Thursday, December 31, 2009

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 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...)

Wednesday, December 30, 2009

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.

Tuesday, December 29, 2009

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.

Monday, December 28, 2009

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.

Sunday, December 27, 2009

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.

Friday, December 25, 2009

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.

Thursday, December 24, 2009

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.

Tuesday, December 22, 2009

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!

Friday, December 18, 2009

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?

Wednesday, December 16, 2009

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.

Monday, December 14, 2009

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...).

Sunday, December 13, 2009

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.

Thursday, December 10, 2009

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, BSN

Clinical Nurse Specialist

Thoracic Oncology- Surgery Branch


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.

Sunday, December 6, 2009

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.

Wednesday, December 2, 2009

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.

Tuesday, December 1, 2009

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...

Thursday, November 26, 2009

Happy Thankgiving!

We didn't go snorkeling. I awoke to a gorgeous sunrise at 5:48am. The Captains and I were on the beach by 6:15. We played in the waves, we dug in the sand, we saw some iguanas and squirrels in the trees. We took a hike to other, less populated beaches (meaning only 2 people instead of 10), where we saw beautiful rocks and some cute little crabs scrabbling around on the rocks. We came back, collected the rest of the family, and went to breakfast by 9:00. After breakfast we saw some monkeys, an iguana, and a hummingbird. We went back to the room. I tried to get Captain Adorable to take a nap but he was not into it and instead I fell asleep. I woke up at 1:00, having slept for about 2 hours! Then the Captains and I went to the pool, to play with another little guy who we met last night at dinner. The boys had fun together, but the other parents did not seem too interested in hanging out, so I did not try for a repeat meeting time. Then we came back to the room and Capt. Adorable took a nap. I sat on the veranda and read emails and talked and listened to the waves. Captain Adorable has just woken up. The whole family is on the veranda now. Bob Marley is on the mp3 player (Lively Up Yourself at the moment). There are chips, cheese, bread, and water on the table. We'll probably pop out some beers here pretty soon.

Tuesday, November 24, 2009

From Coco Joe's

This morning the Captains and I hit the beach before 7:00. :) Captain Adorable was sooooo happy to finally, finally, finally be at the beach. I was happy too, despite the early hour. The constant screams and squeals of joy he emitted for the first hour were golden to my ears. The beach is totally natural, unspoiled, and gorgeous. There are no buildings, no billboards, and barely any people in sight. There are beautiful birds and plants and flowers. There are coconuts all over the place.

Coco Joe's is the name of the bungalow we moved into today and where we will all stay for the next 4 nights. There is a big porch/veranda here. The ocean is steps away. On the table are bread, cheese, wine, and olives. Leonard Cohen on the mp3 player.

Maybe tomorrow we'll go snorkeling.

Monday, November 23, 2009

From Montezuma

Hey everyone, I'm in Montezuma, Costa Rica with the Captains and my FIL and his wife (yes, a different person than the one I call my sweet MIL here in this blog). We travelled on airplanes what seemed like all day on Sunday and today we travelled in a private taxi and on a ferry and on the taxi again to reach this hotel. It is on the beach. Like, I can hear the waves from where I am lying on my bed with the door and all the windows closed. Should be fun tomorrow!

Health news: no firm date for surgery yet. Off chemo for now, but will do one more session when I get back (so will start Dec 2 or 3). I feel good right now but do not look forward to this last session of chemo. I am getting very tired of chemo and what it does to my body.

More later. Captain Obvious needs to watch a basketball game, so he needs this computer.

Wednesday, November 11, 2009

Preliminary CT Report

If you don't feel like reading the report, the good news is: "stable to minimal growth." Yes, indeed, good news indeed. I cried with happiness there in the office when the onc told me! And now, in case you are interested, I retyped the report for you (and added a couple of comments in italics). Enjoy!

** Preliminary Result ** Preliminary Result ** Preliminary Result **

Exam: CBW 5011 -- CT ABD and Pelvis w/Contr CT -- Nov 11, 2009 14:08

Clinical History: Non-small cell lung cancer (Which of course annoys me since I think all the oncs now agree that I have Cancer of Unknown Primary, but whatever)

Comparison: 8/12/09

Technique: CT images of the chest abdomen and pelvis were obtained following the uneventful adminstration of IV contrast. The patient was also given oral contrast.


