“Death leaves a heartache no one can heal, love leaves a memory no one can steal.” ― a headstone in Ireland
This past week we lost two in Myelomaville. Actually we lost more, as I read on FB, but these two many of us had come to know through their blog musings. Sean Tiernan and Paula Kilgallon. Both were showing signs of failing and then very quickly, they left us. Margaret wrote a wonderful piece on Paula.
When this happens, for me, I feel like I’ve lost a chunk of myself. An understandable feeling of heaviness comes over me. It’s hard and brings to the forefront, a very stark reminder, that whatever joy and peace I am experiencing with Dave in his remission, that it could be quite fleeting. But I choose to continue to fully embrace our current state of happiness. It would be unfair to him for me not to. And certainly, unfair to me as well, not too mention our children, friends, and family. We have much to be grateful for, however long it lasts. I often don’t share these things with Dave. He remains blissfully uninvolved with the disease, the science, the stats, the many friends I have made. He has a few he has made and he is always very willing to be dragged along with me to meet some new ones and thoroughly enjoys himself. I only share the losses with him on the ones he has come to know. He usually swallows hard. As his caregiver, it is my job to protect him, but some things, I simply have to tell him. Like when Bruce Bertsche died. I didn’t tell him for days, not until after I talked to Jan. She knew I hadn’t told him. After we talked for over an hour, she ended with, “Lori, you need to tell Dave.” I said, “I know. I will right now. I just wanted to talk to you first.” He was pretty devastated.
What I often have thought to myself, each time I lose someone I have come to know, is that I am much richer for having known them, even if only for a while. Even though it is painful for me to lose them and think about those things I don’t like to spend time worrying about. That someday I could be a widow to this awful disease. I could have chosen to not write my blog and simply move on and live our life and never known these people and then grieve their deaths. All I can tell you is I never feel regret and for that I am grateful for my choice. To know you. My “Myeloma Blessings”, as Jan Bertsche calls you. You are truly blessings and inspirational in so many ways you may never begin to realize. When you put up pictures of graduations, dinners, parties, marriages, grandchildren, it bolsters me. It makes me smile. You are LIVING! It’s SWEEEEEEET, as the young folks say.
In this time frame, I got two GREAT reports on two women battling late stage, aggressive, breast cancer. I mean, miracle reports! One who after 4 months of chemo to reduce a very large tumor, had her surgery. They couldn’t find the tumor, evidence of the tumor and her nodes were negative! Her scar was bigger than they discussed because the surgeon felt compelled to search further than the site! Her husband is also a Myeloma patient which is how I came to know her through my blog. I floated on that news for days. And then another knitting friend, locally, went in for her surgery this week and also had fantastic results and news.
I find ‘life’ is often like this. We have these HIGHS and LOWS, good news, bad news. Sometimes it’s really hard to compartmentalize it all. For me, I just experience the JOY, and quietly, respectfully, honor my grief. I don’t let one stop me from feeling the other. They are both important to me.
What they all have in common is they are inspiring. Paula and Sean were and will remain inspirational to me and many others in the Myeloma world and of course the hearts of their friends and family. They truly LIVED and gave so much to so many of us, sharing their journey and sometimes personal notes and comments to me and others. The breast cancer ladies are inspiring in the fortitude of their journey, their courage, attitude and very personal struggle to overcome this obstacle in their life.
The pieces that leave me when we lose someone begin to fill in as I read the testimonials of those who loved them and knew them better than I. All that they contributed to the happiness in the lives of others. Somehow it brings me some measure of peace. Our tradition to memorialize their life, their struggles, having Wakes and telling stories, I know helps to bring a peace to us all.
“People may not remember exactly what you did, or what you said, but they will always remember how you made them feel.”
All I can tell you is, these guys made me feel good. Damn good.
dear lori,
once again, the wisdom of your experience being shared on your blog has helped so many people. i love the part about feeling the joy of living, yet quietly honoring your grief – that one does not cancel out the other. and i know both sean and paula, two extraordinarily wise and kind souls would champion that notion because they each were so committed to living as fully as possible, even in the face of their unrelenting suffering and wrestling with MM. your dave and my hugh have walked the same paths, both not into researching, corresponding, et. al. but hugh surprized me on the day of sean’s funeral after i mentioned i would wear a bright color, as nigel, his brother suggested as a way of honoring sean’s “looking of the bright side of life”, when he came down dressed for the day in a bright red shirt. for sean. for me. i know there have been many times that dave also showed such kindness and sensitivity to many of yours and his MM friends. it’s a lovely gift, each to their own, and helps us to strike a balance in our lives to support one another in very touching and delightful ways – just as your blog and the wonderful comments of all those above pay testiment to. warm hugs, karen
Karen, your story of Hugh putting on his red shirt in solidarity so warms my heart. Good for him! Good for you for bringing him along. He’s so lucky to have you!
Love you to dear Jan. Miss you. We have to plan a girl’s meet up! Something wild and fun!
Beautifully written dear friend. It breaks my heart that myeloma has taken another life. So many mm friends struggling right now. I just pray that new treatments become available. Love to you.
Thank you Brenda. I agree.
Lori, I identify with your and your husband’s differing approaches. Mine says he doesn’t want to spend his time on his disease, which I appreciate. I do the reading and communicating, looking for ideas on decisions we must make. And I am a person who deals with everything verbally – I really appreciate the listeners and contributors on this blog and the list serve, I guess I need an outlet to cope. We lost a long-time friend just recently to myeloma amyloidosis – he was Dx about ten years ago and had an early SCT shortly thereafter. We were stunned to have myeloma in our lives as well, Dx almost 4 years ago – such a niche disease for two close friends. But the losses of people we “know” like this friend and Paula, bring us back down to reality pretty quickly. It took me a couple of days to be able to say anything to my husband about Paula, who he knew only through me and the myeloma buddies and bunnies that arrived. If I can be irreverent, and because it is Paula I will be, it reminds me of the Far Side cartoon with the penguins on the ice flow. There is one great big polar bear wearing a fake penguin beak in the middle, and one penguin says to another, “Is it just me, or are there some of us missing?”
