Pat’s Place: Go With The Flow
“Stay positive!” “Be hopeful!” “Don’t worry, one of the new drugs will work!”
Friends, family members – even people we meet for the first time on the street – all try to help keep our spirits up. A bit over-the-top, sometimes, but I try and be appreciative and not blame them for their naïveté.
No matter how hard we try, it’s impossible to stay positive and hopeful all of the time. Someone who’s chronically ill is going to have a bad day. Especially since the majority of us aren’t only chronically ill, we’re terminal, battling a cancer that is unlikely to be cured in time.
Most people can’t, in good conscience, say that they are in such a situation. But I can. I’m a late-stage myeloma patient. My “unlikely to be cured in time” may not be too far away.
That said, I don’t think it does any of us any good to wallow in self pity or feel sorry for ourselves for too long. Sure, I think we’re entitled to get down about all the unwanted challenges we face: medical, financial, and emotional. By definition, having cancer isn’t any fun.
Given our unfortunate circumstances, it is unrealistic to expect us to stay “up” all the time. Living with multiple myeloma is a downer! It really is! But let’s stipulate that that’s a fact and move on. I’ll be darned if I’m going to mope around and waste what could be years of (mostly) good times!
So here’s my first tip: Take some time every other day or so and mourn your unfair lot in life. Then, try to set it aside and live the kindest, best, and most productive life you can for as long as you have left. If we don’t do that – if we can’t give back and help make the lives of others better – why are we even here? Why bother?
We have been given a rare opportunity. You and I understand what it’s like to be sick and dying. This perspective can help us help others much more effectively. We’re living it; what an incredible opportunity to be selfless. We can help and relate to others in a way even a nurse or doctor cannot.
My second tip: Go with the flow. Use emotional momentum, both positive and negative, to your advantage. Feeling down today? Go with it; allow yourself a half hour or so to wallow. Then, get out and take a walk, speak with a positive (not toxic) friend, try and do something to change the momentum.
Feeling good? Go with that, too. Reach out and do something positive. Embrace the hope of finding a new drug that will work for you in a myeloma research pipeline jammed with options. Do something “normal” folks would do. This is an even better time to exercise. Take that positive energy and rock and roll!
It’s much easier to ride a wave of emotion than it is to try and turn things around.
But be careful: If the down waves start to outnumber positive ones, you need to address that, with a close friend or maybe even a professional. I’m mixing my metaphors, but don’t allow yourself to start sinking down into negative quicksand. Remember shows like Lassie, where someone was caught in quicksand, slowly sinking with no hope in sight?
In all cases, help invariably came along; someone to extend a branch or piece of lumber for you to latch onto and help pull yourself out. The take-away message: Help is always available. Don’t wait too long until the sand rises up over your shoulders — even if you’re stubborn and don’t think you need it yet.
Summing things up, don’t be afraid to feel down and reflect about that once in a while. On the flip side, take one positive thought or feeling and build on it, creating a wave of positive emotion and action for as long as you can.
Happy New Year to all of my readers and friends. Who am I kidding? My readers are my friends!
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 .
I have multiple myeloma also. I'm lucky. The chemotherapy I'm taking seems to be working for me. Connecting with people who have the same cancer I have gives us all hope for the future.
God bless you,
Ken Hannon
Thanks for sharing your challenges so openly Pat. You are indeed leading the way for lots of us, and hearing what you do and feel helps us (me) a lot!
Keep on keeping on!
Much Aloha!
Tom
Happy new year Pat. Great advice - no one can be postivie all the time. Sometimes it is easiest go with the flow. I also think it is important to focus on things that we can do, not things that we used to do.
Happy New Year, Pat, and I hope everything goes better for you too! I get a lot out of reading what you write about, and appreciate all of the information you share. I have been reading your columns for years now, and been inspired by what you do! Thanks so much for that.
I agree that we have to rise above negativity for the most part, but I think it is easier when one is not in pain or taking a lot of medications. I am trying to 'set boundaries' around getting too down about anything really, since it isn't very helpful on a personal level.
Happy new Year Pat. Go with the flow is a very interesting observation. I too have my ups and downs, but with faith, family, and friends, I'm making it a brave and positive battle against MM.
Sesha - India
Glad to give everyone something to think about. Build on the positive and don't get mired down with negative baggage. Easy to say, not so easy to do. But a lot easier than trying to stay up and happy all of the time. Go with the flow on the way up, dig in those heels on the way down ...
