) and dexamethasone (Decadron) in the fall of 2014. I just took extra precautions when we went to Hawaii a couple of months later.
I am still on medication and I still go places. In March, we took a wonderful trip to Iceland. It was kind of a spring break for us.
Although you may consider Iceland to be on the far end of the other side of the spectrum compared to Hawaii, there were similarities in the experiences I had traveling to the two destinations. Of course, there were also major differences, which I’m going to share below.
As before, my most important items to pack were my passport, trip information, travel insurance phone numbers in case of a medical emergency, and my medications. I put the blister pack of Revlimid, the low-dose aspirin, and dexamethasone in my carry-on so that I didn’t have to skip any treatments in case my luggage was lost. (I did run out of low-dose aspirin in Iceland and was surprised to find that the low-dose tablets there are only 75 mg, not 81 mg).
I try to observe the weight lifting restrictions I’ve been put on since my multiple myeloma diagnosis (I’m not supposed to lift more than 10 to 20 pounds). However, my suitcase once again ended up weighing about 35 pounds. It is on wheels, but it is awkward to take it anywhere without actually lifting it, or needing help with it. I obviously still need to work on packing more lightly.
We once again were lucky to catch a direct flight, which we very much appreciate because it cuts down on the amount of time spent in airports and sitting in a plane. We took an aisle and a middle seat so that it would be easier to get up and move around if need be to prevent blood clots, or to use the plane’s bathrooms.
For our stay in Reykjavik, we booked a hotel that would make it easy for me to rest in case I got sick, which is always a concern of mine. Being on a high-dose of Revlimid (25 mg) makes me immunocompromised towards the end of the 21-day treatment cycle. I tend to catch colds more easily during that time; in fact, I had several of them over the winter. Sometimes I have gastrointestinal problems, too.
I was so hoping to be able to travel without getting sick and, fortunately, everything went well. I have to admit that I am a little jumpy about avoiding infections. Once we actually got up and changed tables in a restaurant because someone next to us appeared to be really sick and was coughing and sneezing a lot. The person might have thought we were being rude, but I know that I have to look after myself.
We planned on doing a lot of walking during this trip. Because I have neuropathy in my feet, I bought a pair of light-weight hikers with a Goretex exterior. The shoes were so comfortable that I was able to walk five miles on some days, which is a lot for me. We also took hiking poles along so that we could comfortably walk on ice, but we did not need them. The weather was mild when we were there; it reminded me of coastal Vancouver’s winter weather.
We got a bus pass from the hotel to use while exploring Reykjavik, which was really helpful because there were times when I felt I just could not walk another step.
I found that any aches and pains I had from doing a lot of walking were really soothed by soaking in the geothermal hot springs pool we went to see, and in the hotel’s spa pool. I still sometimes have problems that way in the areas of my back where there were fractures from my multiple myeloma.
Just as in Hawaii, the food in Iceland is in line with a healthy diet, but in a different way. There is lots of fish, fresh vegetables grown in greenhouses, and great bread, made of different grains such as rye and spelt. They also make a thick, flavored yogurt called skyr, which is very tasty. This was inspiring for us as we try to eat very healthy food at home as well.
Given the title of my column, I have to mention that we took a nighttime boat ride out on the harbor in search of northern lights. Unfortunately, we did not see them because it was cloudy that night. However, we were lucky to see them from the plane on the way there, at 35,000 feet altitude. As this happened to be on my 65th birthday, I felt really sort of blessed by the heavens!
All in all, we had a wonderful time in Iceland. I am particularly grateful that my multiple myeloma and my treatments did not significantly impact my experience. It gives me hope that I will be able to continue traveling despite my myeloma.
Have you had some good travels lately, and how did you cope with your health issues at that time?
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The quotation for this month is from by Halldór Kiljan Laxness (1902 – 1998), an Icelandic author and Nobel laureate, who said: "His mother taught him to sing. And when he had grown up and had listened to the world's song, he felt that there could be no greater happiness than to return to her song. In her song dwelt the most precious and most incomprehensible dreams of mankind."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Hello Nancy.
Thanks for your contributions to The Beacon. I always enjoy reading your column and Beacon contributions. Since my autologous stem cell transplant (ASCT), I too am a germaphobe and take all cautions to avoid infection. We never go anywhere without germicidal wipes which I use regularly on restaurant tabletops, airplanes, shopping carts etc. Your trip to Iceland sounds wonderful, but may I suggest that the use of hot tubs, spas, and even hot springs are high in bacteria and fungal organisms and may put multiple myeloma patients at risk, especially if you have any open skin ... even minor abrasions. I even avoid public swimming pools. Chemicals used to kill these organisms are not always maintained at an effective level and the bacterial load from heavy use with children (some in diapers) puts us at risk. It pays to be vigilant.
