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Pat’s Place: Multiple Myeloma Survivors Need To Take Regular “Myeloma Breaks”

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Published: Feb 2, 2012 2:02 pm

Over the past month, I have once again experienced a wide variety of multiple myeloma-related events that I have heard about over the years.

One thing is for sure:  I don’t recover from sicknesses nearly as well as I used to before my autologous stem cell transplant in July.

Three weeks ago I experienced the worst cold I have had in a decade.  I was able to fight it off in a week or so, but then I was hospitalized this weekend with neutropenia (low white blood cell counts) and a fever of 102.4 degrees.

I’m home and feeling much better now.  But apparently a lower gastrointestinal bug and my last Velcade (bortezomib) infusion didn’t mix.

My old immune system was so tough.  Ten years as a teacher and coach and a healthy lifestyle meant I literally never got sick.

Of course, these are all just minor inconveniences, which would be much easier to take if my transplant had worked…

Which brings me to the point of this month’s column.

I’m learning that living with multiple myeloma is a lot tougher mentally than physically.

I can put up with nurses who can’t start IVs, weekend hospital stays, and bad colds.  But it’s the mental aspect of all of this that is even more demanding.

Keeping one’s head on straight should be something that we all work on daily.

Whether you chose yoga, long walks along a river, playing bridge with friends, or a hobby like photography, we all need to step back, take a deep breath, and immerse ourselves in something other than our cancer.

As readers constantly try to remind me, we all need to take a “myeloma break” regularly or this thing will eat us up and bring us down.

And I was down a bit this weekend.  After a bit of self-reflection, it didn’t take me long to realize that my failed transplant and my myeloma’s growing resistance to Revlimid (lenalidomide) has left me feeling vulnerable.

Talking about it helps.  But I’m not really comfortable discussing this with my wife and caregiver, Pattie.  It may be a mistake to try and protect her, but she doesn’t need to deal with all of this.  God, I worry so much about her and what she will do after I’m gone.

I’m guessing many of you also keep things from your caregivers on occasion.  Another shared experience that I will likely write about soon.

Thanks for listening!  I feel so much better!

Until next month, feel good and keep smiling!  Pat

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.

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

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

  • Lori Puente said:

    So true Pat. So true. We need to take a break from it, or, have things in our lives that we do with others that are not connected to myeloma!

    Take those breaks. Patti’s pretty amazing and so are you.

  • Sarah Gorrell said:

    Pat: Sorry you’re experiencing all of this. I’m sure my honey doesn’t tell me everything he feels, nor do I (as his caregiver) tell him everything I feel (and read about).

    This “new normal”, whether still in treatment or in some phase of remission/response, is such a drastic change for everyone.

    I’m also glad that your cold didn’t become Bronchitis or Pneumonia. Bob has had both this winter season, and neither were easy to get over.

    Now….YOU keep smiling (and feel better, too!)

  • Julia Munson said:

    Pat,

    I really can identify with your statement: “God, I worry so much about her and what she will do after I’m gone.” This was a really big one for me. After my ST, when I was as weak as I’ve ever been, I found myself often dissolving in tears thinking, not about my death, but how it would affect those left behind – especially my husband. Prayer is where I go when I’m stumped, and so I did. My answer came to me so simply, “This is my job, not yours!”

    Sounds to simple, and maybe even cold, but it saved the day for me. Boy, there sure is nothing I can do about it. I’m glad He is there and will be there for them.

    Hang in there partner, Julia

  • Julia Munson said:

    P.S.

    Your immunity will improve. My first year was one antibiotic after another. I must have take 6 – 10 rounds, along with routine penicillin. I worried about taking so many. My Mayo doc told me not to worry – they are short course and will protect me from pneumonia and other severe infections. He gave the option of gamma-globulin, but I decided to give it some time, and sure enough, entering my second year, I have stayed well much longer and consequently fewer antibiotics. Only one round in the first 6 months of the second year.

    Julia

  • terryl1 said:

    Good column, Pat. It’s a blessing when a day or so goes by and I actually forget about this $#&*^@ condition. I have two young boys and I took one for a sleep over with his Boy Scout troop at our aquarium. Amidst the sharks and sting rays, I only saw my son’s happy face glowing and not a thought about myeloma in any way, shape or form! There are times with my wife that I have actually faked a positive attitude and smile and then retired to the bathroom for a good cry. I was always a planner for the future–saving for the 401K, college savings plans for the kids, vacations, etc. It is hard to train myself to just live incrementally and focus on the moment–to be a little bit of a procrastinator and not think about tomorrow or next month’s labs, etc. Well, we all know the drill…Terry L.

