Pat's Place: What Is It About The Moon?
There was a full moon Labor Day weekend. The sky was clear all three nights here in Florida. The moon’s light was filtered as it passed through the humid late summer’s air, forming a bright halo.
Walking beneath the full moon reminded me of the trying months following my multiple myeloma diagnosis.
Believe it or not, the moon played an important role in my initial recovery five years ago in Wisconsin. Even though I could barely walk, I will never forget stumbling down to the end of the block and back each night. As I walked, I gazed-up at the moon. It was my beacon — a symbol of hope.
As I slowly recovered from radiation and chemotherapy, a shattered vertebra, and a pair of broken ribs, I extended the length of my evening walks step by step. Eventually, I was able to make it up a steep hill nearby and walk a half mile along a dead-end road that overlooked our home.
It was isolated and quiet. No streetlights — and only an occasional set of headlights — to distract me from my upward gaze.
What is it about the moon? It always rose above the trees in a slightly different spot, revealing an intriguingly different size and shape. And the way the sun’s light reflected brightly across its surface inspired me to keep walking.
But that was a different moon than I see now. The cool, clear spring nights back in Wisconsin allowed the moon to shine crisp and bright. Now its summer light in Florida seems more diffuse and less clear; a metaphor for my life after a troubling myeloma relapse?
I still enjoy walking at night. Just me, my dog Finnegan, and the moon. Half way along my favorite route, I always pause to enjoy the image of my moon, sitting just above a large palm tree and reflecting off the water of a nearby lake.
It’s a breathtaking scene. Different, yet just as memorable as the Wisconsin moon I followed years before. I focus and try to sear the image of the night’s sky into my mind, hoping to hang onto it for when I might need inspiration down the road.
Five years after my diagnosis, the moon continues to be a beacon of hope for me and my new myeloma life.
Sick and elderly people often try to hold onto a meaningful activity or image. It might be working in the garden, watching a sunset, or gazing up at the moon.
My new myeloma life is hard. It’s difficult and painful getting out of bed in the morning. I need to take pain meds constantly throughout the day to help me deal with residual bone damage that doesn’t seem able to heal. And you can call it induction, consolidation, or maintenance therapy. But by any name, my ongoing chemotherapy has beaten me down.
But when I look up at the moon, none of that seems to matter. For a brief moment, I want to hang on and enjoy my moon for many nights and years to come.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Pat -- very poetic. the moon in many ways has always inspired people to look up. sad, too, though because it marks the passing of time. another month has gone by. when the moon is dark, we can know there will be that sliver again soon. the light to follow. today in pool class i saw the waning old half white moon in the morning sky behind tall palms. lovely. my friend. Suzanne
I know! The "passing of time?" If you can figure out a way to slow time down, let me know please! It's moving way to fast. Must be that I'm on "myeloma time!"
Wow! Thank you for this lovely post, Pat!
While in Junior High School in Hampton, VA, the local NASA facility (every kid should have one!), brought in Neil Armstrong to speak with select science students about his amazing adventure of going to and setting foot onto the Moon. While I didn't go into a science career, the mystery and allure of the Moon has captured my imagination ever since.
Sitting out on a clear night and gazing through a telescope at the lunar surface helps to remind me just how immense the universe is. Some folks feel insignificant when they do this; I feel an awe of and connection to all of creation.
Conquering myeloma has obvious, interesting parallels with going to the Moon. Brilliant men and women used their considerable talents to figure out a way to send a band of a few brave astronauts to the lunar plains - and get them safely back home! Sadly, courageous men lost their lives in the space race. Myeloma has its daunting challenges, too, but maybe someday we will land on a solution for our troubles.
Since Neil Armstrong's recent passing I have thought about the Moon frequently. Thanks for making a beautiful, powerful connection from my beloved Moon to my not-so-beloved myeloma. It will fill my thoughts as I move on.
