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Lung cancer

Awesome News, Patrick!

When I first began to write about my experiences as an MS Caregiver, Patrick Leer was there to share an encouraging word.  Since his first comment on my blog, I have followed his journey in caregiving for his wife, Patti, whose MS has progressed to the point that she is in a long-term care facility ( http://caregivinglyyours.blogspot.com/).  However, not having her at home has not lessened his participation in caring for her.  His dedication to her well-being has been constant and remarkable.  Now Patrick is the one who needs care and support.  Patrick was diagnosed last year with Lung Cancer and a few months ago discovered it had spread to his brain (http://lung-cancer-survivor.blogspot.com/).  After intensive treatment, I am thrilled to share that the brain metastasis is no longer showing on the MRI.  He continues to fight for victory over his lung metastasis but I have no doubt that he will beat that demon as well.  Way to go, Patrick!!  I’m pulling for ya!
Since I have heard about Patrick’s new challenges with his own health, my own personal health and future have been on my mind.  I’m pleased to say that a recent medical appointment indicates I’m doing well other than for on-going struggles with arthritis and the associated pain. It’s odd though how when something starts needling your brain, it seems to come up from multiple sources…
At my last caregiver’s support group at church, one of the participants challenged us to create our own personal mission statement along with a vision for our future and goals to accomplish that vision/mission. Her premise, which I think is spot on, is that we get so engrossed in caring for our loved one that we can easily lose ourselves in the daily struggles.   I totally get what she’s saying because I’m really struggling with even seeing a future beyond tomorrow.
Don’t get me wrong, I’m not being morbid and I’m not depressed, but one of the ways I cope with all that I have to do is not make too many plans beyond today or next week so that I don’t get disappointed if plans fall through. To be honest, if I was not caring for Lynn full-time while trying to work and maintain our home, I would go back to school to get my Masters Degree in Business Administration or maybe Criminal Justice. At the very least, I would study and get my certification as a Human Resources Professional.  However, every time I start to “apply” for one of those, reality sets in. To take a course, you must have quiet time to study, time to think about what you read, complete projects, maybe attend study or project groups, and go to the library.  While I might attend class online, I still have to find time to attend. I currently don’t even have time to read a book for pleasure anymore (I listen to them on tape instead).  I can’t get coverage at night to attend classes and during the day I work; shoot, during the evening and night I work because I get interrupted so much during the day, it takes me 12-hours to work 8 and 7 days to work 5.  So if I signed up for a course, I would flunk out through inability to attend or inability to complete assignments therefore, making that dream unrealistic.
My other desire is to write a book about my experiences as a caregiver.  I really enjoy writing and sharing with others and there might be 10 or 12 people out there who might find what I have to say interesting (those 10-12 include family, friends, and my church).  I know; however, since my husband is a writer, that writing a book takes a significant amount of time and getting an agent or publisher takes even more dedicated energy….not sure I have that available. I expect I would get frustrated wanting to get to my writing when so many other things were calling for my attention.  In fact, I actually started on a book on vacation last summer and da moment to look back at what I wrote since then.  Okay, then strike that goal.
Maybe the secret to this personal vision and goal business is to keep it simple.  So trying to be realistic, I need goals that only take a few steps to reach and limited time and which are in line with what I have to do each day.
Okay then, here are my goals for the future…

  • I want to have sufficient income and low enough debt to retire when I turn 66, the age at which social security says I can retire.
  • I want to be healthy enough that I can still enjoy my family and watch my grandchildren grow up.
  • I want to have been successful in being able to keep Lynn healthy enough that he is still here to share those good times with me.
  • I want to be able for us both to go back to church and participate in worship there among our church family.
  • I want us to both be well enough that on occasion we can leave this house for something other than a doctor’s appointment and actually be able to enjoy the time out without rushing to get back before he “crashes.”
  • I want to go out to dinner in a restaurant and order what looks good including dessert.
  • I want to attend a movie or a play without having to leave early or miss part of it to cath Lynn at least once.
  • I want to go shopping and get a new wedding ring to replace the one the doctor had to cut off my finger last year when I had an allergic reaction to fish oil.
  • I want to take my grandson to the park and play.

My pessimistic side tells me none of the above are likely to happen. My optimistic side says don’t give up hope.  I’ll go with optimism and keep my eye on the goal….Just maybe, I can make them happen.

There are Worse Things Than MS

I got a text message from my son this week asking us to pray for him, his fiance, and her family.  His fiance’s mother was recently diagnosed with stage IV lung cancer that had spread to her bones. She has had a month of radiation and a couple of weeks of chemotherapy but she is not tolerating the treatment well (she has lost 28 pounds in a month and was already very small).  The doctors are recommending that they stop treatment and consider hospice.  Her only child, my son’s fiance, has been holding up extremely well during all this taking on the burden of support and caregiver for her mother; but it finally got to her when she was asked about a “do not resuscitate” order. 
My son and this young woman have been dating for about six years so I’ve grown very fond of her and when he shared this information, it really hurt my heart to think of her upcoming loss and what her mother must also be considering.   Next weekend my step-son (Lynn’s biological son) is getting married.  I have to wonder whether my son and his fiance will now rush to get married while her mother can still participate in the wedding.  It would be a very simple affair I’m sure since time will not allow for planning but I can imagine the desire of the daughter to have her mother there and the desire of the mother to see her daughter married.  Suddenly plans change when your focus is narrowed in on time and what’s of utmost importance.
I’m fortunate that Lynn is currently doing well.  He’s stronger and better able to move than he was at this time last year which is a blessing; however, his ability to do things for himself is no better and may actually be a little more limited.  But still, he is doing better so I’m not focusing on avoiding readmission to the hospital or making plans for greater support.  However, I know that one day, that will occur…just not now.
Sometimes looking at the long road ahead and the expectation that as he needs more support, I’ll be getting older and less able physically to provide the care he needs it becomes overwhelming.  On the one hand I hope that he won’t linger in a state of total dependence on anyone while he lies in bed unable to move or do anything on his own.  I know he had rather die than end up like that so if that point occurs, I hope he dies quickly.  But I hope that is a very long way off because even though it takes so much out of me to care for him as I do, I had rather have him as he is now than not at all.  We still share so much and still find joy in our lives and I hope that the blessing of being together continues for a long time to come.
So when faced with the awareness of how fleeting life can be, I realize once again that there are much worse things than having MS.  What he has is a nuisance but he still has life and joy and hope and that makes MS just A thing not THE thing.