  • Nancy S. said:

    Hi Pat and Pattie…glad to hear that you are home again. Hope you can get into some interesting hobby or a good book, or just relaxing and get your mind off of any worries that you may have. That’s one really nice thing about the Beacon site..it is a good outlet for folks who want to communicate about Myeloma.

  • Bruce Chastine said:

    Pat,

    Your book “Living with Cancer” has been a real blessing for me to see how others like you are fairing with MM. I also read your blog regularly and pay attention to what you write and others write on the blog. In your book, you said that the people you know who made five years in CR, relapsed in year 6 or 7. I was diagnosed in 2005 and went through tandem transplants at Duke in 2006 and have been in CR from then until now. In the last few weeks I developed a knot on my upper chest. When it did not go away, I went to my internist and she scheduled a CT Scan. Well guess what, I have active MM in my sternum which is what is causing my chest pain.
    I have met with my radiation oncologist and he is talking about radiation for a few days up to two weeks and that should kill it. I am still waiting for the results of the free lite assay, whole body scans, 24 hour collection and all of the other standard testing that is done. Hopefully all of the results will be back before my visit to Duke next week for my annual review. If all of my numbers come back normal I guess I will still be in remission even though I have active MM in my sternum. I’ll get those answers next week. In the meantime I have been blessed with four wonderful grandchildren that have all been born since I learned I had MM. I thank my Lord and Saviour every day for the time he has already given me. Moving forward, I will do what you and others are doing. The hardest thing for me is also the spouse thing. This is kind of like when I was in Vietnam, everybody must move on with THEIR lives while we are stuck where we were.

    Keep your spirits up, this too will pass. I agree that you should find a hobby or anything else that will distract you from MM. Keep up your good work as those of us who have found your blog are truly blessed.

  • Kent Bradley said:

    Damn, Pat. I don’t know how to experience a day without thinking about MM. Even though I’m symptom free and smoldering. My best effort is NOT to wallow in my sickness but to offer prayers and hopes and support to those who are having a tougher time than I. Keep up the great writing and all of the other things you do to support this community. Your efforts are greatly appreciated!

  • Kevin J said:

    Pat,
    In my last column that also talked about the psychological side of this disease, there were a lot of good suggestions for taking a “myleoma break” as you phrase it and I’ve started trying to incorporate some of them. Two that have already had an impact for me are 1) my wife and I are making sure we do something fun each weekend, and 2) setting aside a fixed “myeloma time” each day then trying to keep the rest of the day myeloma free (which is tougher, but I’m making progress). It’s remarkable how even a couple of some changes have improved my spirits (the fact that West Michigan temps have been hovering near forty and we don’t have 2 feet of snow on the ground doesn’t hurt either).

  • Pat Killingsworth (author) said:

    Thanks Lori and Sarah. Sorry that Bob had trouble with bronchitis…
    Julie, sound like we have gone through a lot of similar things. You too, Kent. Wow, Terry. Myeloma and two young boys. Guess no one ever said life was fair. Bruce, I’ve had a lesion in my sternum. Painful! Kent, I can’t go an hour without thinking about mm! I will check-out your column and review those tips, Kevin. Thank you!

    This is the part I miss about only writing my column monthly. Hearing from all of my myeloma friends. We all share so much. Thanks for taking the time to comment, everyone. You all made my day!

  • John Fabian said:

    I believe all the prescriptions and medications that a person takes for their treatment has has much an effect on a patient has in its own way as much an effect on a person as the Myeloma itself. When I was going thru my twice weekly VRD treatment via IV I went thru a myriad of symptoms including depression. Dealing with the reality of my situation on top of it only compounded things.

    The Internet, especially Facebook, gave me a needed distraction and let me stay in contact with family and friends as well as current events so I didn’t feel out of touch. Blogging let me keep everyone in touch with my situation as well. It was important to feel as though I was still a part of society and not ostracized because of my disease.

    My wife and I also would take a weekend getaway every other month during that time. I can’t emphasize enough to take care of yourself mentally, emotionally and spiritually when the opportunity presents itself in your treatment.

  • Pat Killingsworth (author) said:

    Great advice, John. Thank you!

  • Debi said:

    Hi Pat,
    We sympathize with what you are going through. My husband is a year and 1/2 post tandem transplants, and his immunity is continually suppressed by the VRD maintenance chemo, (Revlimid keeps those whites and platelets down), but after the first year, his resistance to infections has been much better. He got 2 very nasty colds and was on antibiotics, in the first year, but has thankfully been healthy ever since. Part of it, I am sure is our habits of the germ-phobic “new normal” that we live by now, but I feel that even though his white count hovers in and out of being neutropenic, his ability to fight off infections is increasing, as his immune system becomes more robust. We pray that you too, will find that as your immune system grows “older” you will gain greater resistance to sickness.
    As you mentioned, the mental part can be one of the most difficult challenges to deal with. It is very easy to submit to fears about the future, worries about loved ones, and feeling sorry for one’s self. We have found even in the darkest and scariest days of treatment, our source of strength and comfort is in God. Through our faith in Him, we gain a new perspective, renewed courage, and a celebration of joy for every day we have together. We find our Myeloma breaks in being thankful for the simplest blessings we have around us every day….a beautiful sunset, a walk together with our dogs, playing with our grandkids (we have 8 of them!). I will agree that having Myeloma stinks big time, but our appreciation of life is richer, and our lives have been blessed more than we could have guessed.
    Our prayers will continue to be with you and your family. Thanks for always sharing from your heart, and blessing so many lives.
    Debi