Julie, I too needed an outlet to cope and to heal. My tentative beginnings with this blog helped me to sort things out for myself. I love your musings about Paula and her myeloma buddies. It was sweet to see all the photos of them that people were putting up. Such a lovely remembrance she has left for everyone.
Lori, So sorry to hear about the passing of your friends. Myeloma has taken so much from all of us dealing with it. But it has also made very clear what is really important in life. It is hard to live happily when you know the disease will rear it’s ugly head again. Sounds like you are focusing on Dave’s CR and Living. We are too. Remember the blessings of knowing those who succumbed to Myeloma and all we give to each other as we communicate online. God’s blessings to you and the families and friends of those who are gone.
Jet, well said and thank you for your thoughts! Each pair that deals with this do so differently, I’ve discovered. Pat K and I have discussed this as he gets frustrated with patients who don’t know about their disease. I tried to explain to him that we each have roles in our marriage that we are comfortable with and do better. That each of them have to find their own balance and it’s not always the same for one as another. There are coping mechanisms that we each need. Dave’s is his work. Mine is keeping him able to do that and finding friendship and solace in the virtual arms of others on this journey. It all works. 🙂
P.S. Just read Sandy’s comment and your response and I have to say I totally agree… there are a lot of people out there with myeloma, but there are some I connect with, because we would have been friends anyway and it’s only because of myeloma that we had the chance to meet, whether in person or online. That has to be something to celebrate…?
No one understands what we are going through better than someone else going through it too. I am glad to know the new friends I’ve met through having this disease, however long or short those connections are for. That IS life! No guarantees, even if we think there should be. Having cancer makes you know that in a very real way, doesn’t it?
Hey Lori
What a well-written and touching blog! I had to respond, as I really like what you said about making sure to feel both grief and joy and not letting one stop you from having the other. ALL our emotions are important and when you’re facing any sort of disease/cancer/injury, it’s especially important (for me, at any rate) to honour all the feelings that come up – that’s what being alive is, in my opinion. When/if I stop feeling, that’s when I start dying.
My actual death from myeloma or a related illness remains to be seen, but nonetheless all of us will die from something… I personally don’t find myeloma such an “awful disease” – are there any “pleasant” diseases? No, it’s just the one I (and Dave) got. At least the lot has been drawn for us… most likely! There’s nothing to say we can’t get run over by a bus in the interim, just like anyone else. I hope that doesn’t upset you. I find it quite amusingly comforting.
I also find it interesting in your case, that Dave is the one with myeloma and not wanting to discuss it, blog about it, join support groups, etc., while in my situation, I am the one with the disease and my partner/carer just carries on helping me to enjoy the good times and supports me practically and emotionally through the bad times, but doesn’t like to discuss it much. We’re all so different!
If you’re interested, I also write a blog: jetblackliving.wordpress.com.
I found La Cootina after she passed away and realized she had corresponded with me once or twice on my blog. As I was reading about her I was knowing her and grieving her loss all at the same time.
Susie, it’s interesting that while we have met because of myeloma, I feel such a kindred spirit to many of you and realize that I would have been friends with you under other circumstances as well. I would imagine that is a little part of the thread that keeps pulling you back. And of course we are happy that it does. 🙂
I love reading about their lives, their friends, their pets, escapades, and of course Paula and I shared a love of fiber.
Nicely written thought piece on how we live with loss and joy and …. just live. When I knew that Paula was being given palliative care, I began thinking about what she meant to me and I found myself connected to that Higher Source that helped me write about it. Some will remember Andre, the photographer from Seattle. He was my first blog connection and he and my relative were at SCCA together. I still remember his grace and humor and what I learned from him was more than about this disease. And so it was with La Cootina’s bluntness, Suzie’s poems about Hamada, Sean’s wierd wit and Paula’s precious view of the world. While I miss each of them and others who have left my life in other ways, like you I treasure that I even had the connection.
Beautiful crafted words speaking volumes Lori. A great tribute to these lovely people. I have tried a little to withdraw from MM after my five years of caring but the ‘cord’ always pulls me back again. I know that it is good for me to get on with my life and I think I am doing that well. Still, everytime I hear of another succumbing to MM my heart is so saddened and I return to those dreadful days of loss once more. How these wonderful people fought to stay with their familes, how much they all went through, how much they gave to us with their humour and honesty. Such bravery. We become attached by our words, across the world our pain is shared and by the simlarity of our journeys with this dreadful disease. And most of all we become friends that share a common grief. Blessings dearone – your words help others.
Thanks, Lori. A lovely and loving tribute, which reminds us all that there is also GOOD news…not that I can think of any right now (!)…but give me a day or two, and I will be back in the saddle, as Paula would have wanted (gee wiz, I just can’t believe she’s gone, and that I no longer will receive messages from her…).
It’s tough when a myeloma friend or a member of our group dies…but when it’s a fellow blogger (remember La Cootina?) I find it even harder to take.
I was also very sad to read about Sean, whose sense of humor I very much enjoyed. I didn’t post about his death mainly because I didn’t want Paula to learn of it from my blog. She was already in the hospital…
Anyway, I’ve decided to go ahead and post about our recent trip to London. I know Paula would have really enjoyed reading about a few of the amusing things that happened…yep…