Readers from India and Canada. Its an international brain trust!
Happy New Year Pat and fellow mm'ers. I still think it sounds better than wishing us an unhappy New Year. I also wish everybody to be able to live in the moment, to get at least the best out of good minutes, hours or days.
I am a lucky girl, not because I have mm, but because I am a born optimist. My average of four good hours a day, 22 months after transplant, are filled with creating memories. For example, my four children flew in with their partners from Amsterdam, France, and San Francisco and luckily the one with our first grandchild lives nearby. So we were a happy, complete family for ten days, making new memories. With everybody gone, I am left exhausted on our Wisconsin farm. (By the way, I am Dutch, as in from the Netherlands, but emigrated eight years ago to the US.) Even I experience that it is not always easy to find the switch for your moods. Then again, my life may be shorter then average, but I want it to be it a hell of a ride. I am used to live in receiving and giving unconditional love, and I will not go for less despite this awful unpredictable nauseating bone crunching mm.
May 2015 bring a lot of good moments to all my mm battle friends and their caregivers. Thanks for the column Pat, and do whatever brings you some relief even if that means being worried or crabby once in a while. We are not angels yet.
Hi Pat, I enjoy your column as we seem to have much the same views regarding this nasty, poisonous o.
I don't regard it as a blessing, and more of a curse, as it imposes restrictions on our plans and dreams. Particularly holidays. I had to ask if I can go to Disneyland Paris for 3 nights with my husband and my grandchildren. I promised Emilia 2.5. years ago to take her to the Castle prior to my diagnosis, and she is 5 now and asked when we were going.
Fortunately I am going to finish Velcade in a month and then a rest. My daughter is now arranging the trip!
So there we are, a moan about mm and a positive plan. I had a very bad experience with CTD -- so bad I didn't have a transplant. I am 71 now and have been much more myself on Velcade. I am on antidepressants, which help after the effect of the dex on my psyche. Now take prednisone. I am trying to make good memories for my grandchildren who live in England while I am in Scotland.
Pat, thank you very much for your kind words and thoughts and a Guid New Year tae yin and aw and mony may WE hae!!
Liz from Glasgow Bonnie Scotland
Pat,
Thank you for an insightful column. I have been reading your columns and books for years and I appreciate your honesty and openness about so many topics. I also love the way you sift through things for us, your readers and friends, leading to better understanding of drugs, treatment, etc
In my almost 4 years with mm, one of the most important things that I have learned is that being on this journey with others is so important for me. I really enjoy leading my support group in NM for that reason as well.
May 2015 bring us all more "ups" than "downs" , better health, joy and love.
Susan Benjamin, NM
I enjoyed reading your article! It has been two years after my SCT now and I am physically fine, but of course, that can change at any moment. I used to have days of depression and moments of despair, and I used to have bad thoughts going round and round. Encouraging myself was, and still is, mandatory, as imagining the worst is unbearable.
Now my mood is much more even. Occasionally I am able to relax; I can laugh and get distracted for a short time. It happened for instance during the vacations, when I played cards with my husband and our friends. But, overall, the disease is in the back of my mind at all times. I compare it to carrying a heavy backpack.
I used to enjoy strolling through antique markets, for instance. I still do, but now I walk around with my backpack of undefined anxiety, and it is not like before.
For a while, I saw a psychologist. Then I realized that, while one normally goes to a counsellor to deal with relationship issues, or maybe sad memories, the psychologist could not do anything about my feelings, aside from listening and being sympathetic. I remember asking her if there were some techniques to relax, and she said that talking about it with her would help. I instead arrived to the conclusion that dealing with issues that have nothing to do with cancer helps more than focusing on this depressing issue.
On the positive side, I embarked in a new exciting activity, drum lessons, and the fact that they started after my diagnosis is important. It means that something happening after March 2012 was pleasurable and meaningful. I like rehearsing and I especially like it now that I can begin to accompany some of my favorite songs. The music I like is particular; it is called symphonic metal or gothic.
Aside from that, the online discussion group I manage keeps me busy. It deals with sexist advertisement. In spite of all the progress in gender equality, in Italy women are portrayed only in two ways: as sexy, or as old style homemakers, and I find this offensive. Drums, group, swimming, my beloved husband and daughter, and the chores of everyday life fill my days and make it possible to go on, occasionally with some pleasure, as before.
Excellent article and a timely reminder that it is more than okay to think about the end stages of life, to think about what it means to have a terminal illness, to acknowledge that death is coming closer, and then get on with life as it is now. You rock, Pat!
