Saturday, February 27, 2010

Humble Thanks

Captain Obvious have been out together for the past two nights. My mom is here and she has been staying with Captain Adorable. We've talked a lot about the way that cancer has or has not affected me/us. We've talked a lot about how much help we have gotten during this last 2.5 years. As Captain Obvious said, "we could have gotten by with less help than we got, and we could have done better with more help than we got, but overall we got a lot of help." So many people have helped us in big and small ways. We are so grateful for the help you have given us. We think about the help you have given us (even small help, like the tech who recognises me at the CT scan place at JHH and a little exchange of words with her can take my mind away from the fear and stress of the tests...) often. Of course I cannot begin to talk about the contributions of parents and grandparents... Both of us are amazed and astounded by this journey and this love. I send you all my humble thanks.

Saturday, February 20, 2010

New Mobile Phone

Don't know if I mentioned this, but my sweet husband bought me a new mobile phone. I am once again phony. Haha. Gimme a ring--it is still the same number.

Too Much TV

Lately (for the past 2-3 days) I've been allowing Capt. Adorable to watch waaaay more tv than usual.

I have several excuses:
1) We've just discovered Bob the Builder, which is a darling show with kind people who are polite and espouse eco-friendly concepts. And drive trucks and fork lifts and cranes and front loaders all over the place all the time...
2) We've just discovered that Pingu is on the instant play on Netflix. Another sweet, funny,show with short episodes and delightful characters. Pingu concentrates on the value of family.
3) Watching tv is one of the few ways to keep Captain Adorable out of the "work site" (as we've been calling the family room during the cosmetic renovations) when Daddy is actively sanding or painting. (We don't want him to inhale that stuff!)
4) It is cold and snowy outside; not so easy to take our usual walk down to the water or spend a few minutes blowing off steam at the platground.

But the real reason is:
5) I spend too much time on my computer.

I have lots of explanations for that. Whenever I am on chemo I get lots of time to myself and I tend to spend lots of time online for entertainment. I've just had surgery and I am still recovering. I am in the phase right now when I've started weaning myself off the computer but have not really done it yet. I no longer check the computer first thing in the morning, nor do I carry it from room to room anymore. However, in the afternoon, when I am tired and a bit overwhelmed (Captain Obvious was sweet enough to let me have a nap this afternoon!) I let Capt. Adorable watch another one and another one and another one because I want to play on the computer. Then I look up and it is 3 hours later and I am very disappointed in myself. Also, the longer I let him watch, the harder it is to tear him away. We both lose when I go overboard with the tv.

Today we went sledding, moved around the furniture in the playroom, built a block castle and a block car ramp, made lunch, and for the rest he spent hi time playing in the work site while Daddy worked and watching tv. I've got to step up and do a better job.

We need more kids to play with. Having other people around helps us both. (And, yes, Leia, I did copy your post title. Imitation is the sincerest form of flattery.)

Friday, February 19, 2010

3 Times In 2 Days

I realised that I've been doing a lot of baking and cooking lately. I like to cook in general, but lately I've begun baking more. Yesterday I baked a bread, which I do often. In fact, I bake all of our bread now. This way I know exactly what is in it, plus it a lot cheaper than buying a similar bread in the store. I have posted about this before, but just in case you are interested, I use the recipe for No-Knead Dutch Oven Bread published by Mother Earth News. I've linked to the second page of the article here, but if you are interested in baking and you are not already a baker, read the article for lots of extra info. I think it is perfect for morning toast, lunch sandwiches, hummus dipping, brie spreading, soup soaking, and all the rest.

Today I baked chocolate chip cookies from a recipe in the America's Test Kitchen Family Cookbook. Captain Adorable helped me and they were supposed to be a treat for both him and Captain Obvious, who has been diligently working on the family room (just tonight he painted the mantle white, then had to sand it down again because there was still lacquer preventing the paint from sticking in a few spots and repaint!). They are pretty good, fabulous chewy texture, but...I don't know, maybe they need some nuts? Or the fact that the chocolate chips are weirdly flat (Ghiradelli) affects them or something...

Tonight I made soup beans and corn bread and steamed broccoli for dinner. Had planned to go out to dinner with a friend, but she had to cancel on me at the last minute because of an emergency at her house. :( So, I wanted to come up with something yummy to go with the beans I made yesterday. Did I tell you that my New Year's Resolution was not to buy canned beans anymore? Two reasons: better taste and to avoid the BPA plastic used to line the cans. Anyhow, we don't eat beans that often, but during recovery from surgery I did buy canned a few times. But with coaching by NonFiction over the phone, I pulled it off and the beans are fab and I made enough to freeze for quick dinners in the future.

