Another Day At NCI

I left home at about 11:40. It was raining and had been freezing rain during the night and morning, but the roads were not too bad. I got to NCI at about 12:40, longer than I had anticipated. I had difficulty finding the room where the Pre-Anesthesia Clinic was located, so I showed up about 20 minutes after that...late late late. The anesthesiologist was very nice, very personable. I cried a bit (just out of nerves and fear and memories of pain) but we ended up making a deal (even shook on it) that I would not die "on the day after my son's birthday." Then I talked with the nurse, who was not as jolly as the doctor, but still nice.

I got a lot more information about the surgery today. Oh man this is not going to be fun. I had forgotten just how much this is going to suck. At least the hospital I will be in is nicer than JHH was. Oh God please help me. I am scared and scared and scared. I remember the pain of each breath. I remember the long road back to normal movements. I'm still not back to normal, really, and the last surgery was over 2 years ago. My son, my son, my son...am I abandoning him? Is this a lost cause anyhow? This surgeon better not pull any weird tricks like taking out what is left of my right lung. I'd rather do more chemo than loose so much lung function. I signed an agreement which said wedge resection...maybe I will email Dr. Surgeon and just make sure...

I am thinking of writing a letter to tell Captain Adorable how I love him and what I hope for him just in case I don't make it back alright. There is only a 1% chance that I won't make it out of surgery and I am thinking these thoughts from a place of stress and fear, but yeah, I am thinking these thoughts.

Then I went to Nuclear Medicine for another test, called a Ventilation/perfusion scan (for more info, check out the Wikipedia entry). This test took quite a while and mostly involved me sitting still for 3-5 minutes at a time while x-rays were taken of my lungs. I had to breathe in Xenon gas (radioactive isotope) and an x ray was taken while I breathed it. I also had to have a radioactive isotope (did not get the name) injected and then sit still in 8 different positions while having an xray taken. Then, finally, at 3:30 I was finished. I went to the cafeteria; so sorry those people had to work New Year's Eve but I was happy to see that salad bar! I was also cheered to see the marinated tofu! :)

I forget what else I was going to say. I'm freaking out a bit. I've been eating a lot of super delicious, fatty foods. Captain Adorable keeps cutting on his guy (a plastic gorilla/abominable snowman who gets bigger when soaked in water for a few days) and sayong he's taking out the cancer and at the same time he gets very upset (almost to the point of tears) when we tell him tomorrow is January. This from the guy who would get so excited he'd jump up and down at the prospect of January. Yes, he knows his birthday is coming. Yes, he knows Mama is going to the hospital to have surgery to take out her cancer and stay in the hospital. Which one do you think has his attention?

As far as I know, and I don't know much, the left lung will not be touched in this surgery because there is no way to get to the left apex through the hole that will be cut to reach the tumors in my right lung. Plus you don't operate on both lungs during one operation. (I think...)

Not As Rosy As Last Time

We met with the surgeon at NCI today. The description of the surgery, now that he has gotten the test results, are not as rosy as last time I talked with him. He will not be trying VATS--this will be the full-on thoracotomy. I will be in the ICU for one night and in the hospital for 5-7 days total. One of the tumors in my right lung (there are 2 showing up on the scans) is right on the periphery and may be invading my chest wall. So, no VATS--have to do the thoracotomy to have a proper look. If part of the chest wall has to be removed, it will be repaired with Gore-Tex.

I am really sad that I will have to be in the hospital for so long. And I will not be cancer-free after surgery either, seeing as there is a small nodule still in the apex of the upper left lobe.

As of now I am hoping that this surgery will buy me a year without chemo.

Fun, Errands, Tomorrow

Today I took Captain Adorable to the Baltimore and Ohio Railroad Museum in Baltimore. We've been there many times before (I've mentioned it before here in this blog, as a matter of fact). We even have a membership, which allows us to get other people in for free, which is really cool. Today my (step-) cousin, his lovely wife, and their son met us there. I was quite pleased because I did not know the Holiday Festival of Trains was going on right now and it was really cool to see so many miniature trains!

