an awkward conversation

April 16, 2013 at 1:50 am (Uncategorized) (, , , , , , , , )

there are more days now when i can not get out of bed.  there seems to be a routine to the cycle, first i can’t sleep for the whole night, then i start throwing up/dry heaving. this lasts for 24 – 36 hrs.  during this time my head hurts, my whole body especially my joints hurt. i can’t read and barely tolerate music. it sounds like a migraine except it isn’t. i had those for years when i was younger.  most alarming is not that i can’t eat anything but i can not even think about fluids without losing it.  after this i go to other stomach issues and a terrible weakness.  joints still hurt, head still hurts and the nausea is almost unbearable as with even a move i may bring it on.  day 3 even though i am exhausted, weak and dizzy it is important to me so i move that mountain of pain and practically crawl down the hall to the living room.  as i ease into the recliner there is a sense of triumph.  if i can just keep getting up, take a shower, then the hope of doing some small house chore or cooking dinner for my love, starts burning like the embers being blown on oh so carefully to get the flames flickering.

as i lay on the bed that first day, praying if i lay very still i won’t throw-up, my mind goes to making my list.  this is the list of things to be grateful for this day.  it starts with the fact i opened my eyes and goes on to even the tiniest comforts and joys i know are in my life.  as i slip in and out of sleep, which is almost coma like, there is a moment of looking at the clock and thinking this will pass in x number of hours and i will be able to have ice cubes. yay for ice cubes!  now what comes after ice cubes? that is my next goal, just make it to that next point and i am farther along the journey to sitting in the living room.

here i am on the 6th day and able to go on an errand with my honey.  as we are driving along and enjoying the beautiful day the conversation drifts in and out.  we are going on a short trip in a couple of weeks and i am a bit concerned but hey i am being cremated so that can be done anywhere.  over the past 5 yrs we have discussed what “quality of life” means to us and the right for a person to choose for themselves.

me- would you say if my life were reduced to days like we just had, that would be a good quality of life?

him- are we just talking about one or two days?

me- no we are talking about if that became my every day.

him- then i would have to say no

me- do you understand what i am asking you

him- yes i do, i just don’t think a few days now and then define your over-all quality of life.

me- no but if that were my life every day…. that would not be my idea of a good quality of life.

him- i feel so helpless when you are having those days.

me- let’s talk about how to handle them then.  i need you to come and just sit with me or even read to me since i can’t read on my own.  if you could make sure you take care of yourself by going to the gym or playing bridge with your friends i would love that.  can you do that for me? should i write you a note that you can bring out on those days and remember what i am saying today.

him- i could read you poetry if you think you would like that.  i will check on the cats better and i am going to do better next time.

me- i know  you will. poetry would be great. i will get out the books i like.

we have had many conversations, not all this important.  i guess i don’t really mean that.  every conversation has its own importance in its own way.  the smallest gesture can mean the world to someone.

remember not to let one word go unspoken, not one hug or smile be withheld.

the conversation project is an organization that helps people start talking.  too many of you will wait until it is too late and no one will know what you believe is right for you or what you want for them.  you are not too young, too old, too healthy or too sick to have the conversation.  www.theconversationproject.org

19 Comments

  1. prenin said,

    So sorry you are suffering so much my friend.

    Love and hugs always!

    Prenin.

    • s blake callahan said,

      so many suffer and honestly even on these days i know just how great my life is and has been!

      thank you for your kindness and concern dear man.

      hugs to you:)

  2. tersiaburger said,

    Oh my friend I cried when I read this. Vic and I used to have discussions like this. I truly wish you would get palliative symptom control… It will give you quality of life! As a medical professional you know that!!! Okay, I have moaned at you because that is what friends do! I cannot bear the thought of you living through the same horror as Vic. I so wish I could protect you the way you are trying to protect Chris. Lots of hugs and warm loving thoughts!