Chest CT:
Multiple bilatera; pulmonary nodules, which appear either unchanged or minimally increased in size since prior exam.

The largest difference is in a right lower lung mass measuring 2.2 x 1.8 cm (series 4: Image 47), previously 1.9 x 1.5 cm. Right upper lung mass now measures 2.0 x 1.8 cm (previously 1.7 x 1.5), series 4: Image 34. The remainder of the previously noted nodules are grossly unchanged.

The tracheobronchial tree is patent. Small loculated pleural effusion right posterior medial lung base, stable. Suggestion of right lower and middle lobectomy. (No shit, huh?)

Thyroid gland is unremarkable. No evidence of bulky supraclavicular, axillary, hilar, or medistinal lyphadenopathy. Focal calcification in the subcarinal region, likely calcified medistinal lymph node, stable since prior exam. Minimal calcification thoracic aorta. No evidence of pericaridal effision.

Abdomen CT:

Liver, gallbladder, spleen, bilateral adrenal glands, and pancreas appear unremarkable. Multiple unchanged hypodensities in the left kidney which likely represent cysts. Right kidney is unremarkable.

Stomach and small bowel appear unremarkable. No evidence of bulky retroperitoneal, or abdominal lymphadenopathy exceeding 1 cm. Celiac axis, SMA, and bilateral renal arteries are patent. Portal vein and splenic vein are patent.

Pelvis CT:

Urinary bladder and uterus are unremarkable. The left ovary measures approximately 4 0.1 x 2.5cm. Right ovary not visualized (it came out when I was 16). No evidence of bulky inguinal or pelvic lymphadenopathy. Large bowel appears unremarkable.


1. Multiple bilateral pulmonary masses, which appears to be stable to minimally larger than on prior examination.
2. Multiple renal cysts.

Feeling Rushed

There are so many things I have wanted to write about recently. I've been thinking a lot about Society. Race, class, the economy, neighborhoods, cultural attitudes, neighbors who do or do not fit in with my world view, my religious views, family, friends, education, travel, literacy, environmental impact of subdivisions on the integrity of the Cheasapeake Bay. You get the picture. I'd like to share more, to write about these things as a means of sorting out my own feelings/thoughts and I have been So Very Busy lately.

Here's an excerpt of an email I sent my Dad this morning:
We hired movers (so-and-so couldn't make it after all and such-and-such couldn't do it after all and other people were out of town...) to empty the pods. We paid them for 3 hours but they got it done in 2! There are still many unfinished projects around the house (I can't put things in the cabinets in the dining room because the cabinets will fall over unless they are attached to the wall, and Captain Obvious has not been able to get to that, for instance) and our clothes and linens are not unpacked yet. I still need to clean the cabinets in the laundry room and the bathroom, so many things are still waiting to be unpacked. We are still living out of suitcases. We closed on Friday, the movers came on Sunday, the pod was taken away on Monday and the radon remediation people arrived on Monday. Tuesday Captain Obvious went back to work and Captain Adorable and I spent ALL DAY driving around running errands (get the last things out of the house in Takoma Park, go shopping for new bathmats et cetera, go to the dentist, take back one last library book to the library where we used to go, drive past the old house since we're so close, stop at the drug store to pick up my prescription, the finally home to cook dinner.) We left at about 10 and got home about 6. Today I'm going to spend most of the day at Johns Hopkins. When I get home we are going to meet with the contractor to talk about getting the floor joists and the door fixed. Tomorrow our first house guests arrive. Fortunately, they say they are willing to work, so maybe next week we will have our clothes out of the suitcases. Woke up this morning to a wet bed (pee). We've got to get Captain Adorable's bed set up!

In addition, I hope this is not too much information, but last night i finally pooped. First time since Nov. 5! I feel much better now, as you may imagine.

It is harder to move with a child because although he is very cooperative and helpful, and will play by himself for long periods of time, he does still need attention and activity. We've still not gone to either of the neighborhood playgrounds, but we have walked down to the water twice (well, Capt.Adorable and I, Capt. Obvious stayed home to work) and Capt. Adorable loves walking in the leaves!

In addition to the above, I've just stopped chemo but now I'm on steroids to prepare for the CT scan today.

