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Myeloma Caregiver Wife Blog: Diving into Love with Eyes Wide Open

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"It's a journey I would have never chosen."

For most of us, that is true. It's true for me. It's true even though, frankly, some of the gifts from being on this path have been huge. I wanted to write a bit about some people I have met in my six-plus-year odyssey as a myeloma caregiver wife, who DID choose this journey. 

My husband, Alan, was diagnosed in September 2005. I jumped on the research and searched for resources quickly. The IMF was one of those resources. I remember ordering the large bag of pamphlets about multiple myeloma, and the arrival of the card for a Patient and Family Seminar in San Francisco. That seminar happened to hit on the day of my 50th birthday. We traveled from Portland to San Francisco, and were like sponges absorbing information. I remember the rush of calm when a patient panel included a 28-year survivor. 

At a cocktail party that evening my extremely introverted husband whispered to me "Don't make eye contact!" He was shy in a room full of strangers. But Alan married an extreme extrovert, so of course I made eye contact, and invited a couple looking for a place to sit to join us. 

It was Ms. J and Mr. J from Medford. They were delightful. Alan was immediately fascinated with Mr. J's extensive notebook of years of lab results. They both "engineer" types, and Alan started keeping similar spreadsheets of his lab results when we returned to Portland.   

I've held onto this couple's story for years.  They were several years older than us and had been dating for a long time before Ms. J said "yes" to a marriage proposal. The wedding was just weeks away when the myeloma diagnosis came. There was a lot of pressure from her family to call it off and to avoid a marriage as a caregiver to a myeloma patient. But she didn't back out. 

How hard it must have been to choose to say "yes," not knowing what the future might be, and with well-meaning family trying to dissuade you. By the time Alan and I met them, things had developed into a pretty nice routine of golf and clinic appointments, and the marriage was a treasure to both. 

We threw ourselves into our local myeloma community. Because of this, when friends of friends had a family member who had been diagnosed with myeloma, we often found ourselves connected with them to "show them the ropes." This was how I met Ms. C, who was gathering information after her fianc� was diagnosed with myeloma. She was in her 40s and finishing a medical program, and he was approaching 50. She wanted to talk to someone about what it was like to marry someone with a myeloma diagnosis.  I shared what I could about choices and obstacles.  

Ms. C also chose to be the wife of a myeloma patient.  In the brief window before her new husband began Revlimid treatment, she became pregnant. The couple's little son has the widest smile I have ever seen on any human being, and is the center of their universe.  

Two weeks ago, I was at the IMF's patient and family seminar in Seattle, and met Ms. S, whose boyfriend of almost five years was recently diagnosed. She is selling her house, and he is packing up his, to move to the East Coast together, where they have decided his treatment will be handled. Her sweetheart asked Ms. S not to share his diagnosis with friends and family, partially, I think, out of worry over the judgments they might make on her choosing to accompany him on his challenging future. But she is smart, loves him, and is choosing with her eyes open. 

I hope all three of these caregivers find gifts along the way that exceed the challenge of choosing to accompany someone with myeloma on this uncertain path. If your story is similar, you, too, have my extra admiration.


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34 Comments

Beautifully written, Kim! A genuine and touching window into the difficult and rewarding choices made by patients and their loved ones. I'm def going to tweet this!

KIM,WONDERFUL BLOG-YOU ARE A JOYOUS PERSON. MY HUSBAND AND I STARTED THIS JOURNEY IN SEPTEMBER 2011. WE HAVE HAD 2 BAD HOSPITAL VISITS RESULTING IN A VERTEBRPLASTY AND PNUEMONIA. WE FINALLY WERE ABLE TO START VALCADE,REVLIMED AND PREDNISONE. WE HAVE DONE 4 CYCLES AND HAVE GONE TO SEE AN ONCOLOGIST ABOUT STEM CELL. THIS HAS BECOME VERY STRESSFUL AS WE HAVE TO DECIDE IF WE WANT TO DO THIS. I HAVE TOLD MY HUSBAND I WILL STAND BY HIS DECISION WHATEVER IT IS.IT IS GREAT TO READ OTHER PEOPLE'S EXPERIANCES.

Inspiring blog kim.I am also a wife of myeloma patient who himself is an orthopaedician.I have joined this journey in jan 2012 when he was diagnosed as MM.I also took the path of searching the net where IMF gave me a lot of information regarding treatment and care.My husband has finished 3 cycles of valcade with dexa and he is showing good resonse.As I am not so fortunate to attend the seminars as I live in India but I am able to gather information on net.I dont know what lies in the future but I am sure that I will be the care giver all my life to my husband as god has given us,the human beings a power to think and share and care.If we are able to take care of any sick person then the life is worth while....Thanks ...............Nancy from INDIA

Kim, congratulations on the new blog and kudos to you for continuing to give so generously to others of your experience, your research, your knowledge, your compassion, your time. You've already helped so many along this myeloma path and you are continuing to give such an enormous gift. Thank you!

