5/24/12

What Turns Out Not To Be Next

Today we had a visit with someone we've never met before, a nurse practitioner who was theoretically standing in for Dr. Bouncy.  Unfortunately she left my mother in tears and a degree of maternal distress that was very difficult to see.  I have to admit that she also left me in a degree of internal distress that was somewhat difficult to experience, as well...

For one thing, she made it clear that Dr. B either misinformed us or had changed his mind without consulting us in any way; the option for clearing my meningeal lining of cancer cells has been vetoed, will-we or nil-we, as has any other treatment options than kicking us unceremoniously out of the hospital as soon as I no longer have a condition that they are legally required to treat.  In other words, as soon as my current course of radiation is through on Friday, we're out of here unless I literally cannot move - if, for instance, I have a heart attack or my organs fail or I am completely incontinent due to radiation damage to my intestines (not an entirely unlikely scenario).

This, in spite of the fact that it will be a holiday weekend, with the attending short staffs and unavailable rooms that usually accompany said weekends.  That is, according to the Nurse Practitioner of Doom, our problem and not theirs.  We should have had our ducks in a row and our papers all in order, in spite of the sudden and unexpected onset of my crisis.  After all, we've had at least a week to adjust...

Speaking of adjustments.  Today's radiation treatment, intended to be a two-parter with one treatment in the morning and one in the afternoon, turned out to be a single.  One of the radiation machines went on the fritz.  Again.  Which was possibly a blessing, as the a.m. treatment was once again very painful, and unfortunately the condition of my leg and foot and back has degraded since then.  I am having intestinal issues already, my leg and hip and foot are more swollen and painful than they have been in a long time, and we are now slated for two treatments tomorrow, instead of today.  My team is asking me to make decisions about pain meds, but I have no idea what was working on Tuesday that is so clearly not working today.

So.  Tomorrow is another day.  Let's hope maybe somewhat better - good news on the housing front would be nice, for instance, and less pain and swelling in the leg and hip and back would be better still.

We'll see......



5 comments:

Delighted Hands said...

Just doesn't seem to be necessary to have this grief now, too, does it?!

Jill Stanze said...

you are one of my most daily thoughts...

we are barely friends, yet connected by breast cancer which seems to be an 'auto-connect' of sorts...

here's what i don't get today. why at this time of significant and scary unknowns are you expected to see someone new? where is dr. b? NOW is most certainly the time to find comfort, understanding and compassion from the person who has treated you the longest! not to have someone new deliver medical jibber jabber, someone who is a complete stranger. SO unfair. SO clinical. SO disappointing...!

you continue to share your story. those who have been touched, have been so by your life, love and good energy. all of that has nothing to do with the physical deterioration that your body is experiencing. what we all see and feel is the presence of 'you' which has made a difference. know that. believe that...

thinking of our family as well...i met and talked with your mom, barb, many times...

thank you for the courage to continue writing. i look everyday...

peace and love,
jill

Jim's Girl said...

My heart goes out to you. It's hard to watch our mom's go through this when we're sick. There's so little they can do for us.

Here's hoping that Nurse of Doom is the one that is out of the loop.

~Kate

The Violet Hoarder said...

Geez, maybe you should call Dr. Bouncy and kindly request/demand an explanation of this development--and of his absence at this critical juncture. I'm hoping Nurse of Doom is acting this way out of ignorance not malice. I've seen such wonderful nursing...but I guess there are always exceptions. I ran across a saying yesterday that reminded me of you and your mom: "You never know how strong you are until being strong is the only choice you have." You guys are towers...

Nancy K. said...

At a critical time like this the last thing you need is an insensitive nurse! You and your family are working together as a team to get through each day ~ someone that cold and harsh just disrupts the entire flow of strength that you get from each other.

Pisses me off!

(said the lady who suddenly refused further treatment, when in Septic Shock, because of an 'abusive' nurse who kept yelling at me for moving when she was trying to draw blood from my collapsed veins. There are no veins when there is no blood pressure!)

If you are able to stand being in a wheelchair, I hope you can get outside and absorb some of the gentle sunshine today...

I love you, Dear Friend.
You have my permission to smack the next person who makes your Mom cry!

;-)