Saturday, April 30, 2011

What do we do?????

May not be a good time to write, but part of this exercise is to have a place to put my thoughts.   I am very tired.  I think not being in my own home with my own stuff has something to do with it, plus the fact that I have cancer growing in me probably doesn't help the situation.   I just think in some ways I may have taken on more than I can chew at a time like this.   Also, I haven't told my mother that the cancer is back and have decided that maybe I won't at this point.   I have feelings of quilt for not, knowing as a mother how I would feel if my daughter kept something like that from me.   The other side is, at her age and the way she worries it would almost seem wrong to put her through it at this time.  If and when I have to re-start treatment of course I would let her know but for the time being I think I will 'leave lying dogs lay" or laying dogs lie whichever the saying is!!!!!

This decision is partly self serving too.   I won't have to put up with the "how are your feeling" and are you "tired" comments that would be continual.  What I realize is that nothing is set in stone on how you do these things, no one way being the only way.   It is important to see both points of view and decide not only for the benefit of others but also where I am emotionally in the process.   Life's decisions as always can be very complicated......

So that is my sage advice, wisdom whatever for to do things around the place as there is noone this time to do these things.......not as much of a holiday as I had thought!!!!!!!! But we won't tell anyone.....shhhhhhhh

Tuesday, April 26, 2011

Family Visits???!!!!!

Well life has again brought me to interesting insights and places both figuratively and literally.  I am visiting family with can be both a blessing and a curse, and I mean that from both sides not just my own.   We are so excited to see those members of our family that we have not seen for sometime, but as is often the human way, we forget too those little annoyances that go along with these visits.  I can honestly say that I have made a decision to, if not enjoy these moments of annoyance, at least to reflect on the uniqueness of each person and how we all seem to fit into the play that we call family life.

I have been both surprised at how such an attitude has aided me in really appreciating my family, but also how it has illustrated my own little 'idiocyncracies' that I am sure have a similar effect on them   We are so different yet in so many ways the same....just different degrees of dysfunction at different times.

I plan on making this trip an opportunity for joy, laughter, excitement and even maybe a little growth in my own life in patience, understanding and tolerance.  I am blessed to be able to see that these moments are to be treasured and saved as times that may never be captured again.   At the same time, I am missing those who I have left behind and realizing the blessing they too are in my life.

Life is an interesting cycle of visits and misses, but all in all the people in our lives are what make up the substance of our own narrative....let's make the story one that is to be shared, savoured and honoured......three more weeks to go!

Wednesday, April 20, 2011

Decision Making

Life is very interesting.  From a number of points.  I began this blog in order to put some order into what I see at times a jumble of thoughts and ideas that run around in my head.   It was in order to figure out my journey with cancer.  What it seems to have become is a journal on how life seems to evolve in spite of this disease.  Just because I am dealing with issues does not mean that the world in my sphere of influence stops functioning on another level.   I have come to see that by watching and listening to my own experience with other and my voice in these other times I often find the answers that I have been searching for on my own journey.

Point in case!   I know that one day I will die.  We all will.   Maybe from cancer, maybe from an accident but eventually I will not exist as I am in this world.   It is a given.  What has happened recently, is that I have come to see that there are many ways in which this transistion  can take place, but more specifically  if it comes from this disease.   I can fight to the bitter end, hoping beyond hope for a miracle.....or I can decide at some point that enough is enough and accept the inevitable.  I wonder which I will do?  I can't  say I would do one or the other but in reality I will not know until the question is no longer a question.   I would hope that I would make the final decisions for no other reason than to alliviate the pain of having someone else have to make it.   I cannot fathom how hard it must be to have to decide at what point another person's life should do you make the call when enough is enough for another.   I pray that I have the ability and the strength to make those decisions myself....and I don't mean through a living will...but through my own living words.   To be able to give that peace to my family and friends  has become my prayer.  Ironic, that in a previous blog I recounted how the family and friends of people with serious illness feel helpless and out of control, and yet sometimes the decisions that finally become theirs to make are the ones that they would probably prefer not to have to make. ......If nothing life is just one big irony!!!!!

For some this conversation may seem morbid, but I have come to see both sides recently.  I believe that every event in our lives is an opportunity to look at our own life and reflect on how we can enlighten ourselves in making our journey a true potential of the human spirit in this life.    Here's hoping I too can find that strenght when it is needed!

Friday, April 15, 2011

Families and Friends.......

Haven't had much urge to journal lately.  Partly, because spring is in the air and find it much more satisfying to go for a walk or sit on my swing outside.    Also, I am preparing for a trip and that seems to keep my mind and my soul busy......

I had an interesting thing happen the other day that made me sit up and take notice.  It is not really a revelation, but I had to take a minute and think about the question that was posed to me.  It was suggested that I can understand the effects of cancer on a family member.  In some ways I can, b/c my father too had cancer and we struggled through that, but I was not his caregiver.  I was able to visit and be a presence and emotionally try and support him and my mom, but it was for short periods of time and I had the luxury of then going back home for months at a time.