  • itzhak cohen said:

    Hi Pat
    When I read your columns i feel as if it is me writing it.My worries are all about my family.My wife and my childrens . They are 34,31 and also my four grandchildrens.I wish i could take a break from my myeloma.I can not.
    Itzhak

  • Pat Killingsworth (author) said:

    We are all part of a special club, Itzhak–whether we want to be or not. We share so much. That’s why hearing from people like me helps so much. Like you, I can’t take a break from myeloma. But this commonality helps make it a lot better!

  • Art said:

    Great Article Pat
    I was at the NIH this week to see Dr Landgren and although I am borderline Smoldering/Early Myeloma ( i will know more after some more test results) I was certainly brought back to reality when I saw many others that were obviously in much worse shape than me. Although being alone there and dealing with everything brought its own challenges I tried to focus on how lucky I was compared to others. It’s tough to get my mind off of all of this. But when I do and later after I realize that I did it feels good.
    Thanks for sharing!

  • Monica said:

    Pat, you wife will be fine. It may take a year or longer, but she will be fine. I am sure she is worried about how her life will be “after”, just like I do. It looks bleak for us. No one to joke around with, or tell your troubles to. Our best friend will be gone. But life does go on – or so I’ve been told. My husband began “getting things ready” last fall. It was just about my undoing. It hurt to know he thought he may not be around long. The snowblower and generator did seem to provide a mild winter though! So that was good. I recently read a pamphlet by Zig Ziglar “I Know You Are Hurting”. It had a statement “Ask God to put someone in your life to create a necessity for shifting gears from grief to gratitude.” I nearly cried when I realized that was why we are getting our first grandchild this summer – someone to focus on. (My son and daughter-in-law did not want children…guess God thought I needed one!) God always comes through for us. We all just have to believe, regardless of how painful the process is.

  • nancy s said:

    Two years ago I put all my financial matters in order, etc., because I was very worried that I might not make it through the upcoming treatments, or that they might not work. Fortunately though, such was not the case. I noticed sometimes during treatment that when I felt the lousiest, was actually when my blood counts or other markers were improving! Go figure. I have tried to simplify my life since my priorities have shifted too.

  • Sherri Parker said:

    Yes, we all go through a lot of the same feelings…glad we have places like this to vent. It is nice to have some one put into words what I am feeling sometimes, but can’t really do because the words don’t come so easily now(chemo-brain)

  • Pat Killingsworth (author) said:

    Hope your myeloma continues to stay inactive, Art! Try not to worry…

    Of course you are right, Monica. Doesn’t mean it isn’t painful for me to think about how difficult things will be for her.

    Nancy and Sherri-
    Yes, we all have so much in common. Very comforting, at least for me. Thank you for being there when I need you and other readers!

  • dulmar said:

    I too was diagnosed with Myeloma recently, June 30 of last year. Since then all I worry about is what my next blood work is going to show, and just live day to day. One thing I would like to share with you all is we all have this disease, and it doesn’t leave our minds. The only one who knows what I go through deeply is God first, and my kids (who are not old enough to bear this burden the way a spouse could bear it with me).

    And Pat, you’re right there is not just a physical aspect with MM, but a mental and emotional one which at times is much harder. I will advise you all though to look into ways to support your immune system and fight the cancer naturally along with the chemotherapy. Look into Budwig diet, gluten-free diet, curcumin and eating organic well balanced food daily, it has really helped me stay healthy. May God be with us in this difficult fight and forgive our sins. Amen.

  • Pat Killingsworth (author) said:

    Diet and prayer… A powerful combination!

  • David Keegan said:

    It is an odd thing. We myeloma survivors have an uncanny sympatico. MM does play mind games on us all. These columns help us deal with these issues. I just had my 1 year “New Birthday” consult with my Transplant Doctor on Jan 30th. He presented me with the “all clear” sign that I won’t have to see him again unless (or until) I need another transplant.

    One thing he did present to me was a list of all the immunizations shots I have to get again. You know all the ones we had as kids. It makes sense since I have a “new immune” system. Now I have to avoid kids with the mumps and measles chicken pox etc…talk about mind games.

