Seeing Myself in a "Newbie"

As mentioned in the first entry, we went to a couple of groups this past week.  One of these groups was just an oncology nutrition group, the other was a support group for family and friends (though at first just Tom and I showed up for something to do, then he was forced to leave as someone of legitimate purpose showed up).  Anyway, the oncologist was making his rounds during the nutrition meeting so Tom had to leave for a good portion of it.  During this time a mother and son reminded me of what it felt like the first month of the diagnosis.

These two were seeking out every ounce of information and scared, so scared.  The son was particularly frustrated with his elderly father who wasn't particularly interested in his new-wave diet ideas.  His mother seemed more interested in what foods would keep her husband happy and comfortable.  If there was one thing the two seemed to be on the same page about, it was the frustration in change of taste and appetite.  While I can't say that it's something we have overcome (as it certainly is not) I can say that I've overcome the impulse to try and convince him to eat or the frustration and fear of his loss of appetite.  I have definitely fell fault to overstocking on things that he randomly becomes keen on and then when it's time has passed, we're left with a cupboard full of chocolate or jerky or whatever it is.

Anyhow, the point of the story with the nutrition meeting is: Get to one as soon as possible.  I kept forgetting to register, or forgetting when it was, etc. There was so much going on and so much stress those first two months... and once I was there, everything that was talked about and mentioned, we learned the hard way or through trial and error.  So, take it from me and register for an oncology nutrition group sooner rather than later.

The second meeting, the support group.  I'm not going to lie, we showed up to kill time.  Still not going to lie, when someone else came in and Tom had to go, I thought I should leave too, but stayed because I thought it would seem rude.  I still thought, "I don't need to be here, I'm just fine."  I was completely wrong, not that I necessarily needed help or support, but I was able to really reflect on my own feelings watching this poor tortured soul across the table from me, struggling with the fact that her very elderly mother was too old to have her leukemia treated.  That last bit aside, she was frustrated with the fact that her mother didn't want to talk about it.  She was newly diagnosed (it'd just been a month) and she really just didn't want to tell or discuss it with anyone.  Tom was that way.

I was able to give this woman some comfort when I was forced to remember those first few weeks.  Not wanting to talk on the phone to anyone, not wanting any of the informational pamphlets the doctors had, not wanting to talk about what he was feeling like, not wanting any part of what was going on other than just turning up and having them give him whatever it was without talking about it with him. There was a lot of self pity during those weeks, which is completely understandable, but heart wrenching.  There was a lot of frustration, confusion and fear.  The thing I most enjoyed sharing with her however, was that after a few weeks, my husband did something I'd never seen before.  As someone who doesn't do much conversing via facebook, more of a passive reader than a responder, he felt obliged to message one of my friends who's mother was in the hospital for unknown causes.

He told her that he knew his family felt the way she did when he was first diagnosed, that they were scared and felt helpless.  He then told her that the best thing she could possibly do for her mother is to just be there.  That for him the number one thing that made him feel better was knowing that his family was just in the room,whether he was conversing with them or playing with them or not... just their physical presence was enough to make him feel better.  It brought tears to my eyes as I told her this and told her how much it meant to me because up until that point I'd felt just the way she was feeling.  Helpless, scared and shut out because I had no idea what my husband felt like or how I could help him and to read that I had been helpful the entire time just by being there... just by being there.

The girl across the table from seemed to see the hope I was trying to shed for her, that with time her mother too will come around, but that no one... no one wants to face their own mortality and as those still feeling immortal, we cannot comprehend the time that acceptance it takes.  All week I've been thinking of these two instances (especially the second) and that's what's led me to think that maybe my thoughts and feelings can help someone else make sense of their own.

Why We're Here... Blogging That Is.

I originally began an "email list" where I would email various family members and friends updates on Tom's status during treatment.  Very recently I decided to begin a blog instead (as my tech skills would fail me with my overly long list of email addresses, which of course was nice, but I'd some how mess it up). The Leukemia Log was born from there.  This last week of Tom's treatment, we found ourselves in two different group meetings at the hospital as well and I found that I could use this form of communication (the blog) to possibly be of assistance to other's who find themselves in the position of caretaker or family member.

That has brought me here, writing a new blog, for a very different audience. Of course, if those whom are family or friends of ours find themselves reading this blog, that's okay too... though you may find yourself shedding a tear or two.

To begin, I'd like to share an excerpt of an email I'd wrote to my grandmother awhile back, when Tom was unexpectedly admitted into the hospital due to an e. coli infection that had everyone involved more than frightened.


I have come to realize the worst feeling in the world is not a physical pain, but a sense of helplessness when watching someone else endure an immense amount of discomfort and there being absolutely nothing you can do. I truly hope and pray that this is not a feeling I will have to revisit in life. There are moments where I just cry and wonder why I can't just have the answer. There are times where Tom just repeatedly says its not fair and asks why him and there really is nothing I can say other than "life doesn't work that way".  


To build off of this, my grandmother was the caregiver to my grandfather as he battled prostate cancer twice, the second time claiming his life.  Her response to me was that I "express this feeling so accurately".  When we (and I say "we" as mine and my husband's days seem to be so intertwined now) have a rather bad day, all I can think about are the words I expressed to my grandmother, there. For those who've had a loved one diagnosed with cancer, I'm sure this awful feeling is of no stranger.

I sort of intend for this blog to be more of the untold story. It's so hard as no one wants to hear in my updates of Tom how incredibly terrible he feels, how he can't stop thinking of the possibility of not recovering, how we both find it so hard to have been in a position where our lives were just beginning to fall into place and everything was happening in the right order and all of a sudden we were smacked in the face with a screeching halt to everything. No one wants to hear that, let alone seek it out to read every day.  They want to hear that he might have a bad day here and there, but overall things are going well. Not to say that we lie in our blog, but given that so many people are reading it, Tom would rather not have all of the details shared either.  Needless to say, I still maintain that these feelings need an outlet and perhaps they can shed some light for someone else in a similar situation.  If nothing else it's already beginning to feel therapeutic for myself.

In order to keep this not too incredibly long, I feel that I've explained myself and my purpose here... so I'll end this entry and try going for another.