God bless you, Pat, and all the people who make this such a great place to come to. Here's to a good 2015.
Nice article Pat.
Pat,
Great article. It really hits home for me. I have always been an optimistic person, and that is what everyone expects from me. So I keep up a good front, even though there are times that I am down. It reminds me of the saying "life sucks and then you die".
I have been in remission since my SCT in April 2013, but the feeling that MM is heavily hanging overhead just waiting to attack again makes it hard to be optimistic about the future.
Pat
Thank you for keeping it real, it's a great help. I know I can't be the great myeloma warrior that takes on the beast and slays it. It's not my style and it doesn't work. I find acknowledging the pain, grief and suffering helps. I just take it day by day
Pat,
Thank you for such a thought provoking column. This is a keeper. I'm going to print this out and read it when I get myself "stuck". I wish you and all the other MM'ers the best. Happy New Year!
Mary
I appreciate so many of you taking the time to share your thoughts with us. I find it uplifting to know so many from the myeloma community are exchanging ideas. Strength in numbers, right?
Good stuff, Pat. Thanks
I've thought a lot about all this "positive attitude" sturr and recognize only too well how it can add happiness to an otherwise dire situation. Then I chuckle when I recall that, throughout my professional life in hi-tech, my peers and sometimes upper management didn't quite value that personality trait at all. So I tried to "wordsmith" it a bit so they might better understand. I called it being a "Realist". I used the phrase so much, I think it became one of my strongest business skills ... seeing the real things that could make or break a deal and then focusing on those things. More importantly, I would also focus on building my Plan B ... just in case.
That strategy is working pretty well for me now that MM dominates a good deal of my thoughts. Of course, the Plan B stuff isn't always pretty or joyful, but, for me, it helps me think beyond the short term. That new med that keeps me dashing for the bathroom in the middle of the night, or the aches and pains that mysteriously appear, then re-appear. Long term may not be that hot, but who can really say anyone's long term will be any different than mine? MM has broadened my perspective about life ... its fairness and heartbreak. It's all reality, and I am glad for the chance to acknowledge it and deal with it head-on.
Thanks, Pat, for allowing me watch the examples you have set and strengthen my own view of the future.
I think you should write next month's column for me, Sue! That's what I've been trying to say...
Thank you for being so "real" Pat. I appreciate your wisdom and insight. I consider myself a realistic optimist" ... no more, no less. Ride the wave ... being real ... good advice, Pat.
On another note Pat, what is your opinion on a second ASCT for relapse? Are the new drugs just as effective as a second ASCT? It is 5 years since my diagnosis and 4 3/4 yrs since ASCT. Although I have done well, my numbers are slowly rising and I may need treatment soon. Any thoughts anyone?
Happy New Year Pat and Patti. My wish for you both is that you receive all you need for your well being in 2015.
Blessings.
Brenda, rule of thumb is second SCT lasts half as long as the first. If that were to be the case, you'd get another two years out of the second. No guarantee, but unlikely any of the new drugs would work that long for a relapsed patient. I would strongly consider it. A friend of mine mimics your results. Her second SCT went off without a hitch, and she's doing great a year later.
Brenda,
I went 6.5 years with no treatment after my first transplant. My kappa light chains rose very slowly since February, 2013, but this year started jumping up quicker, so lab tests went to monthly. Made the decision to go straight to another transplant. But, since the light chains decided in the last month to jump up a gear, I have just complete Cytoxan pulsing, am getting the growth factor shots, will collect stem cells this week, and transplant next week if all goes to plan. I have enough cells for this transplant in storage, but my doctor wants the option of a third transplant down the road because they seem to work well for now. Will I ever have that third transplant? Who knows ... probably not. But we are leaving that tool in the tool box.
I have been surprised how easy I tolerated the Cytoxan, well except for all the saline they pump in your IV to make sure it exits the body quickly. Never peed so much in my life. My kidneys liked the saline flush, best numbers ever for them now, normal numbers.
Since I really struggle with dex, this is an option that I had to consider. The plan is still up for tweaking, may add Velcade / dex for a few months after this transplant. Did it before last transplant.
I went thru the first auto with few problems. It will be interesting to see how this one goes, since my white / red cells have already been hit with the Cytoxan sledge hammer. Never boring, is it?
