Taking a Trip: Togetherness for young, Late Stage Cancer Families

On Sunday, I saw the CBS Sunday Morning Show which highlighted the Jack and Jill Foundation for Late Stage Cancer.  This foundation offers trips for young families who have children between the ages of 3 and 18, have late stage limited life expectancy cancer, have a life expectancy of at least 2 months and have not participated in any adult dream, wish or similar program.  The applications must be made by their oncologists.

This is a great program, although the amount of trips and locations are limited (donations are always welcome to help make this come through).  When I was first diagnosed with Stage IV (late stage) cancer, my daughter was 4 1/2 years old.  The second time, she was 17.  Literally, my daughter doesn't remember a mother who wasn't either fighting for her life, or limited because of damage to my pelvis.  My hiking with her wasn't as long as it used to be because the radiation tightened the muscles in the right hip and it was often painful.  I have talked to her about her childhood and she remembers me sometimes not going on hikes and trips, but sending her with her father as I couldn't do the physical part of the trips.

With the vacations together through the Jack and Jill Program, it creates times and memories which are pleasant and not always with the angel of death hovering over all.  Cancer takes a toll on the whole family.  In all my married life, we only took one vacation which was NOT to see family.  Funds are often not there for "fun" trips because of all the medications and co-pays we must pay.

I wish I had known about this when my daughter was still under 18.  But, it is there for others.

Take a look at the program.  You can find out more here.

Coming unhinged

Earlier this week, I got an email from someone who had just been diagnosed with metastatic Breast cancer.  She was asking me what I did, how I handled it.  

I think I have actually posted on this before, but it is worth repeating here.  Although I responded to her about finding out about MBC, it could just as easily be something else...or even the stress and anxiety we feel when we get ready for a scan.  Here's what I told her:

Take a deep breath.  I cried.  a lot.  I had a 4 year old daughter for heaven sakes.  I was terrified....then I decided that most people who got this news were probably not as healthy as I was , and most were not as young.....and if I were a betting person, I would bet on me.  10% survived, and that was an average, so I decided I would do what I had to and that I would beat it.  

Be with friends,  pray of you are a praying sort, and do what you can to help your body defeat it....get sleep, eat well and exercise as you are able.   Get with a support group and certainly keep on calling out to your other stage 4 peeps.....we know what it is like....most people don't.  

Remember, this is a process, and you will work through it.  Let yourself grieve.  Let yourself get 

angry....and take care of yourself.

That is the best I can offer.  It does get easier, and sometime you are doing well and then the feelings and fear smack you....but, take one day at a time, don't look down the road as all you will be doing is making a fantasy of fear ( unless of course, you are seeing yourself as very healthy, but stay away from the accepted prognosis), and doing what my mom always called borrowing trouble.  

I still stand by this advice.....We do go through this as a process....we grow, even in the face of death.  We come to new realizations and understandings.  We have an unwelcome companion by our side, but it is possible to learn to walk with him and accept, maybe begrudgingly, that he is there.  Sometimes it can even produce some interesting conversations. 

Being in the right place at the right time...

At right is my quilt(ette) "Life is like a box of Chocolates." This was a challenge from my art quilt guild to use an antique crazy quilt square (unfinished and in poor shape) and bring it back to life. I chose the saying from Forest Gump...and somehow it is appropriate here...we never know what we're going to get, and the fact that this tattered block is now finished and enjoying new life, not what it once was, or was going to be....but new life and perfectly acceptable as it is.

This last week, I went to Bloomington, IN to go to a quilt show (see my other blog for details). While there, I stayed at a motel and noticed a woman who came in for breakfast wearing the same picot knitted cap that I wore (and still have) from the American Cancer Society's cancer products store. I loved that cap, and still own it because I thought it was beautiful...

I told her I had that same cap and loved it. She said it was to cover her thinning hair. I started talking with her more fully, and discovered she was in town to get Proton irradiation on her brain as she had some spots there. She had been to Mayo, Anderson, Sloan Kettering and Bethesda, and they all had differing opinions They knew she had some form of cancer, and most agreed that it was a secondary, but they couldn't tell where the primary was so they didn't quite know how to treat it.

I felt like I had been put there for a reason. I commiserated with her. I know what it is like to be told that they see something, but don't know what it is. While we learn more about cancer, our ability to see things outpaces the ability to understand what we are seeing. I used to laugh at my oncologist, Dr. Sam Bobrow , and tell him that he was practicing "voodoo medicine". I think that the key to cancer lies in the fact that these are our own cells which have run amok, and while our cells are similar to someone else's cells...it is still more individualized than we may think.

This woman was still in the struggling stages of understanding what has happened to her. As I write this, I laugh, are we ever out of the struggling stages of understanding? I don't know what road is going to be hers. I do know that when we are told we are stage IV, often our immediate reaction is to dwell on how many don't survive. However, we do have that 10% chance of survival. Ten people out of a hundred will beat the odds. I always dwelt on that. Who is to say which of us will survive, and which of us will be hit by a car when we cross the street? Indeed, the chances of me being hit by a car were greater than my chances of getting cancer.

I also know that all of us, cancer survivors or no, have to look at each day one at a time. We need to seize the days when we feel good, and do things...and don't dwell on what may come, or the bad days which have passed (other than to rejoice that we are over them and that we HAVE survived even that). We don't know what is in store for us....but we need to make the most of what we have.

Sometimes I do that...and sometimes I don't. I'm human, and I'm as likely to squander a day as the next person.....but every blossom is sweet and we need to look at that.

God, or the higher power, or whatever, puts us in a place at a specific time. I think I was there for that woman...at least I hope so. I hope I gave her some re-assurance. I think I gave her and her husband some reassurance or slight understanding of what it was for me (and I know that every person is different...the mantra of my support group in CT).

They had a fear that their life would never be normal again. It is normal, just a different sort of normal. We live with this forever, but it becomes a less insistent companion. I remember that I got to the point where I hated the fact that all the doctor's appointments ruled my life. Not only were there cancer related doctor visits, but the dentist, the eye-doctor, my daughter's pediatrician....I thought I'd never be free of doctors visits. While my visits to the oncologist here are now every 4 months (and I had backed off to every 6 months or was it a year when I was in CT)...it is less annoying.

So...life goes on. Different. Still enjoyable....even if I do have a teen aged daughter who delights in driving me nuts... ;) Carpe diem. Trite, but true.