Once we'd explored for a while, we ate our picnic lunch in the pitiful little restaurant, and then set off to go visit my grandma, Capt. Adorable's Great-grandma.

Too bad he fell asleep in the car on the way from the museum to her place! We were only there for an hour and he slept most of that time. Ah well, she sees him fairly often and because he was asleep, his younger cousin had a chance to shine. :) He woke up a few minutes before we left, then stayed awake the whole ride back.

Once back in our neck of the woods, we stopped at the library to return some books and pick up some new ones, which is always fun! Then off to the grocery store, where he tried to convince me to buy food for Amma (aka Oma). He knows Oma is coming soon, and he wants to prepare for her! How sweet! He wanted to buy her zucchini (which I bought for us) and celery, which I was going to buy, but paused to ask him if he liked it. He said no and then I reminded him that I am not a big celery fan. He asked me if Daddy likes celery and I said I didn't think so; we put it back. :)

Tomorrow we are going to NCI to meet with the surgeon. Yes, all of us, the care-giver I had lined up didn't work out after all...should be interesting. There is a child care area there, but I am not sure we meet the requirements (it says on the web site that one of the parents has to be participating in a clinical trial), plus you have to reserve ahead of time and I have not done that, plus of course I am almost 100% certain that he will not stay with strangers in a strange place without either parent. So, we're bringing a laptop, some headphones, and a couple of DVDs (Little Bear please help us!). I think this will be sufficient, so long as we only pop in Little Bear when the surgeon enters the room. It still definitely will affect the way the meeting goes.

I used to like bringing my son along to these meetings so the medical professional could see me in a different light--as a mother with a beautiful little child to care for, not just a patient...but now I am concerned that they only see his presence as a distraction, an inconvenience.

Ah well, we've got no good choice here. It will be fine.

My Day

I took the steroids again to premedicate myself for the CT scan starting last night. So, I was unable to fall asleep till 1:00 (am). I had to get up at 4:20 to take another dose (NCI uses a different protocol than JHH) and then up at 6:00 to shower and leave. Got to Ms. Breadwinner's place by 7:10 or so and to NCI by 7:30! So, Phlebotomy where they took 9 vials of blood and some urine, then to get an MRI. Then upstairs to talk to the nurse to get forms for Capt. Obvious and I to get extended visitors' passes. Then downstairs for the CT scan, which was supposed to happen at 11:20 but did not occur till 12:30 or so. So much for being so careful about premedicating myself. Then lunch. Then upstairs for the ECHO (ultrasound of the heart), then downstairs for an Arterial Blood Gas check (a nurse comes to draw blood from an artery to check your diffusion rate. Hurts.) Then an EKG. Then outta there at last. Asked Ms. Breadwinner to drive bc I was so tired. Stopped in at her place and gave her eldest son the crayon caddy Capt. Obvious made. Then back in the car to drive home. I was slapping myself in the face by the end of the drive to stay awake. An enthusiastic greeting from my darling Captain Adorable when I got home. Then a nap. Then food, then bed. Then got woken up by a sweet snugly little boy sleeping in my bed with me. Now awake with pounding headache.

Lost my cell phone. If you want to call me, try our home number. If you want the home number, email me. :)

Edited to add: I got home at about 5:15 in the evening and was asleep on the couch by 5:30.

Tests Tomorrow

I am going to NCI tomorrow for tests. I think the first one will be at 8:00 and the last one starts at 2:00 or something. Ugh. Thanks goodness I have some company/moral support. Ms. Breadwinner is coming along! Yay!

Meanwhile I am becoming somewhat nervous and unhappy...nothing new I suppose.

Blech. I wish it was over already. I hate all this lead up crap.

Embarrassment of Riches

Because his family celebrates both Hannukah and Christmas (both in a non-secular way) and his birthday is in early January, Captain Adorable has about 3-4 weeks of presents at the end/beginning of the year. Can you imagine? He is a lucky, lucky guy! This year in particular, the beautiful, educational, FUN presents he has received are amazing. I suppose it is because this year (he's about to be 3) is the year that the really good stuff starts. No longer do we have to worry about choking hazards and he is so much more dexterous that we can buy things he can manipulate and figure out for himself.

