MPNforum Magazine

Tribute to Kathy Dubin Flynn

Well Kathy, here I sit.  At my computer.  Trying to find the words to write a tribute to you.  My friend.  My soul sister.

I knew you four years.  Only a short four years.  But it feels like a lifetime.  That’s how deeply we connected.  That’s how much we touched each other.

Perhaps the best way to honor you is with your own words.  So I offer this extraction.  Of text messages.  Emails.  Facebook private IMs.  Interviews.   Only a very small smattering of exchanges that I think you would want me to share.  So much more remains private.  Between you and me.

I love you Kathy.  I love you.  Save a place for me at God’s table.  Save a place for Genny.  And make sure there is plenty of wine.  We’ll raise a toast to each other then.  I’ll see you soon enough, sweet, loving friend.  Sweet, soul sister.

Interview sessions — 2011-2013 – Kathy’s Voice:

I researched like a crazy person – I still do! I found it very difficult to find data, because the disease is so rare, and because so much of it is outdated information. I think my initial GOOD info came from the ACOR list servs (MPN-NET) where a few people shared their stories and knowledge and directed me to more online resources.

Getting MF didn’t really change me as much as transplant did. But it did get me very focused on my family’s future and my need to be around for my kids.

Not embarrassed to be bald, but didn’t like the way I looked.  First time around, a head artist painted my head.  Was the first time n front of my mom that I revealed my head.  Very intimate moment.  Sat with the artist for three hours. The next day when I walked out with the henna on my head was the first time I had felt beautiful in months.  First time strangers grinned at me instead of giving me that pitiful look.  I even had one guy with his wife who came up and took a picture with me.

The first transplant failed.  We all know that now.  Second time around with my next transplant, I didn’t need to do the henna again. This time I used scarfs because they made me feel more feminine.  I have a big problem with the bald cancer Barbie.  I understand I think what they are trying to accomplish with that but to me it disregards my feeling of this isn’t beautiful, loosing hair sucks.  I appreciate people complimenting me but at the same time when it is being presented as beautiful, when you really mourn your hair loss, the compliments don’t help.  I didn’t like the glamorization of the bald Barbie.

I often think back to that first transplant – when I committed – I really, really, really needed to believe it would work.  Felt that strength is what got me through.  So getting to the point where it failed and then having to come up with strength to go through a second transplant, I tortured myself thinking I had to get that attitude back.  I could not get back there. One night, lying in bed, I realized I don’t have to get there.  It’s not about me believing it will work.  What I needed to feel is confident that I’m doing the right thing for me.  I made peace with that.  It shifted everything.  I allowed myself not to be in control.  All I really needed was the forceful belief that I was doing everything I could.

Of course I mourn not being a 100% healthy person but being stuck on that is not my life.

For a long time I didn’t want to see the gifts this disease brought me.  But there are gifts.  The people I’m connected with.  And gratitude.   I’ve moved beyond the anger and frustration of healthy people not having this perspective.

I’d do it [transplant] again if I had to.

Text Messages, Email, 2012- through 2015 – Kathy’s Voice:

8-19-12;  Thank you so much, Ann. I agree, and have tried to teach my children exactly that: being brave doesn’t mean you’re not scared. What it really means is that even when you are scared, you forge ahead anyway.

10-21-12:  I was just thinking today about the possibility of meeting you and Genny in person. That thought thrills me beyond words. I can’t imagine how I’d get past just crying and looking at you both but I guess we would figure it out.   [smile emoticon]

10-23-12:  I am completely SHOCKED (not) that you are also stubborn. [smile emoticon] I think “stubborn” tends to travel with “tenacious,” both of which are ingredients we all need to travel this path.

10-26-12:  I have every intention of vino-ing with you, Ann! I find it odd that with my liver enzyme numbers, I’m still allowed to do that, but I have asked specifically several times about whether I should give up my glass or two of wine, and everyone seems comfortable that I’m still ok to do that since I don’t abuse the privilege.

02-13-13:  I’m proud to be on the same team with you and Genny, and like you, find it very healing to be helpful to others while I also seek help and support myself along this crazy road.

03-03-13:  I have found lately that I am needing to surround myself more and more with people who are living this life. It has become harder for me to relate to those who aren’t “in it.” That worries me a bit, but for now, peer support is what I am craving.

03-09-13:  It has been difficult to live “on hold” for two years, but I would say yes to ten transplants if that’s what it takes to have a shot at kicking my disease to the curb. A dear friend told me recently that my story spoke to her as an example of “the power of one.” If not for my donor’s decision to register, I would not have a suitable match. There are too many people in need of stem cell transplantation for a chance to extend life. Without a matched donor, they do not get that chance. It only takes one!”

03-12-13:  I think I mentioned to you that I’m finding myself more and more drawn to those in our little “club,” and I have less patience for explaining everything constantly to friends who are living a more “typical” life.  I am incredibly blessed with friends who are doing their best to understand and to help, and with my sweet brother, who bends over backwards to help me in every way possible.

