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Pat’s Place: The Power Of Momentum

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Published: Nov 6, 2015 5:47 pm

In my column last month, I shared details of my plan to push the envelope and undergo back-to-back, or tandem, autologous stem cell transplants.

I made a forceful point in that column about the importance of living in the moment; not looking ahead to the point that I lost precious days in the weeks leading up to the second transplant.

For the most part, I was pretty good at living in the moment. For example, I squeezed in a trip to Madison with my wife Pattie to see a University of Wisconsin football game. I also flew to Boston for some meetings with fellow myeloma patients and caregivers. I tried to make the most of every day. I have to admit, though, I slipped up a number of times as I an­tic­i­pated the next trip to hell and back.

Before my second transplant, my third PET scan in four months showed some amazing news: my myeloma had continued to degrade, leaving only a measurable shadow in two of the most recent bone lesions.

While many specialists would have embraced the news and stopped there, my doctor insisted we proceed full speed ahead with the second transplant. At the time I was good with that. Stick to the plan and try to wipe out all the measurable myeloma. The hope is that this will allow me to stay on a less toxic maintenance therapy regimen. Remember, being a nonsecretor com­pli­cates things. So does the pesky clone that pops bone lesions at the drop of a hat.

What do I mean by “At the time I was good with that”?

In a number of ways, the second of my two transplants has gone better than the first one this summer. Yet the toughest, darkest days – Day Six through Day Ten – were literally unbearable. My white counts had bottomed out and allowed a bug in my gut to thicken my stomach lining, preventing most food or drink from passing through.

The pain was excruciating. My transplant team tried to control the nausea, but we couldn’t stay ahead of it. Nonstop diarrhea didn't help. I was so drugged up I fell as I tried to get from my bed into a wheelchair on the way for an emergency CT of my belly.

Steady doses of IV antibiotics – and steady engraftment of the over 8 million stem cells they infused back in me on Days One and Two – seem to have helped get everything under control again.

By the time this month’s column runs, I will have checked into a local hotel as an outpatient for a few more days. My docs here feel I can’t cut back the outpatient round of recovery and head home right away.

I haven’t forgotten about those five miserable days on the way to recovery. Honestly, if you would have given me a gun, there was a strong possibility I would have used it. I felt that bad.

One thing I've learned over the years stuck in cancer purgatory: celebrating fun things – and embracing well wishes from others – works best around the edges. When things are really hard, when the pain and com­pli­ca­tions knock you down, the "You can do this" cheerleading doesn't ring true, at least for me. On the most basic level, if you're sick enough, if you're in enough physical or emotional pain, nothing helps.

But before the high-dose chemo could kick in, knowing so many friends, family, and readers were supporting me meant the world. The same holds true for days like yesterday. I didn't feel great, but when my nurse, Scott, unhooked me from my IV, it was a big time emotional boost. Answering emails and comments had seemed like a chore. Now, almost like magic, the heartfelt support hit home.

One word sums up what I'm trying to say: momentum. Good news begets better news. Despair and pain can send you spiraling down.

Of course we won’t know for several more months how well the tandem transplants will work. All indicators point toward a good result. Does that make it all worthwhile? I’m pausing here. That’s how bad it was hanging on a half dozen days ago.

Compared to what I experienced two weeks ago, any obstacles or com­pli­ca­tions I’m running into now seem like a picnic. Thanks all for caring enough to take the time to help me move forward. I couldn’t have done it without you!

Feel good and keep smiling!

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .

Photo of Pat Killingsworth, weekly columnist at The Myeloma Beacon.
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23 Comments »

  • Cheryl said:

    Pat,

    You are such an inspiration! Being that sick is so difficult, and I am so glad to hear you are certainly on a better path than you were just a short time ago.

    Please know that many of us that read the Beacon and use it to find answers and guidance really do appreciate your column. I've experienced one transplant and hope I do not have to have another, but if I do, I know the light at the end of that dark, long "transplant tunnel" will promise better days ahead.

    Hoping all your better days are ahead of you now!

  • Katie K. said:

    So very glad you are feeling better, Pat. You are one tough cookie. Take care.