What I realized,is that I really don't know what it is like to be the main support, and caregiver of a seriously ill loved one.  I remember my daughter mentioned that she had a better understanding of my mother than I did during my dad's illness, and I totally agreed with her.  In some ways I think being the family member is a much more difficult part in the journey.   They love you, want you to be happy and comfortable, but in reality have very little control over anything that goes on.   They can't make the decisions necessary to the treatments, they can't schedule anything concerning the treatments, they can't take the pain and depression away, they can simple sit by and hopefully be as much help as possible while feeling hopeless and totally helpless a good part of the time, not to mention frightened, guilty and a whole gamat of other emotions.

The patient mind you is in a whole different world.   First, the drugs work really well at keeping reality at bay.   Often you are in lalala land, sleeping away the time, or in a different dimension all together.   I don't mean it is easy for us, by no means, but we are in control of anything that has any semblance of control.  The doctors deal directly with us, unless of course we are not capable, and we are the final decision makers even though our decisions may have hugh repruccusions on our families.   I think it is harder for loved ones, that is what I think.   They can just love us through it, and in the end, if we survive try and put their lives back on some sort of 'normal' track, and if we don't, try and find a new 'normal' to live with out us.   There are times when I realize that this disease is much much more than just a physical cuts right into the core of every person involved.....and maybe more into the soul of the family and friends of the sick person than we ever realize.

Let's put all family and friends of  those suffering from this disease in our thoughts today and everyday, they carry a hugh burden and often are forgotten in the chaos......God bless you all....and realize your just being there is more than enough!!!!!....

Wednesday, April 6, 2011

Knowing love it!

"You really know only that which you first love" (Richard Rohr "The Naked Now").   I read this line about three days ago in the aforementioned book and it has impressed so much on my brain that I have even found that it has entered my dreams.  Needless to  say, I have had to think, and think, and think, about what it actually means.   It sounds at first read as if 'yea I get it' but as time goes on it takes on a very profound meaning.   For me, it has actually become more than I get it, but omg it is so true!!!!!!

When we really love something  or someone for that matter, we are open to whoever they may be and see them warts and all.   It is not the 'idea' of them that we love but them or it in itself.   My grammar may be a little off, not easy to put into words what I am thinking.   I have come to the realization that having a life threatening disease allows us to either become very open and 'love' life, or can have the opposite effect and draws us up into fear and despair, and so life is not longer lovable.   I have chosen to love life over the past ten years, not always liking my situation, but embracing the life that I have.   It is in this loving that I have come to really know what life is, and through that knowing, that death is a part of it not something foreign.   Not something to be feared and ignored, but to be understood and acknowledged and then to embrace the living part of life.  It is the freedom to accept  the moment of life that is given to me....not the part that may be taken away.

This knowledge that we must 'love' before we can 'know' is so powerful.   When we approach with negative or fearful thinking...we are too analytical, too judgemental, to controlling, and we actually miss out on loving.  We find reasons and excuses not to love. Love is not some romantic, nostalgic knowledge of what we would like our life to is unconditional acceptance of what 'is' and then embracing it and all that it gives.   I wish I could pass this knowledge on to everyone, especially the young, in order that the life they have is seen as gift.  It only took me a half a century to learn this, do you think I have a chance of even teaching my daughter it, let alone anyone else.

Well, I will go now and live my life, loving it and really knowing what it means to be alive....I wish everyone a glimpse of this amazing revelation!

Saturday, April 2, 2011

Peripheral Neuropathy

Peripheral Neuopathy!!!!....something I didn't even know existed until this dreaded beast darkened my door.  It is the condition that often is a side effect of chemotherapy.    For me it was a deterioration of the mylan that covers the nerves.   This does not usually regenerate so the side effects continue over time.  What this all means is that my legs and feet hurt like hell most of the time, but especially at night.    Obviously, I had an exceptionally bad night last night which is why I am writing about it.   At night it is an aching, twitching, that prevents you from actually finding a comfortable way to lie.   I tossed and turned as my pain goes right up into my hips and makes it feel like my body weights a 1000 lbs and is pressing on the nerves of my hips.   During the day, or more particularly at the end of the day, my feet burn and  feel like I am walking on hot coals.

Not to sound like a martyr but I have become used to the pain and usually can manage it and ignore it.   There are times though, like last night, when it is so unbearable I just about cry the whole night through.
I have tried drugs to alleviate the pain but they make me feel even worse the next day, sluggish and stunned, so I figure good old Advil seems to be the best for me.

It is interesting that sometimes the thing that keeps the cancer at bay causes more or different problems.  I know they aren't life-threatening, not usually anyways.   The doctors do tell you, or at least told me, that there is a chance that I may end up with leukemia by taking the particular drugs for my cancer.   This is b/c it lowers the blood count and sometimes it won't rise again.  I was extremely lucky that not only did this not happen but during all 12 rounds of chemo I never had to rec a blood transfusion.  So I digress as usual!