Wishing you all the best.
Thanks. Dano. I have been cautious too, especially about going in hot tubs, since I worry about catching infections that way. I think that showering after being in the water is a good idea. At the spa we went to in Reykjavik, 6 million litres of geothermal-heated seawater are renewed every 40 hours. Apparently, the usual bacteria do not thrive there. Also, everyone had to shower before going into the pool. So we took that information at face value and fortunately there was no harm done.
It is so inspiring to hear that traveling can be done safely with the extra precautions and considerations. I'm most interested in the hikers you wore comfortably for 5 miles! Could you share the make and style? I'm trying to step up my game a bit and get out walking more. Thanks for your articles.
Nancy,
Iceland sounds wonderful, as does the food. I too avoid people with colds, or even if I hear them coughing I move away. Some people are just not aware to NOT go out if they're sick. I think the thermal springs were probably safe from germs. I know I would avoid hotel pools, but not a hot spring.
You mentioned neuropathy in your feet and buying certain shoes that helped. I'm not sure (with my Velcade) treatments if I'm getting some neuropathy. I have some pain in my feet and legs, a little numbness (not a lot). What are your symptoms? Do you take something for the neuropathy?
Diane, I think that shoes just depend so much on what fits your feet comfortably. For example, I have been using 'New Balance' running shoes for decades (not that I run anymore, just for walking). The hikers are 'Merrell' brand, and I also use the moccasin style in that brand for winter walking a lot. The hikers lace up though, so I think that gives better foot support than the mocs. The Goretex should be good in rainy weather, but I haven't encountered that yet while wearing them. But really, if you get good advice at an athletic shoe store, I think that is the best to do. They can tell if you pronate, or if the toe box fits and other technical details like that.
Christina, I did get the neuropathy from the Velcade in 2009, and the Revlimid seems to have intensified it a bit, but it is just in the front part of my feet; it is sort of a numbness there. At the time of the Velcade, my oncologist kept asking me about the neuropathy, and I think that is why I got stopped after 4 cycles of the treatment. Nowadays, there is subcutaneous Velcade available, which sounds as if it would not cause as much neuropathy. No, I don't take any treatments for it, although I know that others do. It is not painful really, but after standing or walking for long periods, I really feel it, and have to sit down.
As a photographer, Iceland has been on my "must visit" list for a long time. After my diagnosis and now plans for my stem cell transplant in June, Iceland has become my wife's and my goal. When I'm recovered and ready to go again, Iceland is our target travel destination. So happy to hear you had a good visit and the myeloma did not stop you from enjoying this beautiful land.
Nancy, I always look forward to reading your column. I am so glad you had a great trip to Iceland. I admire how you plan to face the risk for infection and the side effects of Revlimid. I love the part that you got to see the Northern Lights in an unexpected way and on your special birthday. Hooray.
We are leaving on a road trip, with camping so I am preparing for the fight against infection, while enjoying the moment, even getting dirty.
I like that you are a problem solver.
Maureen
Nancy - You are blessed, and you bless us with your column! Thank you so much for this particular one. We are going to take our first trip back to Europe after my husband's diagnosis of multiple myeloma in July 2014. As I have mentioned before, you both share many similarities in your treatments and adverse side effects. Like you, when we fly, we try to get direct flights and we try to get an aisle seat for the same reasons. We also often select airlines based on the types of aircraft that they fly. For example, Virgin Atlantic flies Boeing 747's overseas and if you book far in advance, you can get good business seats upstairs that are are just two side-by-side. Also, Hawaiian Airlines flies the Airbus A330 that also has just two seats along the sides.
We also worry about catching infections while traveling. At home we have been living a somewhat restricted life since my husband's stem cell transplant on August 31, 2015. The few times we have let our guard down he has come down with an infection, so we are quite vigilant. Like you, we have changed tables at a restaurant when someone close by has coughed or sneezed repeatedly. This can be pretty distressing on an airplane, so we always wear masks on flights to our cancer center. We are hoping to not have to wear masks on our flight to London next month.
Again, thank you for sharing your travel experiences and giving us inspiration to continue to travel despite the restrictions that come with living with multiple myeloma.