  • Christel Sanders said:

    Your spirit is remarkable Pat. I am reading your story carefully. Complications after my first transplant made me incredible sick, also to the point this is it. I promised myself not to do a transplant ever again. Reading your heartfelt agony and your will to overcome is a lesson for me, thank you for that Pat from the bottom of my heart. May be in the future I will be able to consider a second transplant if necessary because you stated the multiple myeloma case very clear. In case I relapse and I want to have at least a chance on any good moments I first have to go to the depths of physical and emotional despair again. Salute to your courage and in the hope your beautiful moments will be uncountable, bless you Pat.

  • Sylvia said:

    I'm thinking of you, Pat. I wish you good days of healing.

  • Monica said:

    So glad to hear you are over the hump! Complications can sure make the unbearable turn into pure hell. I'm sorry you went through that hell. Let's hope it will turn out to be well worth it, and your myeloma goes into complete remission for decades! Every day will bring more strength and energy. Keep a log of what you can do now, and compare it to what you can do in a week, 2 weeks, etc. You will see the progress and it will spur you on to do even more. Good luck in a speedy recovery!

  • Upasana Pannu said:

    Indeed, thinking of you and wishing you the best Mr. Killingsworth! May this Thanksgiving bring you all health and happiness and much to be thankful about!

  • Julie said:

    Wow Pat, you've sure been thru it! So glad to read you're on the "other" side of SCT torture now! When you feel up to it, can you address the topic of what happened re: your "neutropenic crash"/ low low low whites and the GI complication you had? Sounds just awful! So glad you are no longer suffering and your body is gaining strength and healing now. Congrats on all your medical successes, and thank you so much for sharing all your medical journeys and MM insights with all of us out here in Myelomaville!

  • Pusser said:

    Thanks for the update. My first SCT was in April 2014. I'd done Velcade beforehand, and then started full-dose Revlimid last fall. It did a number on my system, so we moved to a half-dose this summer. Now my light-chain numbers are climbing, so I start back on Velcade next week. This disease is maddeningly unpredictable. I hope the protocols you've undergone do the trick!

  • lizzy said:

    Pat, there are no words for how much YOU pick me up. I just got home from 5 days of required hospital stay for induction. Not sure why, but required by insurance. The mental fatigue can be intense. Before checking in on Monday, though, I went skydiving. Carpe diem. Go.fight.WIN.

  • PattyB said:

    Wow Pat - what an ordeal! Thank you for being such an inspiration. I cannot imagine what you went through on those tough days but I am so glad you came through it. I had been looking forward to hearing about your experience since my husband is at Day +68 from his first autologous stem cell transplant. I told him about your consideration of a tandem stem cell transplant and he was quite interested, but no one on our treatment team had ever said anything about a tandem. Well, at Day +30 our stem cell doctor said that she was considering it! We were shocked.

    We head back to MD Anderson at the end of the month for his Day +90 checkup. We are a little fearful of what she is going to suggest because he feels so good right now. Like you, I do not know if he wants to go through the demands of another stem cell transplant so soon. According to our team, my husband's multiple myeloma is aggressive and rare and they want to treat it accordingly.

    As always, I look forward to reading about your experiences with treatment. Thanks for sharing.

  • Pat Killingsworth (author) said:

    Thanks, All! Traveling back to Florida and in Chicago now waiting for connecting flight. Honestly, not holding up too well. Thank God Pattie insisted on flying home with me.

    Skydiving Lizzy, really? Sounds fun; I'm worried if I hit the ground too hard my bones would fly apart! So maybe I should give it a shot!

  • Daniel Riebow said:

    Pat, on numerous occasions my wife and I have commented that as horrific as my own myeloma journey has been, in contrast to yours, mine has been a cakewalk. I really don't know if a "thank you" is appropriate, but I am extremely grateful to you for sharing your experiences.

    I was especially taken with your sentiment about "well wishes" being best served as hor dourves, and not a main course, when your suffering is beyond your mind's capacity to grasp! In that space a "hang in there", or an "I'm praying for you", feels like an assault.

    I am grateful to hear that you appear to have left that phase of your current journey, and I do wish you the best!

    Aloha
    Daniel

  • Mike O'Neil said:

    Hi Pat,

    Just wanted you to know I'm a frequent reader of your articles and I hope you're feeling well enough to accept my best wishes for your recovery. I am in Paris and am dealing with a difficult case of myeloma.

