Pat’s Place: Dare I Dream Again?
I have some wonderful news to share. My last PET scan showed no active myeloma anywhere. None in my existing lesions, and the extramedullary tumor in my groin is gone. No new lesions.
Given that I’ve become a nonsecretor over time, tests on my blood and urine don’t help much in tracking my myeloma. My light chains are in the normal range, whether my myeloma is active or not. Only a PET scan and bone marrow biopsy can help my myeloma specialist follow along.
At 100 days post transplant, my weight is still down 10 pounds or so. I’ve been fighting an intestinal infection on and off for months. My breathing is labored sometimes and I need to get stronger, so I’m facing my share of challenges.
But for the first time in four years, I’m “myeloma free.” While most would consider this cause for celebration, honestly, I’m not sure what to make of it. As a number of Beacon columnists have shared over the years, crossroads like this one can be difficult, even if the news is good.
True, I still have the unpleasant security blanket of ongoing chemotherapy to try and keep my myeloma down and out. But myeloma free? That’s challenging for me emotionally. I understand – better than most – that my body is having trouble recovering from therapy. Additionally, the new drugs haven’t been working for me very long. I’ve accepted my mortality.
Lying in bed this morning watching the news, I realized how much I’m enjoying being home, despite a difficult recovery. So, at the same time as I’m celebrating the news that my myeloma responded well to our risky and aggressive tandem stem cell transplant plan, I’m facing another psychological reality. Dare I hope for more than a year or two of precious life? Dare I dream about the future again?
Admitting how much I care – how much I want to stick around – leaves me feeling vulnerable. I missed the 4th of July last year; I was in the hospital feeling poorly while recovering from my first stem cell transplant. I missed Halloween, too, sitting once again alone in my hospital bed, still feeling weak and nauseous following my second transplant.
I love sitting on the beach and watching colorful fireworks displays up and down the coast. I love Halloween. I dress our dog, Finnegan, up and off we go, interacting with kids in our neighborhood and having fun.
I was home for Christmas, but I was still recovering from C. diff and the pounding my body took from a pair of transplants.
As I start to feel better, I watch shows and commercials filled with people worried about how a dating website can help them find a match, or which car will help make the neighbors’ heads turn.
I long for normal. I can’t imagine what it’s like to worry about day-to-day problems without the context of whether I’ll be around for the next holiday, birthday, or anniversary. Last night I spiked a 104 degree Fahrenheit (40 degree Celsius) fever after getting my Kyprolis (carfilzomib) infusion in the morning. This is hard. Still, I know I’ll get stronger. When I do, dare I dream of recapturing my innocence and living a normal life?
I’m afraid it will take more than one good test report for that. Will the therapy hold until my next check-up at the end of April? And again in August?
I’m getting better at living one day at a time. But planning for the future more than six or eight months out? Someday, but not today.
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 .
Over the last year and a half, your words have offered my husband and me hope and comfort. You have been in our thoughts and especially our prayers. I am rejoicing to know that you are myeloma free and I can't wait to tell my husband! May you enjoy this time of peace and simplicity and know that you, my friend, have made a difference. Many blessings and thanks!
Lisa
Thank you for continuing to honestly and openly take us along your journey with you. I'm a myeloma patient myself and never quite know what to think of CRs (complete response) either – except to be so grateful for them, as many never get there. I look forward to your columns and am thrilled to hear you are myeloma-free! Perhaps there is wisdom in just enjoying being home, and watching the news. You are recovering from a lot. I, like many, also know what a tandem transplant recovery feels like, and it is no joke. I hope you enjoy today – and tomorrow – and are able to enjoy the people around you while it is called today. You are making this a richer world for me as a reader and fellow traveler on this scary road. Thank you.
Pat, so good always to read your words, and so encouraging to hear your strength and that you are myeloma free. YES, I say dare to dream. You have just come through a lot of treatment, keep strong and I will be praying for your strength to return.
Aloha Pat,
What great news! Myeloma free or not, daring to think about being well is a great blessing.