I would add that today while I was at JHH, the captains ran errands and worked on putting furniture together, so we have a place for the house guests to sleep! They also discovered that there is a leak from the sink drain pipe from the powder room on the main floor. So, now we've got to come up with money and time to do that project. Guess we know what our friends are going to be helping with during their visit! Thank goodness for family and friends.

Yes, feeling a little rushed. Haven't had time to post about my thoughts.

Tuesday, November 10, 2009

JHH Appointment Tomorrow

Now that things with the house are calming down, tomorrow is my appointment at Johns Hopkins Hospital. I am going to have blood work, get a CT scan, and then talk with my oncologist. The Captains are staying home together.

I am hoping for a good result tomorrow, but I am worried. I guess I am worried before every scan. I just realised that I forgot to take my steroids (prednisone) starting at 12:50 this afternoon. Ugh. Anyhow, the medical oncologist on call this evenning called me back VERY promptly and advised me that I can take the steroids on a slightly modified schedule and still be fine. (As I think I've mentioned before in this blog, I am allergic to intravenous iodine, and that is what is used as contrast for the CT scans, so I have to take steroids to prepare for the scan. The steroids have side effects of their own, but while they are unpleasant, they are not too bad. I do kind of dread taking them, so maybe that's why I forgot today.)

Will update this blog after I get home tomorrow afternoon.

Saturday, November 7, 2009

New House!

Well, some good things happened and we closed on the house as scheduled on Nov. 6. YAY! I am so happy! I am also rather busy, with cleaning and unpacking, so more later. My chemo keeps me so tired these days.

I have a big day of appointments at JHH on Wednesday. Another CT scan. We will see how my cancer is responding to this low dose of chemo.

Wednesday, November 4, 2009

On The Phone All Day

Sigh, sigh, sigh. Well, as is quite common, we're experiencing some unexpected unhappiness here at the last minute before the closing on the new house. Blah. I am not going to go into the details, but Captain Obvious has spent days trying to resolve some issues and today I spent all day on the phone (except for about an hour in which I sifted clay) also trying to resolve the issues. Fingers crossed! We might just work everything out...but I wouldn't be at all surprised if it went the other way...


In other news, this afternoon an interesting thing happened. Captain Adorable left the building site to walk up the hill to the house because he needed to poop. He did not tell anyone where he was going--just hiked himself u the hill, went in the house, and did a poop...much to the surprise of his Opa, who was on a business call at the time he realised what was going on. Opa quickly asked if he could call the person back and helped Captain Adorable clean up (he had already dumped the potty, just needed to be wiped!). I arrived (having missed my son down at the building site) just as the resolution was occurring. I was very surprised! And proud! That my not-quite-three year old walked all the way up the hill to do a poop in the potty. I guess I'm going to have to take that thing to Costa Rica. ;)

Tomorrow we drive back to Maryland. Hopefully on Friday we will close on the new house. Keep your fingers crossed for us.

Monday, November 2, 2009

Last Week In Tennessee...

...I hope. As long as everything works out ok, we are going to close on our new house on November 6 (that's Friday). I really, really hope everything works out ok. We are having a marvelous time here in Tennessee, but both Capt. Adorable and I miss Capt. Obvious something terrible and I really want to be in my own house with all my own stuff around. :)

This is the last round of chemo before our trip to Costa Rica for Thanksgiving and surgery in December. It is making me rather tired. I wake up tired, I go to bed tired, I spend the whole day tired. I look forward to the end of next week when I can stop taking the chemo and begin to feel better. However, even though I am complaining, this is still way better than the IV chemo.

I have been experimenting with cutting out Capt. Adorable's afternoon nap again. I think this time it is going to work out. If he naps, he goes to sleep so late (10 or even 10:30!) and if he does not nap he goes to sleep at a reasonable hour (7:30 or 8:00). He does not wake up any earlier, either! We will see how this all settles itself out.

Monday, October 26, 2009

Good Helper

Start the day off playing with your uncle's old toy tractor. (Those metal toys really last!)

Chill with your favorite dog.

Once your mama is ready, down the hill to the building site. Help Oma by using the hose to mist the render on the straw house so that she can apply the next layer. (Notice the red color of the render? (Very similar to the helper's hair color!) It gets that color from the local clay. The clay from the building site is being used as one of the ingredients in the render.)

