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.

First day of Kindergarten

Monday was Becky's first day of K. In the morning at home she was very excited; put on the new outfit and shoes that she had picked out herself when we went school shopping. The excitement continued when we got to school, but then as we went downstairs to take her to the cafeteria (it was breakfast time when we arrived), she started to get upset. It was so sad; she cried and held on to me and asked me to stay. She even followed me out of the cafeteria. Luckily the pre-K class that she just left last week, was in the adjoining play area. Her old teacher saw the scene and took her back to the cafeteria. It was heartbreaking to see my baby's pleading, tear-filled eyes, but I knew I had to go.

When I picked the girls up that afternoon, Becky proclaimed school to be "great"! She enjoyed her day very much. The thing she loved the most was having her own desk; when I got to her room she proudly showed me her name on the desk and all of her supplies stored in it. The next day Jim dropped the girls off and Becky was fine; she showed him her desk and then lined up with the class for breakfast.

Today was her first day of actual class. She told me that she is excited about having homework, and going to gym class! Jim was running late this morning so I took the girls to school; Becky looked a little sad as I left but she told us last night that she won't be crying any more. I hope that is true. Through all of this, Carly is her own confident self; swaggering into her room each day with enthusiasm.

This photo shows me a glimpse of the young lady my first baby is becoming...

Friday, August 22, 2008

Which LOST character are you?

Your results:
You are Mr. Eko

Mr. Eko
Claire Littleton
Boone Carlyle
Hugo "Hurley" Reyes
Sayid Jarrah
John Locke
Michael Dawson
Walt Lloyd
Sun Kwon
Kate Austen
Jin-Soo Kwon
Charlie Pace
Shannon Rutherford
Dr. Jack Shephard
Ana-Lucia Cortez
James "Sawyer" Ford
You are neither a leader nor a follower. You are a Bible reader and are motivated by God's will. Many people have respect for you.

Click here to take the "Which Lost character am I?" quiz...

Requesting positive, cooling vibes

Today about 1200 women in the greater Cleveland area started the Breast Cancer 3-Day walk to benefit the Susan G Komen Foundation. Unfortunately, this weekend looks to be one of the hottest and most humid we've had this summer. I know they would appreciate any positive vibes you could send as they do the three 20-mile walks.

Blog to check out

I get emails from Gretchen Rubin at The Happiness Project, which I really enjoy. She recommended a site called Someday Syndrome. If you are a procrastinator and a "someday..." person like me, you may enjoy it as well.

Friday, August 15, 2008

Concerns of a more mundane sort

So I'm at home to rest and recover from the surgery. It's a time of peace and quiet, as I am almost never home by myself. This pause from my hectic life is giving me the chance to nap, to watch dvds that I can't watch with the girls around, and to just hang out.

Unfortunately, Becky has other plans for me. Timing is everything, and not always in a good way. The girls started their new school on August 4, two days before the surgery. Carly has taken to the new school like a fish to water; you would never know she'd been somewhere else. Becky was all smiles the first week too.

Then came Monday... she woke up crying hysterically. At first I thought she'd had a nightmare but she said no, just kept saying "I want you, mama". Jim and I both tried to feel her out as to what was going on. She did mention that she was upset because the morning teacher would be on vacation this week, and that she was sometimes bored because there wasn't a computer in the classroom. (Turns out there is one, but it's not turned on every day.) Jim asked if it was okay for her to stay home with me. Well, not really... I was exhausted because I'd done too much over the weekend and not rested enough, but how could I say no? I ended up only getting about an hour nap on Monday, but figured I'd make it up Tuesday.

Each morning this week she has cried and cried, complaining of tummy aches and saying "I want mama". On Wednesday I gave her some tylenol and that seemed to help, though I'm sure it was just a placebo. On Thursday, she kept crying that the tylenol wasn't helping. Jim took her and Carly to school, with Becky becoming increasingly hysterical as they drove. When they arrived, he watched as B crunched her abdominal muscles and made herself vomit. He called me and I told him to bring her home. She was not allowed to watch TV or use the computer, and she said to me "I promise I will go to school tomorrow. I will keep my promise."

