Me vs. MM: I Prefer The Old Normal
As cancer patients, how many times have we heard that our previous concept of normal is gone and we need to adjust to a "new normal"?
One of the first things my first doctor told me was that I would need to accept a new normal.
The health section of my local newspaper has a column each weekend written by a breast cancer survivor, and her article the week after I was diagnosed was about accepting the new normal.
I've found myself using the phrase to explain to people how I deal with the multitude of changes my life has gone through since I was diagnosed with cancer.
The problem, though, is I'm not ready to give up my old normal. I don't necessarily like the new normal. In fact, I hate a lot about the new normal.
I'll never consider it normal to have a port in my chest, to have poisons pumped into me, to self-inject myself, to suffer through side effects, to endure bone marrow biopsies, or to deal with the host of other nasty things we go through as a result of our disease.
I also don't want it to become normal to cancel vacations because funds are tight, to miss holiday dinners or birthday celebrations because I don't feel well, to give up activities I enjoy because my health may not be as robust as it once was, or to lose the spontaneity in life because everything needs to be planned around my cancer schedule.
I spent over 50 years establishing my "old normal" and for the most part, I happen to like it. I don't see how someone can be expected to give up that much time in a matter of months or a few years and truly be comfortable.
It's like being right-handed all your life and then suddenly trying to be left-handed. No matter how much you try, you'll never do as well left-handed, and things will constantly happen that remind you how much you wish you were still right-handed.
If I accept the new normal, I feel like I'm giving in to the cancer. Every time I concede a change in my life due to this disease, it feels like I've lost another battle in this war.
Having said all this, I do realize there are some things that cannot help but change, and the idea of a new normal can be a useful mechanism for coping with the fear, uncertainty, and chaos that comes with the diagnosis of multiple myeloma.
In fact, I recently read a couple of articles, including one by Arnold Goodman for the Myeloma Beacon (Arnie’s Rebounding World: The Idea Of the New Normal), that do a nice job of advocating the merits of the new normal.
I'm just not ready to jump on the bandwagon.
I'll make the two-day trip for treatment every other week, and I'll take my fistful of drugs each day, because these are necessary to combat the disease. But otherwise, I'm conceding ground grudgingly.
I believe it's this attitude, along with the excellent treatment I've been receiving, that have allowed me to continue biking and weight lifting and, most recently, resume playing hockey.
Obviously, not everyone is this fortunate. There's no question this disease takes a real toll, and as it progresses, there are things we are physically unable to do anymore. How much of the old normal can be retained will always be subject to one's health and common sense.
For me, the trick is finding the right balance - trying to retain as much of my old normal while not taking unnecessary risk.
I'm going to battle multiple myeloma to my last breath, and I'm going to hang on to as much of my old normal for as long as I can.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
.
When my husband would announce that he was "taking my life back!" I would remind him, that we didn't have to take it all back! There was a lot about our old life worth leaving behind. We just didn't know it at the time. Keeping and doing things because they were familiar to us. With MM we felt stripped of everything.
We chose to look at the rebuilding of our life as an adventure and it has been a fun experience for us. It took us awhile to get there, admittedly. Good luck on finding your balance.
Hi Kevin, It speaks volumes about you and the other columnists who are right now undergoing active treatments, that you are able to chronicle it and have the presence of mind to share your thoughts. Your new normal, old normal and all in between will merge into what is do-able in any given time frame.
I know people with other cancers too. Two male friends, who have been battling away against prostate cancer, each for more than five years now, are very keen cyclists and exercisers....I usually see them in their exercise wear at the gym! (I don't see them cycling, but know that they do!) They didn't stop exercising after the dx, in fact, they seemed to take it as a direct challenge to do as much exercise as possible to stay fit. That sort of attitude was an inspiration to me when I was trying to figure out how to approach being bumped out of my previous 'normal'. So what you are doing is probably just right for you at this time.
Hi Kevin: Thanks for your insights. Trying to regain the old normal, physically at least, is vitally important. It is so easy to succumb to all the crap we have to go through and let the exercise (games) go. I played my last hockey game a few years back and that required a transition to my pre myeloma norm. Since my last set of treatments I have been struggling mightily to regain my old form. I will never let myself retreat so far again.