I am so pleased with the presents his grandparents bought for him! Fortunately, the grandparents are all sweet enough to ask me for present suggestions, so I am able to coordinate the gifts. This year he got an activity/train table; some beautiful, cool new train buildings, trains and train track; and a garage (best accessed and played with when on the activity table!), and many many little cars and trucks to go in the garage (the garage has an elevator!). He loooooves the new trains and train paraphenalia and he loves the garage and the cars/trucks, and I love the activity table that makes the other toys all the more fun and has a storage drawer. :)

My mama always told me that giving is more fun than receiving and oh she was right, but she never mentioned how wonderful it is to watch a child you love open and play with really cool toys!! Captain Adorable's joy is mine also. (Yes, I also love playing with the new toys...)

On the other hand, his birthday has not yet arrived and I am already asking Captain Obvious if we can bring another bookshelf to the playroom for storage and planning another toy culling session.

My Generous Grandma

My generous grandma has been paying for us to have a cleaning lady for over a year now. Her generous gift has impacted our lives deeply. It is surprising how significantly having a clean house affects the people who live there! I have written her multiple thank-you-notes but of course it never seems like enough. I do make an effort to call and visit often, which I know makes her happy. I thought that writing a little post about how wonderful her gift has been (and still is) for our family might be a good idea. With surgery coming up, and several guests coming to stay and help out, it relieves my mind a lot to know that the place will be clean, without having to ask the guests to clean for us. It makes me happy to know that even with me in bed recovering from surgery, I can be confident that my house looks good and smells good and doesn't have any embarrassing messes anywhere. Plus it just generally makes our lives easier to live in a clean house. And since the cleaner gets the big stuff (toilets, scrubbing) I can concentrate on the everyday stuff, and keep the house running more smoothly.

Thank goodness for Grandma.

If you know someone who is having chemo and you are looking for a way to help that person, consider the gift of cleaning. (Even if only a one-time thing.) It helps more than you know.

Lots Of Snow and A Dinner Out

We got approximately 24 inches of snow here. Captain Adorable has been having a wonderful time playing in it (so did I!) and Captain Obvious had to work very hard shoveling it, poor guy. It is very pretty, but there is still some harzardous driving, even in our neighborhood. Capt. Adorable has been excitedly pointing out front loaders and dump trucks getting the snow out of parking lots and snow plows on the road. We see them everywhere, after all.

I drove up to a restaurant to celebrate the birthday of a woman I do not know well, but I like her and would like to know her better. It was something I was looking forward to--a dinner out alone, wearing (recently purchased) make up and feeling like an adult. In the end, I think I should have stayed home. Sigh. It was not a dangerous drive, but it was snowy and icy (I fell down in the parking lot as soon as I got out of my car since I had parked on an ice sheet) and about an hour's each way. Plus, I arrived late and I do not eat meat, so I did not feel obligated to contribute to the cost of the bottle of wine and the non-veg appetizers that were ordered and consumed by the others (I think there were 7 others, besides me and the birthday girl). And yet I ended up paying about $20 over what I had ordered and consumed...and feeling like the rest of the table resented me for not contributing enough. These groups dinner checks are just awful. I don't want to do that again! I would like to hang out with her again, just feel so cornered and uncomfortable in a situation where I have to pay for food and drink that I did not consume! Ugh. I am such a skin flint--my darling Captain Obvious would tell me that's the way these things always go and I should just expect it. He's more generous than I am!

Snow Snow Snow

Captain Obvious has been in California for the past week for work (as I may have mentioned in a previous post). Today he was supposed to come home. Today is also the day that a BIG Snowstorm is hitting the east coast--all the way from New York to North Carolina! The airline canceled his flight home. And there wasn't another flight to Dulles till Monday! (BooHoo!)