All outpatient. Rented a duplex, and that is working our really well. The kids even make sure we get Facetime with grandkids, dogs, and horses. Best medicine for recovery:)
A side note, there was a paper in Blood by Dr. Goertz and others that stated 10% of second auto give a longer PFS than the first. Anyone want to add a prayer that I make that 10%?
Hi, Pat!
I was so glad to read your column just this morning. Thank you! I think this is a perfect read for the new year. "Go with the flow" is
a great motto for everyone.
Sylvia
Hi Pat,
Well said!
The only thing I would like to add is to let bygones be bygones and focus on communicating / sharing with your near and dear ones on every aspect of your lives. This will help everybody involved.
My dad lost his battle with MM on 30-DEC-2014. He was surrounded by his family. While the grief is profound, we don't have any unfinished business. We were all very close to our Dad and we discussed everything under the sun. There were no thoughts left unsaid, no wishes unfulfilled. There were no conflicts to begin with, hence no unresolved issues there.
With time, I am sure the grief will pass and we will only have great memories of our Dad and the privilege of being his son/daughter/wife.
P.S. 2015 is going to be the year a cure for myeloma is going to be a routine over the counter affair! All the best to all members of the myeloma family. This is the year you are going to be MM free.
Best Regards,
Vijay
Brenda,
Just a quick update, FWIW. My kappa light chains dropped 80% ten days out from the Cytoxan pulsing. That should be a great setup for transplant next week.
Thank you, Jan and Pat, for your thoughts and considerations regarding a second transplant. I appreciate your quick response to my question.
I have some reading and thinking to do. I had decided not to do it for well thought out reasons, but am second guessing my original decision. No problem with the first, but terrible nausea and vomiting for weeks and weeks. However, I recovered well by 3 months.
All the best for 2015. Good luck Jan with your second transplant. Would like to know how it goes for you.
Pat, are you able to be in a trial for the anti-CD38 drug? Sounds like a new treatment approach from all the others. The other "newer" drugs seem to be newer or tweaked versions of older drugs ... like a 2015 Honda vs a 2010! Just a thought, and am sure you have explored this option if indeed it is an option at this time.
Blessings to you both.
I'm pulling for you, Jan. Why not? One out of ten shot ...
Suggestions that I try this or that clinical trial come up a lot. Unfortunately, I qualify for very few trials. My M-spike isn't high enough, and my light chain ratio is practically normal. We need to keep my spike low to minimize bone damage. Just my odd form of myeloma, I guess. So compassionate use is my best shot. Daratumumab or MLN9708 are both possibilities.
Hi Pat - Thanks for sharing again this month. I had my ASCT in March 2012 and went on maintenance therapy while I was up at Moffitt. I moved back north in 2013 and immediately my numbers started to rise. Now I'm completely out of remission.
My question is, did I come out of remission because I left Moffitt? You also moved from Moffitt and came out of remission. You have to admit, there was some magic there ... whatever will we do?
What a great article Pat! My husband had a positive attitude throughout the course of his disease and his example of embracing what was and moving on each day helps us cope now. Each day I think of how he lived with it and believe that he was showing us by his example how we can now cope with our loss. As you said, go with the flow, allow yourself to experience the waves of emotions that come, but then do something to change that momentum.
Peace to you and thank you for inspiring all of us.
Go back? Sorry your numbers are back up, Julie. We both moved north (you a lot farther north than me) so maybe that's it! Keep that sense of humor and best of luck in 2015!
"Go with the flow" was the advice of a very caring R.N., Christine, while I was confined to the hospital during my initial diagnosis and treatment. She encouraged me to relax and "go with the flow" following my transfer to the Oncology floor to begin chemotherapy. She explained to me how the delivery of chemotherapy and the offering of agents to assist with side effects had been closely studied until the hospital arrived at an "optimal" delivery system. She felt I would have a more comfortable ride and a better outcome if I was able to "relax and go with the flow" during my treatment.
But, as your article explains, I have also applied the phrase to a general outlook during my various levels of treatment and general life difficulties. Don't waste valuable energy trying to swim in the wrong direction. Stop and float for a while, just as you have discovered, and then get out of the water and walk in a different direction when you need to. Live in the moment, and collect good energy from your family and friends whenever possible. I also chuckled over Sue Walls' comments. I am a person who usually has a "Plan B" but not so much this time with MM.
So enjoy your articles, and thank you for taking time to share knowledge and wisdom to those who are not so far along on this journey. God bless you and your family.
Always easier said than done, right, Marcia! Thanks for exchanging tips. Worth a try!
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page