Pat’s Place: What Happened To My Organizational Skills And Focus?
I returned home from my stem cell transplant late last month. At first, my progress was uneven and a bit frustrating. I would feel a bit better one day, only to backslide and lose ground the next.
But my third week home has been better. My energy levels are rising, my unsettled stomach is improving, and I am able to perform more than one physical task without rest.
My wife has been taking an extra day off work each week to help do things around the house. It’s raining today—a perfect day to organize our home and office.
While I was doing some filing, Pattie heard me comment to myself how I couldn’t find anything and needed to get more organized.
“You are one of the most organized people I know,” she remarked. “I think you are way too hard on yourself.”
Pattie went on to explain how she noticed a lack of focus for months following her chemotherapy ten years ago for ovarian cancer. She even checked her daily journal from those days to confirm how she felt.
I don’t keep a daily journal. But my blogs and this column about living with multiple myeloma should serve the same purpose for me in the future.
What cognitive symptoms did my high-dose chemotherapy and long transplant ordeal cause?
The most noticeable is my lack of focus. Like a third grader the week before summer vacation, I just can’t seem to stay on task. I’m misplacing things regularly.
The organized chaos that was my office now leaves me befuddled. The stacks of folders and medical bills look like the Rocky Mountains to me right now. Even anticipating the most basic projects leaves me apprehensive and intimidated.
Hopefully this will improve with time. I just need to be patient—never one of my strengths—even before my diagnosis or subsequent therapy.
At least I can still focus enough to write! Maybe all is not lost.
Feel good and keep smiling! Pat
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Pat, I had a stem cell transplant in Dec 2009 and returned to work half-time on Jan 2, 2010 and full-time by March. I noticed the same thing with attention and focus but that soon returned. Since then it has been relatively uneventful but do need weekly testosterone injections for the fatigue.
I started a blog but decided that MM took up too much of my time so pretty much stopped!
My husband is about to go for a transplant and we both work full time, it sounds like just your wife. Would you mind me asking how much time from work did she need to take the first 2 weeks while you were in the hospital setting? I am saving up my vacation but not sure how to "budget" it. Also, I am assuming you went on disability. Did you plan it ahead of time?
Appreciate your help. Ella, eflikop@yahoo.com
Pat,
I have so appreciated your columns, particularly this last month. I am preparing for my stem cell transplant at Dana-Farber. Stem cell harvesting on Tuesday and maybe Wednesday next week; melphalan starts the following Sunday, August 21st; stem cells come back to me on the 23rd. I have a big few weeks ahead of me and with the help of your column I feel more prepared the process and the weeks to come.
Thanks so much for sharing! - Susan
Pat:
I'm queued up for transplant in October. I'm already disorganized. I could be really screwed. Hope you are on the recovery road and I appreciate your candid account of the procedure. Wish I could just Rip Van Winkle through it.
Ed
As always, Pat, I thank you for sharing. You are really helping us get prepared for my husband’s stem cell transplant. Also, the comments in response to your columns are very useful. Cheryl
I should learn to check comments more often the afternoon my column comes out. I try to respond to everyone's comments whenever possible, so here goes...
Kevin, I'm glad you are doing so well. Yes! This can all be very time consuming.
Ella, My wife worked Monday/Wednesday/Friday during my first two weeks in the BMT hospital wing. Since I had care 24/7 for first 16 days, that worked great. Then I had friends and family help with my outpatient care. She was able to keep the same schedule except for a few days. I was OK with it. I think it was hard on her. Does that help? Email me if you like anytime and we can talk scheduling.
Susan, don't forget to suck on ice before, during and after your melphalan. The more the better for all two days at least. Really helps preventing mouth sores and reduces severity of sore throat. I think everyone gets one of those, but mine wasn't too bad. Good luck!
Ed, they pretty much take care of everything. But try and line up those caregivers for outpatient days. Tell everyone to be flexible--that's the hardest part--the schedule needs to be loose.
Thanks for reading, Cheryl! Glad to help- Pat
While I remain in complete remission, this is the most persistent side effect I deal with since my SCT in May 2010. And, my job requires concentration and attention to detail. I keep a calendar with everything on it to help me remember even the most trivial details. But, to write the detailed pieces our clients businesses require takes an incredible effort.
A study, recently published, with post-transplant myeloma patients showed this side effect persisted for 5 years. Oh my!