    No worries though, at the moment all is good for me. Wait…I just sneezed… is my myeloma coming back…no I am just allergic to work…:-)

    Dave
    “Life isn’t waiting for the storm to pass, it is learning to dance in the rain”

  • Pat Killingsworth (author) said:

    Thanks for sharing your thoughts, David! Lots of ways to spin this stuff…

  • Linda Kokel said:

    Dear Pat,
    I’m sorry things have been so difficult.
    I truly look forward to your posts.
    Linda

  • Pat Killingsworth (author) said:

    Thanks so much, Linda! But I expect things to be difficult. I like to share the smallest of details to help readers feel like they aren’t alone in all of this… But I’m OK. I can spin it either way!

  • Richard Lee said:

    Well said Pat and I think we all stuggle with trying to step out of the Myeloma patients shoes. I have getting back into doing hobbies and reading my westerns etc. to get my mind off of what is next, how I am feeling if I am going to have a good day or bad day. It does help me in between going the docotrs and the cancer center which puts back into the Myemloma patients shoes. Thanks for all your good works and keep sharing it helps me and others I am sure.

  • Pat Killingsworth (author) said:

    Love the dog pic! Yes! So important not to forget to take time to do the things we enjoy… Thanks for reminding me!

  • Lynda Sanders said:

    I was diagnosed with MM August 2010. It took nine months for someone to finally discover what was causing all of my pin. That was very exasperating. Went to the hospital on two different occasions and sent home. The last time I couldn’t hold back anymore and broke down and cried my heart out. I told the hospital staff that they were missing something and had not found out my real problem yet. My daughter-in-law suggested a CT scan and a bone scan and the Dr. also included a bone marrow biopsy which uncovered the MM. My back was severly affected by the MM to the point I couldn’t even walk. After a series of other events I was scheduled for a stem cell biopsy at the Emory University in Atlanta, Ga Jan. 2012. It was truly difficult but successful, before the transplant I was a stage 3 and six months after the transplant I was in remission. I recently went back to Emory for my six months follow up treatment which included a bone marrow biopsy, blood work up , and a CT scan. Everything came back good and that I was in full remission. I will have to take velcade and zometa for the rest of my life (at least until the Lord Jesus) sends me a complete healing. One thing that weighs on my mind and I haven’t had the courage to call the Dr. in Atlanta and ask him about it is on one of my reports it says I have multiple lesions on my skull I sure would like to know if that is going to have any adverse effects on me in the coming days. Also I have pain across the center of my shoulder blades. I was in a car wreck in 2008 and suffered a broken sternum, so I wonder if this could be opening a door for MM to attack me in that area. My worries are really few as far as death goes. I know my husband well enough that after a period of grieving he will be fine. My son is in his forties and is strong emotionally so I know he will recoup with his strong faith in God. My grandchildren and daughter in law are all close to God and will pull on His strength during that time too. Some things I’ve never heard mentioned are progonosis and what to expect when your time is nearing. Is it painful , what are the symtoms that that time is drawing close? I know I’m rambling now … but I do worry about what will happen to my dogs. Prior to my diagnosis I did foster care for rat terriers.I now own four. There are no real dog lovers in my family , but I believe two of them would be cared for by my sister. Sounds a little foolish I guess (if you’re not into dogs) but for me it’s a very important thing. Don’t know how much of this you will be able to publish but thanks for listening. Lynda in Georgia

  • Pat Killingsworth (author) said:

    Lynda-
    What a frustrating time for you and your family! It’s only a guess, but did you ever think that your myeloma was already active in your sternum at the time of your accident–and that’s the reason it broke where it did? Who knows how long most of us had our cancer before someone figured it out…

    I wish you all the best! So glad you were able to share your story with me and our readers!

  • Kate said:

    Lynda,
    I can absolutely relateto your diagnosis problems. I was diagnosed as a stage 3 in December 2010, after spending years trying to find out what was causing the pain in my back. It progressed until I couldn’t walk. Finally a dear friend came to visit and insisted on taking me to the er. That’s when I was diagnosed (shock!!!) and I felt my life was over. The regimen of chemo helped, but in the meantimeI developed 3 hernias in my abdominal area; very painful. My oncologist cut back on the chemo so I would have a chance to heal, but it’s been 1.5 months and I’m barely better. Plus I imagine the mm racing all over my body, due to lack of chemo.
    Another problem, and this doesn’t seem to be discussed much, is I have major depression. Not necessarily from the cancer; I’ve pretty much had it all my adult life. They say “attitude” helps, well, with my state of mind I don’t think I have a chance. Sometimes I enjoy the thought of dying; mostly it scares me.
    Thank you to anyone who has read this rant. I hate to burden my husband with it.