So, the corn bread was good (hearty yet light! much more Northern than Southern) and used some of the lovely grass-fed organic buttermilk we had in the fridge. Except that the medium-grind on the corn meal was a bit intense for my big Captain. Next time I will have to buy finely-ground corn meal. It was lovely to put those yellowy squares steaming into shallow blue bowls with beautiful soup pinto beans...mmmmm...gorgeous green broccoli on the side...

So, back to the point. I baked 3 times in 2 days. I think I get some type of prize for that--perhaps a gold star?

Future plans include baking my own pitas and focaccia...will keep ya posted, as per usual.

Wednesday, February 17, 2010

Fun Outside The House

Quick update because I have got to go to bed. Sleeeepy. Captain Adorable and I have been getting out of the house and into the car and going places to have fun this week. Amazing, the power of a car, a tank full of gas, and friends to hang out with! Also a little tiring, but in a good way.

Tomorrow the plan is to work on shoveling the sidewalk in front of our house (even if I do not actually get much done, Capt. Adorable will enjoy himself) while the cleaning lady is here (she didn't come last week because of the snow, so we need her. She will have a bit less than usual to do since the family room is still in process and the dining room is so full of furniture she cannot begin to vacuum in there, but that's ok. Then I'll bake the bread I set to rise this afternoon, and then maybe we will go to the local Olympic swim center...or the indoor play area at the local mall...we will see. Also have to pop by the library and drop off a book that has been due since Jan 19!!!! Aaaah!

Next week Capt. Obvious is off to Portland, OR. We will miss him, but thankfully, Oma (or, as Capt. Adorable says, Ama) is coming to stay for a few days. This will be the first time I've had a visit with her while NOT being on chemo or recovering from surgery in 2 and half years, so I am really looking forward to hanging out! I hope to be able to explore some local attractions with her and have even been considering arranging a grandma play date (hehe) with Non-Fiction's mama. I think they'd have a nice time together. We will see.

Saturday, February 13, 2010

Moving On

To other aspects of life. :)

The snow is still outside and it has been cramping our style for quite a long time now. We've gone sledding so many times it is boring. The driveway has been shoveled. The bird feeders have been filled. The Captains even built/dug what they call an ice cave in the snow bank that borders one side of the driveway. But wow, getting the little one all dressed up to go out is rather a bother! And if we go out twice a day, that's 5-6 pairs of pants in the wash (he refuses to re-wear them after they've gotten wet, even when once they are dry again!) since we put 2 pairs of pants on him every time we go out to keep him warm. At this point we can't go to the play ground since it is covered in 2-3 feet of snow and we can't even take a walk since the sidewalks are all snowed under (no we haven't dug ours out either!) but one lane of the road if clear and people are driving fast on it now so it is dangerous to go for a walk with the little one.

Poor Captain Adorable is starved for the company of other children. On the other hand, Captain Obvious has been home for work because of the snow and as a result we've gotten to spend quite a lot of time together here in our new house. In fact, we've spent so much time here relaxing that Captain Obvious has found some serious motivation and has made me very happy by beginning some cosmetic renovations on the family room (with kitchen soon to follow). Yesterday he installed a utility sink in the basement, giving us a proper place to clean up after painting. We moved everything out of there and Capt. Obvious put down tarps and put up plastic sheeting to protect the rest of the house from the dust being created in there. Where is all the dust coming from? Well, he's discovered that it is not too hard to scrape the textured ceilings down some! They are not totally flat and smooth but they look much, much better than they do right now!

We're also planning to paint; the walls, the ceiling, and the trim. We realised today that the ceiling is actually painted light beige, so a nice white ceiling will help to lighten the room considerably. Plus he managed to remove the heavy, dark (sloppy) built-ins on either side of the fire place. I am so happy! Amazing what a little cosmetic adjustment can do.

The good news for Captain Adorable is that next week we are expecting a visit from Ms. Resourceful and her children, as well as a visit to some other friends. Maybe the week after we'll get to the train museum...and then Oma will be here (although Daddy will be away again, boohoo). So we've got a lot to look forward to. We've had fun making valentines together over the last few days. Just popped them in the mailbox today, so they won't go out till Monday, sorry!

Wednesday, February 10, 2010

What I Fear, What I Want

I am NOT afraid of no longer being a patient!!!