Hang tough, my fellow Hemo-naut and give Finnegan a scratch behind the ears for me. Keep looking up! Sean
Thanks for the good thoughts about our wonderful companion in the solar system, our moon. Where would we be without the tides, the phases of the moon and also the way it affects the living beings on earth. We also watched it last month, and the month before that up north in the Yukon...and did you notice the meteor showers on Aug. 18? Even though we have 'light pollution' in our city, we were able to spot some meteors from the Perseids that occur every year. Looking at the night sky increases our sense of wonder of the world, and helps to put things in perspective sometimes too. Best wishes to you and Pattie, Pat! (and Finnegan too)
I didn't think to tie-in Neil Armstrong's passing. Great to hear from you, Sean!
And thanks, Nancy! You have "light pollution," we have a humid haze. The moon is beautiful nonetheless...
Pat, I know how you feel. I too have gone through the gamet of MM problems and treatment side effects. I have a tale that is similar to your "Moon" story. I hope it helps you as yours help me.
The Bird With No Tail
My name is George Jurak. I was diagnosed with Multiple Myeloma in January 2011. Since then, I have had induction therapy of Bortezomib (Velcade) and Dexamethasone. The Velcade gave me Grade 4 Peripheral Neuropathy, so I have pain in my legs and feet with requires me to take Hydromorphone (Dilaudid) daily. Also, I had 4 weeks of radiation. Later, I was given Lenalidamide (Revlimid) to maintain my low M-Spike. Then I went to Nashville for a Autologous Stem Cell Transplant (ASCT). After returning home from my ASCT, I was so fatigued and out of touch with the world, I didn’t know what I was going to do.
Every day I sat in my carport and watched the birds, squirrels and other wildlife as they went about their business.
One day as the birds arrived, as they do every day, to eat the bugs hidden within the grasses, I noticed there was one bird that did not have a tail. I never saw a bird without a tail before. All the other, same species bird, had their tails. So I watched The Bird With No Tail, day after day, and he would do everything the other birds were doing, even flying away to my astonishment. I wondered, how can this bird fly with no tail? This went on for weeks and weeks.
I would show my neighbors and friends this Bird With No Tail.
As I sat out there each day feeling so bad, fatigued and in pain (as Winston Churchhill once said, “The zest is diminished”), it dawned on me that this bird was sent to me to show me that even though I am not the same as other people or as I was, I Can Still Fly!!
At that moment, tears ran down my face and I realized that I must carry on and persevere. So I decided to rise each morning at 6:30 AM. Also, to help my friend part-time at his business, and take care of all the responsibilities a single person has with housework, watering of outside plants, etc. and even exercise. Oh yeah, I forgot to mention, with the help of Joanie Borbely of the IMF, I am starting a Support Group in Polk County, Florida.
Those of you out there who have gone through all the aforementioned treatments, know what I mean, when I say, how bad the fatigue and disconnection with ones’ previous self is. It is hard to explain to our family and friends what the feelings and mental differences are. I can’t explain them accurately myself. All I know is that I am not the same.
The Bird With No Tail has taught me a lesson in life and I hope that sharing this event with you has helped you too see that You Can Still Fly!!
Pat, i'm sure you know of what I speak. Every person has their way(s) of dealing with this nasty cancer, but deal with it we must because the alternative is unacceptable. God Bless, George
I helped start a support group here, too. Doesn't it make you feel better helping others like us? Thanks for sharing your story, George!
Yes it does, Pat. I remember reading somewhere that you, also, are a Floridian. I live in the Winter Haven area. Maybe one day we will meet. Maybe one day you can be a speaker at one of my meetings, if you would? I have added you to my prayers and and I hope your pain abates in the near future. God Bless.
I would love to meet you someday, George! I'm over in Weeki Wachee, just north of Tampa. And I would be more than happy to travel to Winter Haven! I might even be able to help get a few more butts in the seats by speaking at one of your first meetings. My email address is on the Beacon "About Us" page, http://www.myelomabeacon.com/about-us/
That is just wonderful, Pat. My first meeting is Oct 11th and every 2nd Thursday of the month, thereafter, from 4-6 PM. Let me get myself organized and get everything rolling before you come...Sometime next year.
You are closer to my treatment center then I am. I go to the Tampa VA Hospital. They are great people and my Oncologists are from Moffitt.
I will stay in touch. Thanks again,
George
Yep. VA is just around the corner from Moffitt...
Thanks for reading, George! My email on the About Us page is correct. I received over 200 emails today, so if that doesn't work I'm afraid the problem is at your end.