Adding (pre-sifted) clay to the mixer to make the render.

Opa looks on while more ingredients go into the mixer.

Once mixed, the render goes into a wheel barrow.

Playing in the sand heap (sand is another ingredient of render).

A hard working boy needs a nap!

Tuesday, October 20, 2009

In Tennessee!

OK, I'm up way too late and I know it. I am so tired what the hell am I still doing up? Maybe it just feels so good to not be sitting in a basement tytping this that I am inspired to stay awake a bit longer and a bit longerr...

Captain Adorable is still snotty and still snoring (and still very much insisting on sleeping "wif mama" despite his earlier insistence that he would "sleep in my own bed") so I am not looking forward to getting into bed to my own little snore factory...then again, that is a rather lame excuse. I am feeling much better, much less snotty, but still coughing a good amount. 3 doses of Tamiflu left. Onc said that the weird note in the xray report was simply that--a weird note and not to lose any sleep over it. CTs are far better than xrays and none of my CTs have ever shown anything like that.

I am happy to be here in Tennessee and these next few days may turn out to be too good to go back to Maryland till we are ready to move into the new house...we will see.

Saturday, October 17, 2009

Only One Day Late

Well, we went to closing on October 16 instead of October 15. (The buyers were 30 mins late.) I am still very annoyed that the whole thing was delayed, but it seems it was not the buyers' agent's fault after all. The day of closing was quite, quite hectic, and we could not have done it without the help of my sweet MIL. Thank goodness she was able to come down and help us out!! We were on time to closing, mostly because of her help.

We are now staying in the house of friends. I started coughing yesterday but today I developed a fever as well. It got up over the magic number (100.5 is the magic number and my fever was 100.8) so I called my oncologist and she asked that I go to the emergency room. I took Captain Adorable, since he started with the same symptoms as me and also had a fever (100.2). We were at the hospital from like 5:45 or so till about 9:45. During that time I had a chest x-ray, a nose swab, a throat swab, my blood pressure and temp taken twice, got an IV (blood taken) and gave a urine sample. They really worked me up. The tests showed my counts are fine, and do not show me as positive for the flu or step. So, I got to leave!

Unfortunately, my little one did not fare as well. The tech who came to do his nose and throat swab was too aggressive and not only hurt him a lot, but also caused quite a fountain of a bloody nose. This after both parents calmly explaining to him what would happen and then it would feel weird but not hurt. Ach. I know she did not mean to, but damn, she could have been a little more gentle and careful. He is only two. (I was careful to control myself and not cry, but I was very close. Sob.)

However, if you want to get good fast service at an emergency room, show up as a cancer patient on chemo with a fever and a child. You will get seen quickly!

Also, weirdly, the chest x-ray showed something we've never seen before. The report says, "Prominence of the ascending thoracic aorta suggest either tortuosity or aneurysm." Uhm, wtf? I'm going to talk to my onc about it and will update when I find out anything.

Wednesday, October 14, 2009

Closing Postponed

So, we are not going to closing on this house on Thursday, Oct 15 after all. I do not know exactly why and apparently our real estate agent can't get a straight answer out of anyone. We do know that the buyers' earnest money check was never deposited. We think that the buyers' agent is the person that effed up.

This affects us deeply because:
1) We are living in a house with absolutely nothing in it (we have 3 kitchen chairs and 2 mattresses). We had to move completely out in order to keep our end of the bargain.
2) The contract on the house we are buying is contingent on selling this house ON THE FIFTEENTH OF OCTOBER. Not just on selling it sometime soon, but selling it on that specific date.
3) The lock in for the rate on our mortgage for the house we are buying only lasts a certain period of time.
4) Because the buyers' earnest money was never deposited, we don't even have any leverage. If this deal goes bad, they don't even lose their earnest money. We lose the window of time in which we can still sell to a first-time home buyer who can close on the house in time to qualify for the $8,000 tax break from the government...and suddenly there are no buyers for our house...

So, worst case scenario, when we ask the sellers of the house we want to buy to extend the time period in which we can close on the house we are selling, they say no and then everything comes crashing down around us. No new house. No awesome mortgage rate. We're screwed. We have to move back into this house! UGH!

OK, that probably won't happen, but it could and it scares the shit outta me.