    • s blake callahan said,

      you know better than anyone else that until a doctor is ready to give up on me and say i have less than 6 mos. to live there will be no palliative care for me. my dr said he felt torn as he knows there are days i suffer but there are days i am able to do some short errands or cook a meal. the fact that i can drive to the local store now and then automatically disqualifies me. a few months ago he insisted i accept some pain medication and i have just chosen to hang on as long as possible without it. there have been days when i just gave in and let my body and mind rest.

      of course when i do this he worries more and yet i think it gives him a mental break. our system for dealing with patients like me or vic is sorely lacking. common sense is just not so common is it?

      please don’t worry, you have certainly had enough of that. i hope that you are doing well and hope you know that i think of you, your family and of vic. you are amazing in your ability to care for others and i can only hope that you find a way to give some of that care to yourself.

  3. tersiaburger said,

    Please let me know you are okay!!

    • s blake callahan said,

      i am still here and looking forward to better days ahead:) today was better and i had a few hours to go and get my hair colored and brows waxed. YAY! it really is the little things that make us feel renewed.

      how are you doing? i worry about you and hope to see more posts soon.

  4. terry1954 said,

    I hate clicking the like button but i want you to know that i am here. I feel as helpless for you as I do with Al. I hate knowing what happens in your days. you are a valuable person in my life dear friend. My thoughts are with you often. you are loved by me, always remember

    • s blake callahan said,

      at first i never clicked that like button, it just seemed wrong. now i understand it is a way of letting those i care about that i am there. even if i can’t write a comment you will know i have been there.

      we all have our bad days and some are worse than others that is for sure. when i read about al it breaks my heart. at least i know or understand what is going on and poor al doesn’t. it must be so hard for you to try and help him understand knowing that at some point he just can’t.

      thank you so much for your love, truly it means a lot to me. i am sending it back to you with big warm hugs.

      • terry1954 said,

        thank you my dear friend. you are so unselfish. your post was about you and how you feel and yet you talk about Al. you are pretty darn awesome, you know??? !!!

      • s blake callahan said,

        we all have to care for each other don’t we? it helps to know that we are not alone in these rough waters.

  5. tersiaburger said,

    Sandra, It is me again….In appreciation for your support, advice and friendship I have nominated you for the Best Moments Award. I hope you will accept this award. I am your biggest fan and supporter. I truly admire and respect you. http://tersiaburger.wordpress.com/wp-admin/post.php?post=2595&action=edit&message=6&postpost=v2

    • s blake callahan said,

      oh gosh you are so sweet and i am doing it this time! surely i can figure this thing out if i try hard enough. i read your post and was floored by what you had to say about me but most of all just your generous spirit.even with all you have gone through and continue to go through you manange to show others such love and support.

  6. Angie, also known as YS :) said,

    Nausea is one of the worst things to suffer. No antiemetics help? Here’s something that, when you make it to the living room will make you feel better immediately…a no-drug remedy for you 🙂 There is a show on Animal Planet called Too Cute! Promise me you’ll find it and watch at least one show. I won’t go into what it’s about now but I promise you you’ll love it.
    Love you.

    • s blake callahan said,

      Well I had some but I threw them up and afterward I keep thinking it will stop soon.

      Too Cute is one of the best shows ever!! How adorable are they?? I’m pretty sure you told me about it before. It is one of Chloe’s favorites. She gets right in front of the t.v. and ignores my pleads to move a bit. She is so funny:)

  7. jmgoyder said,

    I felt terribly upset for you yesterday when I read this post and I just couldn’t find the right words. I still can’t, but I hold you close all the time, my friend.

    • s blake callahan said,

      sometimes i hesitate to write about those days as not to upset anyone. especially now with what is going on here it seems so selfish to complain.

      your friendship is a real blessing to me.

  8. Jackie said,

    You are so inspiring through the example you set.

    • s blake callahan said,

      all i can say here is thank you. i don’t feel inspiring. i feel like a woman who is going to die but is not going to waste time worrying about it.

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