I am inspired by your courage and your perseverance in fighting your disease. While none of us know tomorrow, you are demonstrating an uncanny ability to fight through your problems in order to enjoy today.
Let tomorrow work itself out tomorrow. We are pulling for your continued improvement!
Much Aloha
Tom
Hey Pat,
I am so happy that you are multiple myeloma-free at this time. We will never have normal again as we know it. Our new normal is living with multiple myeloma, some being in complete response, and others like myself who just recently relapsed (was myeloma free for almost 3 years - 9 month RVD followed by transplant). I can understand your worry of will it come back and how long you have to live. I look at it this way. None of us are promised a long life. We could get in our car and get in fatal car wreck. You cannot change what is happening in your body. So enjoy every day like it is your last. This will give you Peace beyond Understanding. May you continue to be a Blessing to all of us by sharing your story. We are all behind you, rooting you on!
God Bless You - Robin
Nonsecretory guys like us are unique special breed!
Wow, Pat, that is WONDERFUL news. Very glad to hear that you are doing so well.
Best wishes for a long and uneventful remission.
Frank
This is great news, Pat! Thank you for sharing your journey, with all of its trials and tribulations, with us. You are truly amazing, in your persistence, intelligence, and best of all, your sense of humor. After the bombardment of drugs you have absorbed, it's no wonder that you are not up to speed yet. But, I have a feeling, you will be soon! Your tenacity is unmatched!
Wishing you a longstanding sCR!
Best, Ellen Harris
You are all so kind. I read each and every comment, and it fills my heart with hope. This might seem a bit "over-the-top," but it's true. Knowing so many are pulling for me – and that sharing details of my journey can help others – is why I've put my body through what I have. Thank you.
Honestly, we may have pushed things too far. My specialist is a Total Therapy guy. Pound myeloma into submission. But my body is having trouble adjusting to a fairly caustic and intense consolidation therapy for four months, hoping to keep my myeloma down.
I'm in the hospital tonight, hoping I've dodged another bullet. My pneumonia looks like it's a bacterial form common in myeloma immune-compromised patients. I know many of you have been hospitalized for similar situations, most often at the start or deep into their myeloma journey. Unfortunately, tests – which have led to more tests – have revealed organ damage, most likely caused by years of chemotoxicity. Two beefed up stem cell transplants in less than six months probably haven't helped. Nor has starting bridge maintenance 20 days post Day Zero this summer and three-drug consolidation therapy 25 days out. Apparently my body can't take it. This is breaking news. I may have kidney and even liver damage from therapy, infection, or both. My platelets are holding at a pathetic 11,000, and no one knows why. My liver enzymes are elevated. So are my creatinine and BUT levels. I'll know so much more next month. It will be another column that's full of too much of my medical drama. Enough already!
Now you know why your support is so important and touching to me. Things can seem pretty dark when faced with challenges like this. I'm guessing that many of you can relate.
Pat,
God bless you brother! What you've been through is beyond the pale! From my own experience there is NOTHING as grueling as a SCT! To do it three times, wow, I just can't imagine it! And part of my recovery was not only my beat up body, but my emotions too. I found myself very fragile for quite a while.
Here's to a quick recovery,
Julia
Pat,
So sorry for your current situation. I truly have been there. I too had tandem transplants, then during consolidation I crashed (60 days after the second ASCT) with dialysis, dehydration, elevated BUN and creatinine, MRSA, C. diff and a terrible rash and top shelf antibiotics. The only thing different was: 1) I didn't have pneumonia, and 2) I didn't run around bare ass naked. That was a funny story.
It wasn't the shortest hospital stay.
Maybe relevant to your case. I too had low platelets and red blood cells. I passed a little blood in my stool but the GI doc didn't think it was the cause of low counts. I kept getting daily blood and platelets transfusions, but I remained low. Was my system attacking my donor's blood? They finally poured the platelets into me to get my level up to 50. I don't know if that plugged a hole somewhere - but it seemed to do the trick and I got discharged soon afterwards.