Beautiful, just beautiful...the moon also is one of my beacons. It shines through my large bedroom window where I have spent the majority of the last two years. It briefly rises above the evergreen trees, moving slowly north and south in its rising point. And briefly blesses my room with second sunlight! The sun does the same in the morning, and at one point my room, a quite small bedroom, is literally glowing! Then the sun passes above, as the moon does, and I attempt to start my day...or my night. Thank you Pat, for such a lyrical and poetic column, and thank you to the other comments and stories too. I am so grateful for others and what they give to me! May we all continue to hang in there and stumble to the corner if that's all we can currently do!
Jan
I just returned from a late evening walk. Love watching that moon! Thanks so much, Jan!
I hope doctors will make everything for your situation. And what about new drugs for you ( pomalidomide, kiprolis,elotuzumab, zolinza,and, for bone pain, denosumab )?. I'm a five years myeloma patient too, and I want that all the people with emathologic malignancies get every possibilities to fight the illness. In China as as well as in Africa, in Europe as well as in America!
Pat, I admire your strenght and courage! So, carry on my friend, and keep fighting!
Rob
Pat, the reason your website and your email from me would not go is that GoDaddy was down yesterday and a bunch of sites did not work. The website now appears and I assume the email works now, too.
I didn't have your email to respond, George. But yes, GoDaddy hosts my two main blogs and email. And I did get the normal amount of email. Technology: Can't live with it, can't live without it!
Pat, your comments hit home with me. I'm a 7 year MM patient and I always
talk to my grandkids about Pop Pop's moon. I hope when I'm gone they'll remember Pop.
Liked your comment about difficulty in walking when you were in the early stages of your MM journey. When I was at that phase I tried walking down to the mailbox to get the mail. That was my first big step without any assistance. Got to the mailbox and couldn't breath or walk. Fast forward to now and I'm walking, golfing, and maintaining a positive attitude.
My numbers are starting to move in the wrong direction now but I'm ready for a new protocol that will get back on track.
Getting out to the mailbox was my first big accomplishment, too! Good luck, Pat... You've been at this longer than I have!
I was so happy to find this web site. It's really the only support-type group I've found...or the best one, at least. MM is so rare that most of the time it feels like you're on your own.
I was 73 when I was diagnosed with MGUS. Funny thing how that was discovered. A few months before I asked the doctor about it, I had discovered a "dent" in my scalp, about the size of a dime. My Dr., after a good deal of thought, decided I should have a skull x-ray. It showed multiple lesions in my scalp. After several more tests, I was diagnosed with MGUS . Was tested over the next year and ultimately progressed to smoldering myeloma. One year later progressed to full-blown myeloma. Was treated with Revlamed for about 4-6 weeks, developed multiple blood clots in my lungs and was hospitalized for several days. Then on to Velcade. A few weeks of that and I had peripheral neuropathy. I never knew it could be so painful. A couple months of Cymbalta took care of most of the pain,thank God. Next we tried Velcade and dex. at half the regular dose, but the neuropathy came back with a vengeance. So that's where I am now. Just got the name of Kiprolis,which I will pass on to my doctor this Friday. I'm hoping and praying that we can find something thar my system can tollerate. In the meantime,I'm thankful to have had almost a year off all meds. The only trouble has been my gait. My feet don't know where they're going. Ha ha. Anyway, I hesitate to go walking alone because I'm afraid I'll fall, so I'm not getting much exercise .
I've been told that you can't have a bone marrow transplant if you're over 70 years old. Does anybody know if that's true?
Pat, I loved your moon story. I will always think of it when I look up. Thanks to all of you for sharing your MM stories. Somehow, I suddenly feel less alone.
Did you try Velcade sub-q, Doris? Helped my PN a lot! But it doesn't make a difference for everyone. Sort of a metaphor for our cancer. Seems to affect all of us in different ways--and we all seem to react differently to the meds, too! And yes, many people undergo auto stem cell transplants (using one's own cells) in their 70's. Transplant centers often have guidelines, but most allow exceptions if the doctor feels its OK. Some say 70. Others 75 or even 80 years old. Good luck to you! Thanks for reading and glad that we can help!
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