There are a number of things most people don't know about that cancer patients (survivors) must contend with after the treatments.   One is this pain in our limbs which is very common.  Another, due mainly to surgery in the abdomen, is constant bowel problems.  It appears that the bowel is not very 'happy' when you play with it.   It has a tendency to punish you for years to come for trying to move it around or dissect it.   Having had both, the bowel is a constant problem too for me.    Anyways, today I am just whining about all my ailments.   I don't usually complain, but last night was really bad and I just needed to vent.

Just a thought, the next time you see someone who you know has gone through these treatments, which they say in a 100 years will be likened to bloodletting, ask them really how they are and maybe even let them know that you now know that even after the treatments they are contenting with some problems.    I mean don't say something like "how are your bowels" that might not go over well.

So my rant is over, I feel much better, and now I will go off and clean house.    One of those things that doesn't go away either after cancer..........................

Friday, April 1, 2011

Bucket Lists......or Adventures waiting to happen?????

Yesterday was my three month.   It went very well and since my appt with the second doctor I have been feeling very optimistic and happy.   I think knowing  there are two people with alot of knowledge btw them, that seem to have the same philosophical outlook and hope fullness, gives me the ability to just let go and live.   I will allow them to determine when I should start to think about doing treatments etc. as long as I feel well.   So........

I have started to look at what I want to do for the next little while...besides the regular stuff I have to do just because I am still alive and kicking.   The 'bucket list' stuff.   What did we call it before the movie? I guess our 'wish list'.....I don't really have a very long list mainly because I am quite content with my life, and having gone through a divorce and cancer a couple of times, I have tried to do the things I want all along.   Yet, there are a few things that always seemed out of reach and just for wishing.    In 2004, this was also true, yet I made a decision to do one of those 'wishfullness' things and it happened.  I had always wanted to go to Disney World in Florida with my daughter.   Being on a very limited income it never seemed likely that it would happen but that didn't stop either of us from dreaming about it.  Well, when I was re-diagnosed in 2004, I made a promise that we would go before I did treatment again.  I don't promise things very often, but when I do I follow through.   We ended up driving to Florida in August 2005, and yes it was hot but it was also the cheapest time to go.    We went to the Gulf Coast and stayed with friends for six days and then drove to Orlando and spent four fun-filled all inclusive days at a resort in Disney World.    We had a blast.   The only damper was that it was August 2005 and Hurricane Katrina came to Florida while we were there.   My friends, who we were to meet in Georgia on the Friday and convoy home, decided that they were leaving early b/c of the hurricane.   I wasn't going anywhere...I had spent years wanting to come here and I was damned if a hurricane was going to chase me away......the East Coaster in me coming out!   So we stayed, and beat it home on the Saturday.   Fortunately Katrina didn't release her full force before she hit the gulf so we were safe, not so for those people in New Orleans.  

Well, this time I am going to fulfill another long time wish, more so of my daughter's than of mine.    It will take planning and saving.   My financial situation is precarious at best, but as I have proven to myself when I decide to do something, I make it happen.  So, this too will happen.   One thing that cancer has taught me (not a blessing simply a lesson) is that if you want to do something DO IT.   Most people spent their lives wishing they could do things but either just never end up doing them or constantly put them off.   When you are faced with an illness that does not offer you a timeline, you are forced into  the reality that now is all the time you have.  Not that you don't plan for the future, you just don't live there.   Today is when you live and that is why today I will begin my planning for not only filling another frame, but also crossing off something on my bucket list.  I don't really have too many more things on it but I will do at least one of them this time.

I will digress here....when I became a single mother one of the things that I found out was there would be alot of activities etc available to a dual parent household that would be most likely not available to me.  I mean in the sense of a second person to help out.   I made a decision at that time, that there might be alot of reasons  why I couldn't do something, but never would I use the excuse b/c I was a 'single parent'.  It just seemed like a cop out.   I taught myself to make a decision to do something first, and then from that  point on every decision I made would be directed at fulfilling that first decision.   It I wanted to go somewhere I would commit and then I would find someone to help me out either babysitting, a ride (I didn't have a car then!), or even financially.   We were not going to do nothing b/c of the situation we found ourselves in.   The major obstacle was housing....I would live in a nice, safe place no matter what.   I always did, and it surprised a lot of people.   So, if I want to do something the first thing I do is decide to do it....the rest just seems to flow from there.....a little life's lesson for everyone whether you sick, poor, or just wishful!!!!!!!  

Although I refuse to say at anytime I have felt cancer is a blessing, I will admit that because of this disease I have done many things in my life I may just have dreamed of doing.    For that I am thankful!  There have been more than enough reasons why I shouldn't, couldn't, wouldn't, but I have decided to say "why not" instead of remain in the world of "why" off I go to park the bus, passengers should plan on taking a walking trip for awhile, while I plan my next adventure.......