And guess what? The pay for this effing buyers' agent comes from US!!!!

I have decided that I am going to cause a stink. I am going to ask for bank records which prove that she faithfully executed her fiduciary duty (deposited their check properly). If she cannot prove this, I am going to ask that her commission be reduced. I know, I know, I probably can't get any satisfaction, but dammit at least she'll hear about it. At least I will have the satisfaction that she will hear about this.

Saturday, October 10, 2009

We Don't Live Here Anymore

Holy Moly we don't live here anymore. Almost all our stuff is in the POD in the driveway or in the garage, waiting for the next POD. No pictures on the walls, no furniture except the kitchen table, the dining room table, and the kitchen chairs. We're sleeping on mattresses on the floor (much to Captain Adorable's delight!)

The empty POD was delivered on Friday and with the help of Captain Obvious' middle brother, and two migrant workers hired outside the local home despot (if you know what I am saying), that POD got filled up today. The mother's helper was here to keep Captain Adorable occupied and out from under the workers' feet.

This full POD will be picked up on Monday and a new empty one will be delivered. A friend (Mr. Resourceful, to be precise) will come in the afternoon to help load our stuff into that one.

And then, all that will be left will be the dregs.

We're thinking of going to Ocean City for the weekend to relax! (Next weekend, not this one anymore of course!)

Monday, October 5, 2009

Something Good

"Every time something good happens to me, you say its some kind of madness. Or I'm drunk. Or I ate too much candy." Fry to Leela in Futurama

So many things have been going right lately, I have at times feared some kind of madness...or, to put it another way, I've kinda been waiting for the other shoe to drop. Then again, the past two years have been so full of bad news, maybe I can confidently enjoy all this good news without fear. I am astoundingly lucky! I am married to a super-sweet man, I am mother to a darling boy, I am daughter of caring, supportive parents, and I am friend to caring, supportive people. We sold our townhouse in only 14 days for a reasonable price (a bit less than we wanted). We found a nice house in a neighborhood we really like for a pretty good deal. We've got a good place to stay for the 3 weeks in between selling this house and buying the new one. So far it looks like this deal is going to go down smoothly. (Knock on wood!)

Now the home inspection has revealed that the new house is in good shape, and it looks like it will cost less to heat the place than we thought! (Excellent insulation in the attic and a 3 year old high-efficiency HVAC system.) I found a good sunny spot in one of the mulched beds in the front yard to put my rosemary and sage. The carpets are in better shape than either of us remembered. There were people walking their dogs and mothers with their children walking in the street. The yard was not as tiny and awful as I remembered, either. The house is big but not gargantuan. I think, if we are very lucky/blessed/whatever word you like, that this might all work out.

And then maybe, maybe, maybe I will have lung surgery, get off chemo, and have another baby. Is that too much to hope for, surrounded by good news and good luck as I am? Maybe this is just some kind of madness.

Friday, October 2, 2009

A New House

The sellers accepted our offer! WoooHooo!! It is ok to party for a minute or two before we have to calm back down and remember that there are still several hoops to jump through. No real celebration till we sign the papers and it is legally ours. So, right now we are set to officially sell this house on October 15 and officially buy (and take possession of) the new house on November 6. You might notice that there is a 3 week period where we are homeless. Scary stuff!

Fortunately, we are going to be staying in our friends' house. It is so generous and sweet of them to take us in. I am excited about being close to the Metro for 3 weeks and I plan to take Captain Adorable to a few of our national museums in D.C..

I am sad to leave our house...and also really, really happy to leave our house! I am not sad at all to leave our neighborhood. Just last night I went to the grocery store to pick up milk and there were people yelling obscenities at each other in the parking lot! As Captain Obvious said, one does not have to look far to find a reason to leave this place.

Tuesday, September 29, 2009

An Offer

We wrote another offer this afternoon and our realtor told us she'd submit it about half an hour after she left our place. We gave the sellers till noon on Thursday to respond. If they say no then we will write an offer on the next place on the list. Did I mention we have a list of 3-4 houses? We're just going to go down the list till someone takes our money. Hopefully we'll have an accepted offer on a house in the neighborhood we like in time for the 45 day lock in for this mortgage rate.