I'm not convinced what caused it. Maybe toxicity. Maybe drug reaction. Maybe delayed GVHD even though mine was a autologous stem cell transplant too. I do think my rash and permanent peripheral neuropathy were symptoms of the same funk I was going through.
I can offer hope in the sense that after my kidneys apparently shut down - I did require 4 kidney dialysis - BUT they recovered. My BUN and creatinine are now high normal.
That was just over a year ago. Other than a slow recovery, I haven't had any major issues since last March.
I just want you to know you are just about there. Just a few more wrinkles.
Tie a knot on that rope and hang on a little longer. Try to get those platelets higher.
Craig
Hi Pat,
I was diagnosed with multiple myeloma in 2007 as well. My ASCT was a few months later and was grueling, as you know. It took me almost a year to get back to my former level of physical functioning.
I'm now faced with a second SCT, probably in September, planned by my docs to push me into full remission again. Reading your column this month has strengthened my resolve to "just get through it" and move on.
As someone who was also diagnosed with multiple sclerosis in 1977 at age 27, I can tell you that we never are free from these incurable diseases. But we can push them into the background as much as possible and enjoy every day that we can!
Great point, Julia. The emotional side of all of this seems to be regularly overlooked. The despair I felt during the bad week of both SCTs was debilitating. I hear you. I'm hoping it worked for you!
No new lesions, no active myeloma - THAT IS ABSOLUTELY BRILLIANT. Hang in there, it is amazing from what the body can recover. My liver and kidney functions are now in the normal range after renal failure from the auto (2010) and the beating my liver took from acute GVHD (2011). Apparently my lungs have recovered from the pneumonia as well. Step by step, day by day - you can recover.
All the best,
Libby
Dear Mr. Killingsworth,
You indeed have all of us rooting for you, wishing for you and praying for you. You are wonderful. Thank you for all the inspiration and your amazing sense of humour. You bring hope and energy to so many lives, more than you can imagine.
Wish you health and steady recovery from the transplants.
Best Regards,
Upasana
Good Morning Pat:
I think of you quite often and the rough journey you have been through all these years, you so deserve true happiness. I pray you as well as me and all the others can live a half way normal life. The fear of remission ending so scares us all, but we have to live life at this point in our life one day at a time.
My SCT was at the end of May 2015 and I feared my energy level would never return. It was slow but has returned to normal or above. I will be 73 July 4th and seem to have the energy of a 40 year old and I too was completely out of it on my birthday, but it slowly changed. I am in remission (for now) and have to live everyday as normal as possible. I did suffer kidney damage even though it was caught early going for my normal yearly blood tests. I am in stage 3 kidney failure and that will never change. Multiple myeloma left its mark on me deeply in that area. So please keep the faith. You have the entire multiple myeloma community praying for you and a lengthy remission. God Bless My Friend.
Dare to dream ... and hopefully I will learn that also. So much of what has been a very good life to this point and a reasonably easy first couple rounds of therapy has been wasted recently by my obsession with death. The only times I have ever felt any symptom of multiple myeloma is during treatment. The only sign I have ever had something was wrong was a bad back. Compared to many, I have had a pretty smooth ride so far, but instead of living each day to its fullest, I still catch myself focusing on ... Is this my last spring? Should I keep working if I am going to die in the next couple of years? When is the right time to stop and not hurt my family? How will I navigate a family, assorted businesses', my home ...my life?
Even dumber is the reality that I spend too much time thinking about how much I love my life and never want it to end as opposed to living it. I waited until I was 50 to fall in love. I proposed to my wife with the thought that, even though she is quite a bit younger then I am, everyone in my family lived into their 90's and did so in a healthy manner ... even though they were not nearly as healthy or fit as I am.
WRONG. Sadly, it was only 12 days before our wedding we found out that everything had changed, including many of our hopes and dreams. May 19 marks 4 years since diagnosis, and May 31 is 4 years since I got married. I feel fine, but Wednesday I go find out again – PET # 7 I think. Scary part is we all know that one of these days it's gonna be bad news. Until then, God Grant me the Serenity ... please!