Fortunately, he somehow managed to get his butt on a plane to Newark. He's driving to Dulles to pick up his truck and then home. Captain Adorable gets to wake up to his Daddy after all!!!

I have seen all sorts of reports predicting anywhere from 8-20 inches of snow by the time this storm is over. Right now there is about one quarter to one half an inch on the deck outside. So not only will Daddy be here in the morning, but there will be snow on the ground as well! What a great morning to wake up to, wouldn't you say?

His Own Bed

I should mention that Captain Adorable has continued to sleep in his own bed, in his own room. He wakes me up in the morning by running in to me with a big smile on his face. I love it!

Some Thoughts About Survival

I was at the dentist's office yesterday to get my teeth cleaned. Of course it turns out I have some cavities that need to be watched and another cap in my future...This was my first visit with a new dentist (recommended by NonFiction) and I had to tell her all about cancer and chemo because when you're on chemo it freaks out medical professionals, and I end up telling them the whole story. Anyhow, while I was telling the story, I realised how amazingly lucky I am to be alive today. I have the luxury of worrying about how to pay for dental work. I have to be concerned about caring for my teeth (I don't know if you remember, but when I discovered what my odds of survival were, I told Captain Obvious I was going to stop brushing my teeth completely.I never actually did that, of course. ). I am alive and doing exactly what I want to do so much--hang out with my child, my husband, my family, and my friends.

There is bread dough rising on the counter and I will bake it for lunch tomorrow. I am making plans for February. I am not going to give any more of Captain Adorable's outgrown clothes away for a while, because I have my hope for another child...

I am astoundingly lucky.
Or breath-takingly blessed.
However you want to say it, things are going really well for me right now.

With that in mind, here's one thing about the change of surgery date. Yes, I will be at home for a few hours on January 6, 2010, which is Captain Adorable's third birthday. Yes, it is better than being in the hospital...but, but, but it is still not great. Of course it is better than just being in the hospital, but it will still be a tough one. I can just imagine it, "Hey, good morning. Here's your cake. Love ya, off to the hospital now. Bye." OK, I am being sarcastic, but I think you get my point. Better than before, but still not great. Still, I'll take it.

Don't like that nurse or her tone, though.

Assembly Complete

The train table is completely assembled! Captain Adorable is happily playing with it as I type. It only took about 45 minutes-an hour, so I guess I could have done it last night anyhow. The instructions were friendly and the assembly was broken into lots of simple steps. I think perhaps I was overwhelmed by the number of steps last night (also I was rather tired...).

Disappointed Captain Adorable

My darling Captain Obvious is traveling for work again. He left this afternoon and he will be back late (like 11:00pm) on Friday. He's going to San Francisco. He has to travel for work much more than ever before. He also has three business trips in February. He enjoys his job, so therefore I am happy for him and I support him, but oh I miss him. And so does Captain Adorable.

This evening after dinner I tried to amuse my little one and myself (fill that empty slot when he usually plays with Daddy) by putting together the train table that Oma bought him for his birthday. I started by carrying an easy chair up the stairs to make room in the playroom for the train table. Then I carried the giant box into the room, fought it open, dragged out the contents, found the assembly instructions, and read them...and I realised that while it was not going to be complicated (well, a little complicated, but I've seen more difficult stuff from IKEA), it was going to be long. And I just couldn't face it. I decided to put it off till tomorrow, right after breakfast. As you can imagine, Captain Adorable was not too cool with this news. In fact, he was very disappointed. But I just couldn't face it. I disappointed him. Sigh. But tomorrow I will assemble it and we will build a fabulous train track together!

Once he got over his disappointment, he his usual sweet self, though. Right now he is upstairs, sleeping in his own bed while I type this to you. He slept in his own bed all of last night and for part of the night before that, so we will see how this goes...I do not want to push him out of the family bed at a super stressful time (mama in the hospital and sick and other people in his house to take care of him while mama recovers)...but I would like to go back to him sleeping in his own bed. I love him dearly and he is welcome in our bed any time he needs us, but I want the norm to be that he sleeps in his own bed.