    Bon rétablissement,
    Mîke

  • Barbara Kaiser said:

    Remember the wedding vows? You lean on Pattie my friend. That's why she's there and that is exactly where she wants to be, "in sickness or in health". Get stronger and be well soon. Thinking of you, Barbara

  • Diana Barker said:

    Happy to hear that you are feeling better, you hung in there like a trooper , and I know what that feels like. It s so hard to explain how dreadful you feel at those times. Keep strong, I enjoy your columns.

  • Jan said:

    Pat,

    Good to hear you are home. You did well to make it home so quickly. I was interested in knowing, did you have have any transfusions of blood, or platelets?

    I did my second auto in January 7 1/2 years after my first. Never did any maintenance, my total choice. Had Cytoxan preconditioning and melphalan for the auto I did in January. All numbers back to CR. Not doing maintenance this time either (my choice). Maybe I am playing with a loaded gun, but my quality of life is like a normal person ... so it is the game I am playing. It is so good to be able to compare treatments. Hoping this work until the T-cell treatment is up to prime time, or something else better starts producing great results. (Brenda asked me many months ago for a follow up, so if she is reading this, hope this helps.)

    Exciting the results you are getting. I was really surprised to find out after I spent 5+ weeks as an outpatient at Mayo (3 days in hospital) that total cost was around $125,000. Which makes it not much more that being on Revlimid for a year. How much does that compare to the cost where you're at?

    All the best,
    Jan

  • Pat Killingsworth (author) said:

    As always, so great to hear from everyone! I'm home (second full day) and it's true,"There's no place like home!"

    Jan, I'm not sure the costs for either on of the tandems. I'm guessing somewhere between $100,000 and $200,000. Maybe more. Our health care system is far from perfect. But never think that I'm not appreciative for sky high prices of care and medications that help keep me going. New Frankenstein movie out soon (we need another one?). Guess I feel like the patched-together monster at times ...

  • Thomas Shell said:

    Aloha Pat,

    Thank you again for sharing all that you go through. You remind me how good my life still is and that every good day is a blessing not to be wasted.

    I am hoping that you feel better soon. You continue to lead the way for all of us. Please enjoy the comforts of home as best as you can!

    Much Aloha
    Tom

  • Maureen Nuckols said:

    Hello Pat,

    Thank you for sharing your story even when it is so difficult. It gives me courage to keep going and also to write about it. I experienced some of the extreme GI symptoms with my last round of Kyprolis. My husband did keep me company, but I needed to withdraw from the world for a few days. Sometimes just taking one moment at a time. Breathe in, breathe out.

    Glad you are traveling home. Now the weakness and fatigue is your next challenge. I only had 1 autologous stem cell transplant because doctors changed midstream and voted against it. That is our other challenge. Which doctor and which recommendation. That is a leap of faith.

    Take care. Maureen

  • Pat Killingsworth (author) said:

    Take care of yourself, dear friends. No one said it is easy. I know for a fact none of it is fair. Sleep well, fellow myeloma warriors!

  • Jeff McNabb said:

    Thanks Pat,

    My doctors have suggested a tandem, first with my stem cells that remain, and then with my sister's who is a match.

    I blew through my first stem cell in about a year and they switched me over to Kyprolis and Pomalyst. They have done well. I am trying to evaluate, as you have, going through the tandem versus seeing if some of the recently approved drugs or clinical trials might do as well.

    Thank you for your column.

  • Pat Killingsworth (author) said:

    Jeff, this is a complicated question. It would help if stats leaned strongly one way or the other favoring certain therapies. But in many cases it remains more art than science. I'm not a physician, but if I were to give you advice I'd need more information. Why such an aggressive approach? My understanding is that a sibling match is much safer, but an allo is still a really big deal. Much tougher than an auto, which you've already experienced. There's a chance you could be "cured," (ten years+ myeloma free) but only a one out of five chance. Otherwise same chances of success as a regular auto, or in this case auto tandem. Facing years of serious side effects, is it worth the risk? Maybe so. But with less risky T cell therapies emerging -- and the fact you're responding to standard therapies -- I think this is a big step. I know patients that have benefited, and others that have suffered with little result. Good luck with an almost impossible decision. Been there, done that!

  • Neal Breen said:

    Thanks Pat, another inspirational column. I'm a myeloma patient in Ireland and it's just over 2 years since my autologous BMT, but the memories of those days when my bloods dropped will live with me forever. You describe so well how tough it is and I'm full of wonder and awe that you went for back-to-back tandem transplants.

    Wishing you all the best with your recovery and I look forward to your future columns!

    Take care,
    Neal.