Kim,
Wonderful blog for caregivers. You are who has helped me through this journey. The support of others who understand is so important. I think we all pray for a cure for this very sad disease.
I hope everyone stays positive, and keeps up the support.
Kathleen from Az.

I have been with my partner for 25+ years. His MM diagnosis in 08/10 was a shocking suprise. We aren't married but I promised him that I wasn't going anywhere just because he was sick. I have been by his side through the year it took to get him into remission, the collection of stem cells and finally the transplant. Today (4/20/12) is the 6 month anniversary of his transplant and he is doing great! Just this week he acknowledged that without my support, he probably wouldn't have even begun treatment, let alone have a transplant. Karen Philadelphia PA

When we chose to marry, I accepted the journey unconditionally, wherever it may lead. Twenty years later when my wife was diagnosed with plasmacytoma, on Valentines Day of all days, it never crossed my mind to not be there with her or for her up to the moment of her passing.

We both did better with more information and the IMF was a welcome valuable resource. What was most difficult for me was not being able to fix the disease. We tried an "alternative" treatment after Mayo discharged her as a patient with but 8 weeks to live. It showed rapid results in lowering her free light chain count but wasn't started soon enough to reverse the disease. It did eliminate many surface lesions that were painful so that was some relief and that gave us hope.

It's my prayer that caregivers find the strength to be the source of love, support and comfort that their patient needs through the course of their lives come what may. There may be no more important role in your life than that. Live it well!

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Beautifully written with grace and compassion, Kim. Congratulations on your blog. I look forward to hearing your voice of wisdom and understanding. I consider you one of my fellow travelers on this myeloma journey. Bless you for all that you do. Healing hugs, Rhonda

Thanks, Kim, for this posting and for future ones. Caregiver support is a critical piece of the myeloma picture, one that can get ignored because of the sense of enormity and occasional crisis that tends to keep the focus on the person who has myeloma.

In reality, when there's a marriage or partnership, both people have myeloma. Your blogging through the IMF will be a boon to caregivers.

Since I am a personal friend of yours, I can vouch for the huge amount of effort and expertise you have amassed in your role.

I'll be staying tuned.

David in Portland

Wonderfully, inspiring blog. Caregiving is such a challenge.

Your experience and wisdom and knowledge is an invaluable gift. Your efforts in this arena just continue to awe and inspire.

Hi Kim,

Way to go - you write well and from the heart!

Tom Blakney

You write from the heart about this journey many of us are on. It has been nearly four years since my husband's MM diagnosis, and the importance of being a caregiver is never far from my thoughts. Each day is a gift that I open with joy and anticipation - one more day to share with my Sweetheart!

Bless you, Kim, for your generous heart and articulate words!

Hello. I appreciate your Blog as well. My husband & I were engaged 11/20/09. We planned to be married on 8/6/10. My husband (boyfriend at the time), had been dealing with an undiagnosed condition for some time and was misdiagnosed for about 1 year before he was diagnosed with MM. One thing we had both worried about for our wedding was that we needed to figure out what was wrong with him, so that he would feel better by the time our wedding rolled around. He went to many specialists, all not knowing what was wrong, but every one seemingly not believing it was a cancer. Finally, on 3/30/10, about four months after we were engaged, my fianc� was diagnosed with MM while he was in the ICU with acute kidney failure. He had lost over 50lbs, became so weak, and suffered so much throughout his illness. The oncologists decided that they would treat him with Valcade and prepare him for a stem cell transplant. We decided to move our wedding up to 6/12/10. We cancelled our 8/6/10 reception hall because he would never have the energy for a big wedding and he was supposed to be going through a stem cell transplant around then. We made a plan to have the wedding at our church, as planned, and would hold a smaller and shorter reception immediately following the wedding ceremony. I used an Evite, instead of paper invitations, had a great restaurant cater the event, my friends rallied around us and decorated the venue, and we set up chairs so that we could both be seated during the ceremony because he was not well enough to stand for a whole wedding ceremony. My husband was in the hospital the week before our wedding. The Doctor�s knew we were planning to marry the upcoming weekend. Our pastor came to visit us in the hospital and said we could always get married in the hospital; we didn�t really want that. Fortunately my fianc� was out of the hospital in time to get married in our church. It was hard for him to be there because he was so weak, but it was the most beautiful wedding!
He returned to the hospital the following week. His body was not responding to treatment and he was on kidney dialysis. With lots of fear and hope, we found out about the UAMS MIRT clinic and arrived there, married, at the end of July. Believing we would be there for a week for a second opinion, we remained there until mid-November. He went through heavy dose chemotherapy and two outpatient stem cell transplants. He was told that he was off dialysis and in complete remission on All Saints Day Nov 1, 2010! That was the best news we could have ever received. We spent more of our first months of marriage in Little Rock, AR, than in our own home town.
Without our faith and the love of one another and family and friends, we never would have gotten through that. I remember my husband saying, �You don�t have to marry me.� That never even crossed my mind. I would marry him, I said �yes� to being engaged because I loved him, and cancer was not going to change that. I believe that our love has only grown because we had to go through so much in our first year of marriage and that continues. My husband remains in complete remission and we pray every day for continued healing for him and all those who suffer.
I could go on and on about our story, but I will leave it there for now.
He just read this, and he says hello!