This morning, more of the same. I didn't bother with the tylenol, and kept reminding her that she'd made a promise. She is also upset because she has to have her kindergarten immunizations today, but that is a smaller concern. Jim called to tell me that the teacher had to literally peel B off of him.

I totally understand that my mommy's girl wants to be with me and has had a ton of change recently. She's also disappointed because she didn't understand that she's in pre-k until 8/27 when K starts officially; she wanted to start K right away. My heart breaks for her, but I also need my rest. We've talked several times about how mommy is supposed to be sleeping a lot and that she needs to go to school. She listens but then says "I want mommy" and starts weeping again.

This is to the point where I am seriously considering telling her that I am going back to work next week, dressing for it, then changing back after she leaves. This kind of deception seems very wrong but I'm not sure what else to do. There is no way I can have her here all next week with me.

Wednesday, August 13, 2008

The next chapter

It's been a week since my surgery, and I am resting comfortably at home, as comfortably as you can with two little children in the house. The surgery went well; the surgeon said that it was less complicated than he had anticipated, so they let me go home the next morning. I was really grateful for this, as I just wanted to relax at home. It was so hot during the night and I was stuck in bed with a catheter and leg compression sleeves, which help prevent blood clots. After reading the story of a woman who died of a pulmonary embolism the day after her daughter was born, I had told Jim that I would never again complain about the leg compression. And I didn't, but man, they make me hot and because I can't move in the bed much, I just get so sore. Then, my roommate was having issues throughout the night, so there was TV on very late, lights on most of the night, etc. Plus she was vomiting, which actually didn't bother me much, but I didn't start to get good sleep until about 3AM. Then starting at 4AM, I had two different nursing assistants take vitals, and two different phlebotomists take blood. Argh... However, I kept it all in perspective. My roommate had MS and had had her bladder removed due to cancer. Some medication she'd been given had made her really out of it, so they kept asking her questions to see if she was more lucid. I might have been hot, tired and sore, but at least I got to go home the next day.

They did the procedure laparascopically, which is pretty cool. I have a small incision to the left of my navel and one to the right and slightly below; both are less than 1 inch. The third incision is through my navel, which is pretty weird! That is the only one that is still a bit sore, but it's healing up too. This recovery is much easier than the recovery from my nephrectomy. At that time I was in much more pain than I had thought I would feel after a lap procedure. This time I feel like I had expected to. My job says I am ok to be off work until 9/22, which is crazy - also is more than 2 weeks longer than I was allowed for the nephrectomy. When I see the surgeon for follow up, I will see when I can go back to work, hopefully much sooner. That follow up hasn't been scheduled yet - they actually haven't called me since I came home.

Dr. Rini, my oncologist, called me this morning with my pathology results. The nodule was malignant with renal cell carcinoma. The good news is, that is the only place they saw it, so while I am now a member of the stage 4 cancer survivors club, in Dr R's words, "we would call it resected M1 disease because your only site of metastasis would be resected with nothing visible left and no treatment would be offered." There isn't typical chemotherapy for kidney cancer - it's not like other cancers where they remove everything they see surgically, then blast you with drugs to try to kill any remaining cells. Instead, the systemic (drug) therapies, all of which are pretty new, work to shrink or kill existing tumors when they are too numerous or too dangerous to be removed surgically. My stats are that the chance of no cancer coming back is 30-35% right now. I cried when I heard that, but I know that stats are based on past experience, and that advances are being made all the time; also, I could be in that 30-35%. So I'm upset about this turn of events, but am not going to let it restrict my life if I can help it.

Before you think I am so positive about all this, I will say... I am mad, sad, disappointed, scared, lots of emotions. Even though this is not in my control, I feel bad that I am putting Jim through this. After watching my dad die of cancer, me getting it was his worst fear. I fear not seeing my girls grow up and not being here for them, and I fear leaving Jim to raise them alone. Yes, I know that I am projecting a lot here, but these are the thoughts that go through my head.

Tomorrow will be a better day.