1) Being a patient sucks and I would be happy to stop!
2) I am still a patient. I am not going to be saying goodbye to hospitals and doctors for quite a while. In fact, my next appointment with my oncologist is scheduled for May 5. About 3 months from now. Not that long! I will have a CT scan on that day, so I will get to go through the whole pre-med routine (prenisone, blah) and I get to have an IV (oh yay).
3) I am planning to do a couple of clinical trials at NCI in the upcoming months. I've not written about them because I do not have much information to share. They are both immunological trials. Yeah, I'd get a vaccine against cancer. Very proactive.
4) Who knows if the cancer will stay gone. It could be that I have to start chemo again after the results of my CT scan in May.

I AM afraid of:

1) What's next. Get a job? This is a terrible economy. I have plenty of education but not much recent experience. Brush up my resume? What am I even qualified for? How much energy should I even put into this, seeing as I am still really in treatment and there is a good chance that the cancer could come back.
2) Leaving my darling Captain Adorable.

I WANT to:

1) Be with my son and my family as much as possible. I have lots of plans for playing with the alphabet, some science (specifically: botany), music, gymnastics, and hopefully a trip to Tennessee.
2) Rest and heal. I am less than 6 weeks out from major surgery right now. I get winded quite easily. I need time to heal. I am less than 3 months from chemo. I still have side effects from that. (My side effects include: neuropathy, gasterointestinal problems, very dry skin, lack of libido, high stress level which results in exhaustion, insomnia, teeth grinding, and head aches.) I need time to heal from chemo as well.

This journey is far from over. This is not the end of my cancer fight, nor is it the end of this blog. ;)

Monday, February 8, 2010

Tentatively Overjoyed

Just talked to my oncologist at JHH. She said that there is currently no need for further chemo. Of course I will have to be monitored closely (meaning a CT scan every 3 months, starting May 5), but the really big news is I am in remission.


I greeted this news with tears. Not of happiness, surprisingly enough, but of fear. Fear of how my life will change. Fear of new obligations and changing status. I find this a little strange, but Captain Obvious pointed out to me that for the last two-and-a-half years I've put all my energy into fighting this, surviving during the fight, and taking care of my family. It is difficult to imagine an existence in which I will have a job other than being a patient. Yeah, I'm fucking crazy.

I can't say goodbye to hospitals and IVs and drugs for quite a while yet...but the idea of never doing chemo again is making its way into my brain and it feels wonderful.

Saturday, February 6, 2010

Snow On The Ground

It snowed and snowed and snowed here for hours yesterday and all night. It is still snowing now but the temperature has dropped, so the flakes are small. Yesterday afternoon we drove to the grocery store and on our way home the snow was really much more like rain since it was still so warm (40 degrees or so). From inside here it looks like we've got something like 14-18 inches on the ground. The National Weather Service is calling for another 5-9 inches of accumulation today and only up to 1/2 inch overnight.

The plows have been running, and I can see asphalt on our street. Captain Obvious has a lot of digging to do, partly because our driveway got plowed in (like all the other driveways). We've got electricity and water and the gas fireplace is on, making the room where I am sitting nice and cozy. Captain Obvious is standing in the kitchen drinking coffee and gazing out the window. Captain Adorable is sitting at the table, eating waffles (organic but frozen) and listening to his current favorite album (actually mp3s), Ladysmith Black Mambazo's Gift of the Tortoise. In a little while they'll go outside and start shoveling.

Friday, February 5, 2010

Winter Storm Warning

Well, as you probably know, it is going to snow in the mid-Atlantic today and tomorrow. In fact, it is snowing outside as I type this. Some people are getting pretty freaked about it, and I personally would like to go to the grocery store and buy cheese and maple syrup before the real storm starts, but once again I am struck by how very lucky I am. My beloved husband and child are here at home with me. We have plenty of food and a gas fireplace (and a gas stove) to keep us warm if the electricity fails. If we absolutely have to go somewhere, we have a 4 wheel drive vehicle. We have warm boots and coats and gloves to wear outside to play in, and last evening we even bought a (overpriced) sled to play with. We already had one 24" snow fall this winter (on Dec. 19, 2009), and we all survived that (with no loss of electricity), so I am pretty convinced we will be just fine. And maybe even have some fun.

Here's what the National Weather Service says (in part):




Wednesday, February 3, 2010

Helping Others

I recently heard the story of a 30 year old woman who was just diagnosed with cancer. I want so much to help her, to share with her the lessons I have learned, the pitfalls to avoid. I want so much to help her advocate for herself. I have so much, well, I guess the best words are love and hope that I want to communicate to her. I wish she would call me.