I'm a 58 year old widow (from my second husband) that was dx. with MM in 8/2011. Love does indeed take on surprising forms and figures. In short, my ex-husband (1st husband) is my primary caregiver.

I think back on the roads of pleasure and pain that we travelled and I am shocked that of all people in this world, my ex spouse (divorced in 1996) would volunteer to be my primary caregiver. He spends his time accompanying me to appointments, holding my hands through bone marrow transplants, and dealing with my dexamethasone rollercoaster moods.

At first I tried to put a label on our relationship and I was hoping for romance and lovemaking. What I discovered on this MM journey with my ex as my primary caregiver was quite different. Instead, we learned more about one another's personality, character and idiosyncricies. We've argued and settled on agreeing to disagree. Once all that was behind us, we realized we were together again to support and enhance each other's lives.

Don't get me wrong, I would have enjoyed having romance in the relationship, but I am so fortunate to have a partner that is satisfied in just being 'my primary caregiver' and he is very supportive in that role. I am committed to being the same for him. And the extra benefit in all this has been the opportunity to forgive and heal from past pains and hurts. There aren't many ex-es that can accomplish that.

Kim,

Thank you, thank you for this moving, articulate and loving account of caregiving. Al was so fortunate to be married to you and have you by his side during your marriage and his treatment.

The comments you've received so far show that you have touched a nerve. Whether someone lives in India or Portland, Oregon we can all agree on the importance of caregiving, of love and commitment.

I will look forward to reading your future posts, you have affirmed what's important in life.

With my gratitude and admiration
Sue

Thank you for sharing. We are just coming home from visiting Dr Ken Anderson at Dana Farber today. It has been a roller coaster ride since my boyfriend/partner of 16 years was diagnosed with MM just a mere 2 months ago. He has responded so well to the Valcade, it's quite amazing.
I am so happy to see a place where caregivers can give voice to their thoughts and concerns. I wish you well with your blog, and to everyone out there dealing with MM. Thanks for being here.

Thank you Kim for this wonderful "peak" into the eyes of caregivers. It makes me appreciate even more the joyful moments my husband and I can continue to celebrate each day since his diagnosis of MM three years ago. It was a journey neither of us expected, but we thank God for our 43 years together and each day we have moving forward.

Wonderful stories, thank you Kim for sharing.

I met my boyfriend on January 10th of this year (2012). We bought a boat and are living aboard together since March 5th and he was diagnosed with MM on April 24th. He started treatment April 28th. We are both still in a world wind of confusion and disbelief but I am certainly not going anywhere. We are both in our mid 50's and searched our whole lives for each other. We will get through this the best we can and enjoy every day we have. Some have told me that I should just get up and run since we have known each other such a short time. I could never do that, in sickness or in health we are soul mates and not even MM can change that.

This is only the beginning of our story.

Kim, Very sorry, my earlier post I mistakenly put gmail.com address rather than YMAIL.com... It is the Ymail address that is correct.

Kris

EJ and I married a month ago on March 31 with in front of 100 of our family and friends. EJ was diagnosed with MM in September, 2010. Since then he's been through his induction and stem cell transplant - both of which he handled well and achieved CR. We spent our honeymoon in Barcelona and France, where he ran me ragged! I don't know what life holds for us, but I can't imagine going through it without him. I hope and pray that he stays well enough for science to catch up and provide a cure.

Lyn

Kim what a blessing to have you share as a caregiver on your MM journey's. Thank you and to those who share their journey's God bless all of you.
My husband of soon to be 50 years began the jouney into M,M world 9/29/12 Each day that has passed his pain only worsens.Wendell now on his 8th day of Revlimid and "dex" as many have. His present state of what I call "narcotic coma".Something tells me you have been where I and my husband are now. A first for us today,will be a Home Health Care nurse to do his first blood draw on " Rev" that Dr wants done weekly.
Im so thankfull that Iv found such a organization and support group who share with me and Wendell. I now join with each of you this journey and I need all the support,stories I can read. Like many of you Im reading all I can to help me learn more of this MM path we travel. I'll share what I can to support you all,when I can. I havent found a support group in Norman,OK yet. If you know of one please let us know. I pray our Heavenly Fathers mercies upon you,us all.
Janice

My mother just lost her battle with this disease.

YouTube Tribute: http://youtu.be/zhTswTygMfw

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