Thank you for the article Kevin. I am brand new to treatment. I was diagnosed January 27 2012. I am finishing my first round of 21 days of Revlimid on Saturday. 80 mg of Dex weekly and my first Zometa IV coming up on the 21st. I'm grateful for these blogs. it helps so much to see what my fellow travelers are doing. I'm going to give my hand to writing a column too. Thank you again and i'm glad you shared.
Thanks Kevin for a great article, writing my very thoughts! I have tried to work with and accept my "new normal" with a fair amount of success and normalcy. I am about 20months post stem cell transplant and continuing on 5mg of Revlimid as maintenance therapy until my 2yr SCT anniversary. I am though finding fatigue and breathlessness my worst enemy as I try to be who I used to be (personally and professionally) ... I am working on accepting "less is more" for my "new normal" and trying to limit myself in ways I still find difficult to do. Headed to cardiology tomorrow to see what's up. I don't think I allowed myself to really fully recover, as I jumped back into work and life perhaps to soon. Thanks for your article!
Hi Kevin!
Nice write up.
I feel what you mean especially about cancer eroding areas and diminishing quality of life.
I suppose I use different terms vs. norm or new norm. I try to see it as evolving to a different point. Sorta like how we evolve from being teens and young adults to 40 hour week jobs. Each stage presents it's own set of problems. The only problem with this perspective is that typically we see life stretching before us with new horizons and positive experiences to come and savor. I think that is the aspect that cancer changes which is why I fight valiantly to create new things and positive experiences to try that I didn't before MM struck.
I not only refuse to let cancer suck the joy out of the life I had, but when it imposes itself with onerous tests and diminished activities, I come up with ideas of other things to do and see as soon as I am on my feet. I push myself to go to them even if it is only to sit on a bench and look at the cherry blossoms bloom. I go to the theatre to see musicians and dancers and I even have ventured to take tango lessons. All because I am 'one upping' cancer. You know, I say to myself, you make me fatigued and I couldn't go to family dinner..but AHA! I beat you tonight..I am out doin the Tango!! That brings me joy and I feel I am winning and not the MM. I make lists of new joys to live and explore.
The new norm view can create confusion about known norms. Speaking of cherry blossoms, for instance, I have always had bad allergies. Well this past week, I have had stuffy nose, tired, sleepy, throbbing headache...since I have MM and am on steroids I thought I had caught a terrible cold. Well, it finally dawned on me ..no stoopid, these are your allergies. ..remember last year cherry blossom season,,just wiped you out? I was like OMG...I immeadiately took some Zyrtec and felt 100% better.
Which is my way of saying ..had I not accepted the 'new norm' of cancer...I would known right off the bat that cherry blossoms wreck havoc on my allergies.
Which is a long way of saying, I'm withcha, eff new norms!!
WELL SAID and my sentiments EXACTLY!! After nearly 8 years of fighting I'm still not letting go of normal and 'new normal' is a dirty phrase to me. Normal to me is the normal I think I would have been at this age without MM. That is what I strive for every single day and hope I never stop trying for it. And by the way, I'm not that far off!
Lori,
My wife and I have also taken the opportunity to shed some baggage from our old normal. However, I want to avoid adding abnormal things to our life and considering them normal.
Nancy,
I think I'm of similar mindset as your two friends. I've always had a somewhat rebellious spirit (I was a PITA for a lot of teachers), so I also look at it as a challenge and like to stick it to MM any way I can.
Gary,
I think that’s the type of spirit you need – good luck regaining the old form. It can be so easy to let up when you're constantly battling this disease. I quite often find myself trying to talk me out of exercising, and it's at those times I tell myself everything I do now to stay healthy works to extend the time I have and increases my chances for being around when this disease is no longer considered terminal.
Ed,
So sorry that you've had to join the MM community. I hope your treatment is successful, and I'm looking forward to reading your column.
Julie,
I hope you can find the source for your fatigue and regain some of your old normal. These type of issues, and how they can limit us, are what prompted the "subject to one’s health and common sense" statement in my column.
suzierose,
I can relate to the idea of evolving as the disease progresses. And I like your perspective of finding positive alternatives to replace some of the old normal instead of accepting the abnormalities the come with the cancer as the new normal.
Vicki,
Eight years, and still have the attitude – I hope I'm as successful as you've been. I may be writing the column, but it's responses like your that motivate me. Thanks.
Get new Myeloma Beacon articles by email.