Pat, chemo-brain. It took me a couple of years to feel like I put it behind me. Then again how do I tell senior moments from chemo-brain? Linda
Hard to tell, isn't it? Difference is chemo brain gets better with time once you are off medication. Senior brain only gets worse. What do you think? Are you laughing? Pat
Hey, Pat: My thoughts were very scattered after my first two rounds of induction therapy in late 2008 - early 2009. It got a bit worse through my Feb 2009 SCT and the subsequent SCT in May 2009. I noticed that my faculties started to improve through the two rounds of consolidation therapy that ended in October 2009. This November marks my my two year anniversary of maintenance (weekly VDR) - one more year to go. Long story short- I still don't feel 'sharp' and on top of my game. While my QOL is decent, I'm still looking for the energy, the drive and that sharpness to come back. I have MM friends whom say that after the maintenance period (and its chemical onslaught) ends, things get better. In the meantime I'll continue to be a patient patient. Thanks for keeping us posted on your progress. Sean
Hey, guys, we're alive!!
Kidding aside, I had a real problem with retarded thought while my MM was active. I actually thought I might have Alzheimers. I really feel my thought processes are much improved after treatment and SCT. I'm older though, and can use "senior moments" as excuses for forgetting, goofing up, and name forgetting problems.
I will have to say, however, that I have little memory of details of my SCT month at Mayo.
Julia
It doesn't help that you have had to endure consolidation therapy and a tandem transplant, Sean. I'm surprised you can write or think clearly at all! I'm impressed...
Julia-
Parts of my SCT experience are already cloudy. I'm only 55, so harder to blame it on "senior moments." Funny how I remember certain rituals or events during my SCT clearly, while I barely remember others. For example, my brother-in-law visited me twice when I was an outpatient. I couldn't remember either visit!
Hi Pat
I just had my first SCT at the Mater Private Hospital in Brisbane Australia yesterday
I'm 39 and was wondering how long the chemotherapy side effects took to kick in
I'm currently feeling some nausea and loss of appetite but overall not feeling too bad
Thanks
Paul
Paul,
Nausea and the "other end" problem start after a couple days. Take all the nausea meds you are allowed. This is the best advice I can give. Hang in there, it will get better in a couple weeks. After a month I began to get my appetite back and feel better. From then on you just get better and better.
Julia
It is starting to get a bit better, Julia. A lot of things still don't taste as good as they did, though- Pat
Going through all the induction chemo, SCT and maintenance chemotherapy took almost two years for me and my family. The family and friends were super supportive throughout this time, which meant a lot! I did manage to keep up with what I really had to do, such as a book keeping commitment, but needed extra help at home and had to drop out of some activities such as singing in a choir for a whole year. Finally, when I was done the maintenance chemo, my blood tests returned to normal, started to feel a whole lot better and have had a pretty good summer this year. Of course, we learned a lot about MM, how to sort of manage it, and how the treatments were meant to help us. Now, am grateful for all the medical and emotional support given and hoping to carry on again much as before! Hoping all goes well for you, Pat, and the other patients. By the way, for nausea, as well as anti-nausea meds, did you know that ginger is good for that too...ginger ale (Canada Dry!), ginger drops or ginger marmalade...its a nice treat and settles your stomach a bit too!
Great Tip, Nancy! Never thought about ginger marmalade...
So helpful -- my partner is on Day 8 of Neupogen injections following ICE chemo last week.....stem cell harvest scheduled for this Wednesday (assuming counts are up enough),and she goes into the Brigham on the 23d to begin the high dose chemo ..... it is a different regimen, I believe, since she has lymphoma. Four days of high-dose chemo, a rest day, and then she gets her stem cells back on the 29th (assuming the schedule holds).
As caregiver, and also primary breadwinner and single mom of three, my work schedule is challenging. I was thinking I would be there for the first day of HDC, then come evenings.....be there the day of transfusion of the stem cells, and continue to come most evenings --- working full time days while she is in the hospital.
I am not sure what will be needed when she comes home...? Should I plan on working from home for a couple of weeks? Any advice or experience around this would be so helpful!
Jen
Jen-
If you can work from home the first few days, that should give you a feel for what to do. My wife and caregiver, Pattie, worked every other day. I would have been OK. But it was great having her around! Good luck- Pat