What a fabulous vacation! I'm so glad you were able to go. I am like you, have had back involvement and need to be very careful of lifting and sitting, etc. My husband and I were able to travel to Italy 5 years ago for our 20th wedding anniversary, and I was concerned about the long flight from Charlotte to Munich and then on to Rome. Fortunately, we flew Lufthansa, which had a wonderful "downstairs," housing lavatories and a drink bar. It really helped with stretching my legs. I think with careful planning and being smart about how we guard against germs, we can have wonderful getaways – kind of like "regular" people.
Hi Nancy,
That's great! I'm so glad you had a fun and healthy trip. One of my good friends and his wife are heading to Iceland Saturday. It sounds like a great place to visit.
My most recent (flying) trip was going to Phoenix in March for several days to watch some spring training baseball games, meeting my (adult) son there, who flew in from Washington, DC, where he lives. We had a lot of fun!
Like you, I make sure to carry meds in carry-on luggage. But I try to avoid checking luggage anyway.
Thanks for another great column, and best wishes to you!
Mike
Thanks for the comments!
MarkW, You would find a lot of beautiful landscape to photograph in Iceland. For the most part, it is quite a natural landscape, since most of the population lives in Reykjavik. Being so far north, and an island formed by lava, creates an interesting contrast between lava and tundra; lots of lichen and also the northern lights if you can get a clear night to view them. We would like to go back sometime and see the cliffs at Vik where many seabirds nest, including puffins. There are also whale watching tours available. I really liked the fact that the northern landscape was accessible to tourists there. At that high latitude, we were almost at the Arctic Circle. In Canada, that latitude would put you at the Arctic Islands, way north even of the Mackenzie River delta. I was so pleased to see a taxidermic skin of a muskox at the National Museum, and a painting of a prairie crocus in an art gallery. My father and brother worked for many years in the north, and I have heard a lot about that, but the farthest north we had every been before was to Whitehorse, Yukon.
Maureen, A road trip is better for avoiding infections such as one can get by sitting on planes and breathing the circulated air! I think that in Colorado there must be a lot to see also. When we saw the geysers there it reminded us that we have not yet been to Yellowstone, Wyoming, where I think the tallest geysers in the world are located. That would be a good road trip to take sometime.
PattyB, Thanks for the information about the airlines and best of luck to you and your husband. Have a nice trip to London.
Susan, Let's be like 'regular' people as much as possible! Thanks for the info about airlines also. I am usually on our Canadian airlines, since I have air points on them, but for the Iceland trip went Iceland Air, out of Edmonton, only a 3-hour drive to the north of here. We were surprised to find that Reykjavik was only a 6 hour flight from there, and couldn't resist trying that. It was a six hour time zone change though!
Mike B, Nice to hear you had a good 'spring break' too, flying to Phoenix to meet your son and watch spring training games. On the luggage issue, I don't mind checking one piece of luggage, since if you try to lift a heavy carry-on bag into the overhead luggage bin, that can be a problem too! When travelling alone, I have had to ask for help with that. Yikes! I never realized that just taking luggage on airplanes would take so much planning, before the myeloma diagnosis.
Nancy
If you type in "neuropathy" in the Myeloma Beacon search box, you will find a recommendation for taking vitamin B6 and lipoic acid. This worked fine for me during the Velcade infusions and also the 25 mg Revlimid. The Beacon article recommends doses for both, but I found I had to increase above their suggestion. Here is the link:
http://www.myelomabeacon.com/news/2010/09/02/guide-to-nutrition-in-multiple-myeloma-part-2-supplements/
There is a caution that lipoic acid may reduce the effectiveness of Velcade, which did not happen with me. Velcade worked fine, and in fact I went 18 months totally drug free after Velcade treatment. That was great. I have been on Revlimid for about 3 years, with almost no neuropathy, so I credit the B6 and lipoic acid. I use R-lipoic acid instead of the alpha lipoic, as I find it more effective for me. Lipoic acid molecules come in left handed and right handed molecules, my system likes the right handed molecules.
Eric, I am glad to hear that you have not had neuropathy from Velcade infusions, or from Revlimid! I would have to check with my oncologist about taking any supplements, because the treatments I am on now are working really well and I don't want to disrupt that at all. My neuropathy is not at all severe, although a constant with me, and is not painful. I do know that neuropathy can be really severe though, and cause pain too, so hopefully this information you posted will be helpful to others. I take a multivitamin and also Vit. D tablets though.
It sounds like a wonderful vacation! Thanks for sharing such a good example of working myeloma into the joys of normal life.
Thanks Tabitha! It was a really interesting vacation!