But she is not going to. (She has been given my number.) I am going to have to hope for her from a much less-invested perspective just to protect my own heart. My path is mine; her path is hers. We've made different decisions and I have no right to input into her life (seeing as I am a stranger and all). And yet I want to help her so badly. I ache to hear her voice and to help her to navigate the system. The beginning is so hard and so frightening. I could help so much. Sigh...

Please join me in sending her positive thoughts and love and prayer.

Post-Surgery CT Results

All good news! (And the visit was quite easy and went smoothly. I was nervous and grumpy for no reason. The roads were clear --started hearing snow plows at five in the morning. We left at about 6:40 and we were there at about 7:30.)

The lung is completely expanded. The pathology reports are back and all the margins are negative. Dr. Surgeon said he does not even think we need to do chemo. (Have not heard from the oncologists about this yet, though...)

One piece of bad news/good news: he said that if it does come back he will be happy to take care of me again. I asked him how many more thorecotomies he thought I could have and he said, well you have plenty of lung tissue. Aaaaaaaah!

Tuesday, February 2, 2010

Post-Surgery Follow Up

Tomorrow (Feb. 3) is my first post-surgery follow up visit. I have to report to phlebotomy at 7:30. Then a chest x-ray and then at 9:00 a CT scan. Then meet with Dr. Surgeon. I can't really imagine what he will tell me that I do not already know. Whatever. I will play the game and sit for 45 mins-2 hours waiting for him so that he can tell me I am recovering well. I choose to submit to this little formality, despite its supreme inconvenience for me and my family. (Yeah, I'm a bit grumpy about it, can you tell?)

Captain Adorable and Lita are coming with me. Would be much, much easier to leave them home but I'm not supposed to drive, make things just a bit more difficult, it was snowing when I went to bed tonight (not asleep yet, though, as you may have noticed) and predicts 3-5 inches accumulation. With clear roads it is a 40 minute drive, but tomorrow we are going to leave at 6:30. Plus once we get there Lita has to go through security because she does not have the extended visitor's pass that Capt. Adorable and I have. I am exhausted from, well, recovering from a thorecotomy less than 4 weeks ago, being the mother of an active kid, several days without naps, and a couple of sleepless rights.

Of course I am once again taking the lovely Prednisone because of my allergy to IV iodine. Blah. Makes it hard for me to sleep at a time when I really, really need rest. I have actually set the alarm to get up at 2:30 to take the second dose. I'm sure a lot of sleeping will take place after that one.

Captain Obvious is still in Colorado and I miss him so much. I know our little one does too. His return, however, does not really mean rest for me, as he will arrive home at one in the morning on Wednesday night/ Thursday morning and then go to work on Thursday at the usual time, so I expect that the first real rest I will get is Thursday afternoon when the mother's helper comes. We are so lucky to have her!

Monday, February 1, 2010

Present, Painting, and Photos

Today we were at Costco, courtesy of Lita, who drove us there (because I still can't drive, of course). One of the things we bought was a dress for Ms. Resourceful's daughter, who is having her third birthday in about a month. Maybe because there was so much talk of birthday presents, Lita suggested that she buy a birthday present for Captain Adorable from Grandpa and her. I was happy that she was willing to go to a wonderful toy store near our house to look around. I was also happy that she decided to buy the easel (and art supply kit) I pointed out. Captain Adorable was unconvinced in the store, preferring to play with a wooden castle that had intriguing little ladders.

But when we got home we had to assemble the easel, which immediately made it much more interesting and attractive. Then, once he realised there were paints for him involved, he really could hardly contain himself, and was even unable to join us at the table for lunch (it was past 2 by the time he finally ate!). Once he had eaten something, I allowed him to paint, and paint he did! He was enchanted, inspired, and quickly made 3 fabulous, bold paintings. He wanted to paint again later, when I was in bed for a rest, but Lita did not want to supervise him and said no. I know he will be extremely happy to pick up his paint brushes again tomorrow and the day after and the day after. :)

One of the fabulous things about the art supply kit is that it came with these spill proof paint cups that also have air-tight tops, so you can just leace the paint in there! Only have to wash the brushes before moving on to another project. Genius.

We are covered in snow and it is very cold outside, so not much chance of real outside play for a few weeks yet. This wonderful easel will come in handy for entertainment for quite a while!

I have pics, but I forgot to get them off the camera. You will just have to wait, blog.

Speaking of pics, had a great time looking at pics of our recent trip to Costa Rica with Lita. I hope we get to do it again next year. I also showed her pics of me from birth-approx. 17 years old. My fabulous aunt put together a CD with photos of me that she had taken over the years. Lita agreed with me that the photos themselves are so beautiful and Oh how like me my son looks! :D