10-16-13:  I think the biggest difference between transplant one and transplant two, as time goes on, is that I find that my connections with others who live this life, the crazy blood cancer and post-transplant experience, are among the most precious in my life. I am so lucky to have great friends and family, but those who are knowledgeable and engaged on the MPN topic; especially those of us who share the “go for it” transplant philosophy, are the ones I gravitate to every day because they understand how this all affects day to day life, philosophy, mood, because they are living it too.

7-08-14:  I CAN’T WAIT to spend time with Genny, and you and Shelley and Katie. 

***In August of 2014, Kathy came to Colorado and spent a long weekend with Ann, Genny, Shelley and Katie, all of whom are connected to the transplant world.  It was so wonderful to finally hug each other.

Kathy’s Glioblastoma Brain Caner- Unless otherwise noted, Kathy’s Voice:

10-21-14:  Ann’s IM to Kathy:  Kathy — I feel so compelled to write to you. To tell you I love you like a little sister. To offer you encouragement that you can do this next hard thing.   To tell you to fight like a girl. Fight! Holding you deep in my heart. Saying prayers for your surgery tomorrow. Sending you my love.

10-21-14:  Kathy’s response to Ann:  Thanks, Ann. The messages are quite overwhelming but I am also overwhelmed with love. Thank you for sharing this and know how difficult it is to not know how when or where I will be able to respond!!

10-27-14, 5:20 pm:  [Heart emoticon] – sent from Kathy to Ann

10-30-14:  It is important to me to project that it is ok to laugh at the life lessons in all of this.. it is NOT tragic; it’s just life and death. The shortcuts are what I am really grateful and having what amounts to a hard knocks degree in life and illness is SUCH a gift. It frees me up to enjoy the good stuff! Frees me up to love. And forgive! And that is all that matters.

10-31-14:  Hey lady! Just responding privately to your message as I am aware that I am sending out the “I am ready for visitors!” message loud and clear, but only to those I feel closest to!! You are one in my innermost circle so wanted to offer that up to you privately.

Yes to the best bottle of wine. [smile emoticon ]  NO to the margaritas!! Ha ha ha! I love you dearly and want you to meet my mom as she is here to help… would love for the two of you to get to know each other a bit

11-3-14:  Headaches are non existent. I don’t even remember them!! My little secret: brain surgery and staples do not hurt!! At all.

11-9-14:  It was important to me to avoid sounding grim and to maintain a sense of humor. I can’t stand it when people repost my stuff to their friends and tag me — I get all those notifications and they feel sad and morose. Very important for people to know that I am here right now and need to NOT feel memorialized. As in, “oh, I was so happy to meet you…” I need to leave a legacy of living in the moment!

11-28-14:  Spent much of yesterday asleep in my bed in Galveston in a beautiful “little” townhouse on the beach. Omg, what a spectacular jewel of a place. Just given to us, at no cost.

12-12-14:  I think of you and Genny and Shelley and our weekend in Denver all the time and I am SO glad that we were able to do that. It thrills me to know you all.

12-17-14:  Yesterday was a little ugly. Headache kind of wrecked my day! And I have no idea when they will hit. It’s like laying in wait for bad days… which are completely different than good days.

***In January 2015, Ann, Genny, Shelley, and Katie visited Kathy in Texas

In Texas with Kathy:        Shelley, Cyndy, Marina, Bonnie and Genny.

3-12-15:  Funny that you wrote, Ann! I was thinking of you today. I have been up and down, honestly… researching some experimental treatments and trying to figure out where I sit on the mood continuum. I’m just not sure how I am supposed to feel, or how I do feel. It has been really hard to surrender so much independence… I can no longer drive because of the seizures and I have lost a ton of privacy. Don’t really like that much.

I feel as if we are very close… I just miss you terribly when we are far apart. I was talking to Genny last night about how much I wish you could ALL come out here for SXSW! Love you all like family. Such a bond we share! I love you, Ann… I am just very sad and not sure what to tackle first. This is so very difficult!

I really, really want to come to terms with the reality of what this will do / is doing to my family. Physically, everything is MUCH harder than it has ever been and that part is very hard to accept. I find myself resenting the loss of control and needing to do a better job making choices with my time. Need to be around for my kids and need to get letters and things written for my kids.

I know without any doubt that you are a safe person for me.

3-13-15:  I love you too, Ann. I feel rested this morning and determined to get up and out and get some supportive SHOES for my very sore feet. Lordy! It is awful feeling instantly heavier and in pain! Life has gotten physically difficult and that makes me cranky. Shoes with padding and support are my first order of the day. Going to get in the shower while it is still relatively easy to do so ! Love you, my friend. [heart emoticon]  Thank you for listening!

9-1-15:  Hi Ann! I have had you in my thoughts as well. And I love you deeply as well! Wish I could hug you and visit.   I need girl time!

***On October 28, 2015, Genny, Ann, Shelley, Bonnie, Marina, and Cyndy traveled to Texas to celebrate with Kathy her 50^th birthday. All pictured here with Kathy’s mom.

On November 13, 2015, Kathy gained her angel wings.

Such a beautiful warrior woman.  Gone.  But never forgotten.

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