Wednesday, August 27, 2008

3-week post surgery update

My physical recovery from my surgery is going fine. I'm mostly healed except for in the belly button but that is coming along too. I requested a note from my surgeon's office to allow me to go back to work next week; they had originally given me leave until 9/21. That is too long; plus
I don't want to use any more FMLA time than I need to, "just in case" - though of course I am hopeful that I won't need any more.

Last week I kind of "shut down" a bit mentally; I never logged on to my work email because I just couldn't face it, and I slept and watched TV a lot. Becky's situation didn't help, as she kept up the hysteria all last week. I do think that she is aware of my health issues on some level deeper than the obvious that I had surgery. We've tried to be careful of what we discuss around her but she's pretty perceptive. The official explanation is that they found something "bad" in me and took it out so I am better now. Her extra clinginess could be due to a fear of me not being here at some point, poor girl. Carly has been giving us tons of trouble at bedtime; she will get ready for bed but then keeps getting out, finding excuses to do things, then flat out playing with items in the bedroom or adjoining bathroom. I'm sure part of it is her being 2 years old, but my sister suggested that this behavior may be her way of reacting to the stress of what's gone on over the past month.

Despite my oncologist's grim statistics about recurrence, I'm keeping the faith that this was one rogue cell that got loose when the kidney was still in. The node was enlarged from the start, so they have been watching it all along, but nothing else looks suspicious. I got additional encouraging news last week. I had an appt with the psychiatrist that I recently started to see for medication management for my anti-depression meds. She had lots of questions about the surgery and also explained some of it to me. My pathology called it an "omental mass"; I hadn't gotten around to looking that up but she explained. The omentum is like an apron across the midsection, that contains a lot of blood vessels, that take the nutrients from the intestines and move them to the rest of the body. There is also a big lymph network in the omentum, which acts like a "filter". So she thought that it made total sense that a cancer cell would be "caught" there, and thought that was much more encouraging to my long term prognosis than if the cell was found in one of my organs or bones. I like this explanation, so I am holding on to it.

I also do a visualization every night in bed where special cells enter my body through the top of my head and travel through my body. Any "bad" cells are attracted to the special cells like a magnet and are killed on contact. The special cells go all the way down my body and leave through my feet. I do believe in the power of visualization so I feel this can't hurt to do.

There is no treatment to do at this time. Kidney cancer, unlike other cancers, does not have a standard chemotherapy, nothing that they can give you to kill unseen cells. There are several new systemic therapies, but they are all for shrinking existing metastatic tumors that are either too numerous or too difficult to remove. My oncologist said he would be comfortable with me having follow up scans in either 4 or 6 months, which would be November or January. At first I thought I would wait until January, so that if there was bad news, I would not be dealing with it during the holidays. But then I decided that the likelihood of bad news is small, so I will have the scans in November. If they show nothing, like I hope, then we can enjoy the holidays without the specter of the unknown hanging over us.

Anyhow, I think that it all just kind of hit me at once, so I've been mentally on vacation of late. Starting to pull out of it - we are starting to plan the family birthday party for Carly in Oct - three years old! wow She wants a Little Einsteins theme, so I ordered invitations and a few other items online. I like doing some kind of favor for the cousins but didn't want to give them a bunch of junky toys since we're all trying to commit to less "stuff" in the family. So I went onto Amazon and ordered Little Einsteins books for all the young cousins (six including my two). The books are paperback so most all were $3.99. I got a puzzle book for the 8yrold cousin. There are two teen cousins too; I like to include them so I will probably get them each a $5 McD's gift card or an iTunes card.


Pollyanna said...

Haven't you ever seen Oprah? When she has Dr Oz on he explains the omentum pretty well.

I love the visualization. I think whatever works for you is great!

Hugs and continued good health vibes your way.

Bec said...

I think Thane is going to have a Little Einstein's theme too. I found some cute little cloth favor bags on eBay, so I got those and will figure out something to put in them. Books are a great idea! I know Thane would be over the moon getting one of those in a gift bag :-)

I think you've made a good choice going and checking on things in November. It must be very hard to wrap your mind around all of this. It has to be scary, even when there are a lot of reasons to think your personal prognosis is much better than the stats being quoted. I'm also glad you got some more answers.

I've been wishing I could find a way to be more helpful or more supportive, but I haven't really come up with anything yet. Please don't hesitate to tell me if you can think of something.

Hugs and strength to you and your family.


Natalie said...

Clearly, I don't watch enough Oprah (either). :) I'm glad that your dr's explanation made sense to you (makes sense to me, but I'm not the important one here), and I think I'd have to hang on her words and believe it with all of my might. I've heard that visualization can make a big difference.

On a less serious note, I bet the LE birthday will be a blast. ;) Good for you for ditching the silly goody bags - I can't stand 'em and usually it's all thrown away within a few days anyway. A book sounds like so much more fun.

Continued PVs to you and yours...