I much appreciate you sharing your experience, Pat, and I am another one who's really pulling for you to get through this next round of physical challenges. A myeloma-free status is an amazing thing for you to attain after all you've been through. I very much hope that the road ahead is not too difficult, and that your body gets itself in the kind of shape that will allow you to really enjoy this remission.
Great news Pat!
I know it is hard to look to the future, but try. Everyone with multiple myeloma is so different when it comes to diagnosis, treatment, side effects, and prognosis. We have followed your progress as your articles have been published at the Beacon, and we are so hopeful for your progress. My husband's stem cell transplant was August 31, 2015 and we went ahead and booked a trip to Europe in May hoping for his good health. We have always been goal-oriented people and it has been difficult living just day to day. I know we are taking a gamble, but we are trying look to a bright future. We hope you will get there soon.
Craig, hearing your story really helps. You, too, Libby. Sounds a lot like what I'm going through – without the rash. Did you read Hugh's story? The emotional side of things is oft forgotten.
Mr. Killingsworth,
Many, many of us read the columns written so generously by the contributors to this site. And, unfortunately, many of us do not make comments on the articles. Please be assured that even though we are mostly silent, our appreciation for all of you and these articles is immeasurable.
We check daily to see which of our "family members" has written and how they are doing. We glean strength for ourselves and our loved ones who are in this multiple myeloma world along with you. We nod when we see a familiar symptom, smile when we read of a new triumph or hurdle crossed, and wipe a tear when we read of a particularly difficult stretch any are incurring.
We are all travelling the road of this very strange and confusing disease from coast to coast, in Canada and the US and abroad. Our prayers and good wishes are with you all ... always. Keep up the fight.
Pat,
You are loved and prayed for daily. God is at your pillow tonight and by your side every day.
Prayers and good luck to all of you. I am fighting breast cancer, the worst kind, inflammatory. I can relate to how you all feel.
5 year prognosis, if lucky 10.
Good news for you, Pat, as far as myeloma is concerned. Tough physical side effects can be really devastating and have a mental effect on your process of recovery and coping. I really hear you. Unfortunately, everyone of us has to balance out what is bearable at toxicity levels for our body. I am reaching my third year post transplant and decided to stop treatment in 2 weeks. My heart is damaged, as are my lungs, GI tract, and my brain functionality. I am 58 now, but I aged physically maybe 15 years in the last 3.5 years. Maybe stopping treatment makes my future more unpredictable, but I really hope it will improve quality of life.
Braveheart Pat, hope your body will be able to recover from the transplant/chemo knockouts. As for your mind, I totally believe in your strength to keep it together, maybe not always, but most of the time. You are an inspiration for humankind. Believe in yourself as we believe in you ... please.
Nadine eloquently expressed my sentiments. Thank you for sharing your journey. We are rooting for you!
Thanks, everyone! Hope that you're doing better, Christel. So many amazing comments. I think reading the comments is more enlightening than our columns!
Pat,
I am so sorry that you have had a setback. I have very strong faith, but I am not a believer that God will not give you more than we can handle. I wish I did. I really do not know what is worse, the physical or the emotional pain. You have been through so much I was hoping the worse was behind you. I wish I could say something inspiring to lift your spirits. All I can say we are both praying for you. Being a true believer in miracles, I will pray that you will be able to go back to normal soon. I think normal is all any of us want. That does not seem too much to ask for.
Pat, even when you are facing another health issue, through your writings you still inspire us. While I am having more challenges with this clinical trial, I realize how fortunate I am. Please keep the Faith.
Take Care,
Jenny
Sending endless positive wishes of support to you Pat and Pattie. You got this Pat! You are so incredibly strong. You were one of my very first invaluable online finds when I was first diagnosed in late 2009. You've been thru so much. Hoping this is just another fork in your healing road. You write our thoughts and lives Pat. Love to you Pat and Pattie from a long time fan.