An Email I Received Today

Only the names have been changed.

from Nurse
to Rose
date Thu, Dec 10, 2009 at 3:05 PM
subject surgery date change...

Hi Rose-

Dr. Surgeon needs to change your surgery date a bit, he has to do another case on Jan 5th that involves several other doctors and it’s the only date that will work for them. SO—he would like to move your surgery to January 7th, he is leaving town on the 11th but really feels you will be 4 days out of surgery and doing well at that point. He doesn’t feel this should be a problem; our other Thoracic attending will be here, Dr. Other Surgeon to see you. But Dr. Surgeon said IF for any reason you’re not doing well he’d cancel his business trip. The only other option would be to move your surgery to January 6th – which we can do, but it’s more difficult to coordinate for several reasons, one being it’s not our normal OR day – so we have to plead for a OR room and plus we need to change clinic appointments for 7 patients – but it’s a possibility. Please let me know if the 7th will work okay– or the 6th if not.

Sorry for the change – I hope this will work okay.

Thank you,

Nurse



Nurse, BSN

Clinical Nurse Specialist

Thoracic Oncology- Surgery Branch

Explanation

I've been asked by several people why I am angry (see the post just prior to this one). I am angry because there is really only one day of the year on which I do not want to be having surgery or be in the hospital and that is Captain Adorable's birthday. January 6.

This year he is turning 3 and we've been talking about his birthday for months. He tells me all the time that he's going to have cakes at his birthday. He asks me several times a week if it is January yet. I am going to miss his birthday. His third birthday. This is the first time he's been cognizant of having a birthday and when his birthday is. his is the first big one. This third birthday I've been really looking forward to. I don't care about holidays or New Years or even my own birthday, but this one, yes I care. I really, REALLY care.

And the fucking idiot nurse fucked it up. And now I'm going to be in the hospital (maybe even the ICU) on my darling son's birthday.

Yeah, yeah, we can have a birthday party for him another time. And we will. Everyone says Captain Adorable won't know. Well, I think he will know. And even if he doesn't, I will know. And it sucks.

And I am a little bit scared of dying. It is a risk of surgery, after all. Especially a surgery like this where they are open up my chest and cutting my lung. A very small risk. But wouldn't it suck if I died on his birthday?

Anyhow, the more I think about this and write about this, the more I get caught up in the anger and dire predictions, so I think I am going to stop now, before these tears of self pity roll down my cheeks.

Surgery Soon

I have not written about this because I feel angry. I don't want to get all into it right now, so you will have to content yourselves with a short update.

I am going to be admitted to the hospital at NCI on January 4, 2010. I will have surgery on January 5, 2010. The point of this surgery would be to remove the two visible lesions in the upper lobe of my right lung. The surgeon hopes to do VATS (Video Assisted Thoracic Surgery) but may have to convert to full on lung surgery, which will require him to surgically break one of my ribs (and remove part of it!). I hope VATS works out, but I am prepared for conversion.

Home and Tired

I think we've been home for a little over 24 hours now. I am sitting in the family room, listening to the rain pouring down on the sky lights. I am tired, tired, tired. My poor Captain Obvious had to go to work today! Can't imagine how draining that must have been for him. I have hopes of posting pics and more about our vacation at some point, but I am going to bed now.

On The Way Home

We're in the airport Houston, waiting for our connection. I'm tired, having been up late last night getting everything packed for travel and up quite early (5 am) to get the plane.

Yesterday we had a fabulous time in the pool/thermas of the hotel where we were staying at Volcan Arenal. Inevitably, check out time rolled around. Boohoo. Next my FIL, Captain Obvious, and I went on a fabulous (but wet, since it was raining) zip line adventure. That was awesome and I'd recommend it to anyone. FIL's wife (Lita from now on) and Capt. Adorable did some hiking and hung out with another kid who was too young for the zip lines.

I will write more about the vacation once we are home, but here's one thought. I enjoy Costa Rica quite a lot, but I really hate the stupid bilk-the-tourist games that are constantly played. I think next time we might try somewhere else...