Hi Pat,
Wow, you HAVE taken a beating. I understand that it will take your body a long time to heal from all that, but that it's so difficult to be patient.
I want to align myself with you in your wariness of hope. I also feel that to hope is to be daring. Balancing despair and hope requires walking a tight rope. It's exhausting. When you fall off, it takes so much energy to get back up on the tightrope, and the process is painful.
There's also the superstitious notion that we are protected from disappointment if we never hope in the first place. But of course, that doesn't work. When we get bad news, we are crushed nevertheless. My sister-in-law, Jennifer, pointed out that avoiding hope just doubles our grief. We grieve twice, once preemptively, and then again when we get the bad news we were trying to protect ourselves from. Despite this, it seems almost impossible for some people (i.e. me) to wean themselves off preemptive grieving.
So we are wary of hope.
But hopelessness is even more painful.
So, I'm wishing you hope, peace and strength, Pat!!
OMG, no wonder you are a bit confused. Myeloma free, let's all scream at the top of our lungs and run around like kids! Oh, no, we can't, because there are insufficient immune cells in your body, and you are not allowed to play outside. That's no fun.
Pat, I do believe you and your organs will slowly recover. Your organs have gotten you this far, and they are exceedingly tolerant and strong. (Something my doctor has said to me.) Your test numbers will gradually return to a more normal range. Just give yourself some restful days and get your immunizations when your are allowed.
I am wondering if the Kyprolis is just a bit too much for you at this moment. I remember other patients being taken off Kyprolis due to a bout with pneumonia even without the challenge of a transplant, let alone tandem transplants. I am sure you and your doctors will watch this and find a solution.
I like the advice about tying a knot and just hanging on. I think Patti should find you a nice piece of rope, and the two of you need to tie a big knot and then hang it or set it somewhere, preferably outside to gaze at while you are sitting in the ocean breeze. I have always benefited from a visual reminder.
You and Patti are in my prayers. You have both had a long and bumpy ride. After my transplant and initial therapy, I could not wait to return to a normal, boring life. It is possible, but we must be patient. Our strength returns slowly. There is not an on/off switch, only a gradual increase of blood cells and immune cells and taste buds and mucus cells lining our digestive system. Maybe you should conduct an experiment of which flavor of ice cream or sherbet at the local shop is your favorite. If you try one per week, by the time you work your way through the menu, your recovery will have progressed much further.
Wishing you restful nights, comfortable days, and a short bout with the pneumonia. We all are pulling for you. You and your writings have improved the quality of all of our lives. We are happy to help add a little quality to yours!!
Rest in peace, Pat. You will be missed by so many.
You are a great man. You will be missed. Now rest.
I read this column the day it came out and it filled me with such hope for myself, Pat, and all the other myeloma sufferers. I'm shocked and saddened by his death and my sincere sympathy to Pat's family. I hope they all know how impacting Pat was on the myeloma community.
JBH
I followed Pat's column since 2013 when my dad was diagnosed. He taught me so much and I felt like he was a friend. Was so sad to hear the news last night of his passing. Thoughts and prayers are with Pat's family. Thank you Pat for your positive outlook and teaching me so much about this horrible disease. Praying for a cure!
To know that just 8 days ago this was written. So much hope and determination. Now I hear about his passing. Almost too much to imagine that Pat is gone. It has been my overwhelming thought all day. Too soon, too loving, too everything to be gone ... Godspeed to Pat, his wife and family and friends. And to all of us left to continue the battle. It is the least we can do for Pat and this lousy disease we all have together in this community.
As a patient with multiple myeloma, I read the Beacon faithfully and find the columns not only informative but mostly encouraging and hopeful.
I feel as if I have found friends (in these writings) although I have never met any of them. Pat was among the writers that I feel I have always gathered strength from and I am very sad that he has lost his long battle. I will enjoy going back and re-reading his columns, as there is so much wisdom and raw emotion in them. I will draw hope from his life of experience with myeloma as I continue to battle my own.
Thank you Pat, you will be missed by All.
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