Meanwhile, ou buyers want to come check up on us tomorrow. We contractually agreed to fix 5 things that their home inspector found, and of course they are fixed. But no, they can't take our word for it, they are actually coming to check on us. I suppose on one hand that's fine and so forth, but on the other hand, it is a giant inconvenience and a little insulting. And over kill, seeing as they have another, "final" walk through scheduled for before closing.

Ah well, I guess what it boils down to is we wan to sell this house and they want to buy it. So I will put up with this entitled high maintenance crap for 14 more days. AND THEN WE"RE OUT OF HERE AT LAST!

Saturday, September 26, 2009


Haven't looked at houses since...Wednesday? Or was that Tuesday? Not sure. Anyhow, today we packed. I worked in the kitchen and the Captains went after the rest of the house. We have boxes full of our belongings on every floor of the house now. Where do they go next?

We've decided to go back to the houses in the neighborhood we like. This neighborhood has good schools, low/no crime, and water rights. Captain Obvious has liked this neighborhood for about a year and a half now. In fact, he told some of our friends to look there about a year and a half ago when they were house hunting and they now live there! So, even though neither of us is thrilled about the houses currently on the market there, we really do not have time to wait for the perfect house to come on the market (if it even exists). We're hoping to go tomorrow to have a look at the 3 houses in our price range and put an offer on one. I've searched and searched and searched for the perfect house and have not found it (it might simply not be on the market anywhere, or perhaps we have to build it someday!) so I think it makes sense to buy a house that is not perfect in a neighborhood we really, really dig.

So, that's the plan. Let's hope it happens!

Thursday, September 24, 2009

No New House Yet

Well, Captain Obvious decided to veto the offer before it was submitted. He had some good points and although I found it disappointing and frustrating, I am glad that he vetoed a house he would have been uncomfortable living in! It is not at all productive for me to be disappointed or frustrated, so I've let go of those emotions and have moved on to a different plan. We had a talk abot what exactly we are each looking for in a house and then I complied those lists into a master list. I hope we can find a house we both love which meet the criteria.

Buying this new house is much harder than buying the one we (Lord willing and the creek don't rise) just sold. This time we have a child, and the house/neighborhood we buy will have a much bigger impact on his life than on ours. His needs, as we have discovered, are really at the top of the list. Finding a house that is within budget, with all our requirements and would-likes is going to be very hard. Figuring out where and how much we can compromise will also be difficult.

Today was the appraisal for this house. Tomorrow is a termite inspection. I have not started packing yet. Captain Obvious wants to drive to a new neighborhood to check it out this weekend. I think it is a waste of time to check the place out on the weekend and we should use that time to look at houses while we are checking out the neighborhood. Boo. We will figure it out.

Tuesday, September 22, 2009


Wow, I can't believe the intensity of the stress that emanates from the decision to sell our house and buy a new one. The selling of the house was intense enough! My goodness it is insane to think that we put our house on the market just over 3 weeks ago. I am surprised that so little time has passed. Having a house on the market is intense--especially because our house got a lot of traffic! We had 15 showing in 14 days or something?! Some of those days we were getting 2-4 showings. Captain Adorable not allowed to touch his toys or a make a mess, constantly packing up food and taking it somewhere or eating out (we did not do it too much, but a lot), and constantly wondering who was in my house looking around at the place where I brush my teeth and sleep and all those private things. My private space.

Anyhow, house hunting is also very stressful! Constantly packing food and taking it somewhere (less eating out these days because there is no bleeding time to stop and eat). Being gone for 4-5 hours a day (with my little guy), everyday. Looking looking looking for the Right One. Questioning houses, neighborhoods, school districts, taxes, community amenties over and over and over. And then doing it all again the next day.

We wrote an offer tonight. I hope we get it but if we don't, well, we're going back out on Friday. We've got to get this done by Tuesday next week at the latest to lock in the mortgage rate.

Saturday, September 19, 2009

House Hunting Blows Chunks

So, the buyers have done a home inspection and a termite inspection on our house. Guess what they found. If you said "nothing," or "not much," you'd be correct. The things they have asked us to repair (and that we are contractually obligated to fix) are small and, mostly, in my opinion, trivial. Because, of course, our house rocks. Anyhow the fixes they want are no big deal. Looks like the deal is indeed going forward. Settlement is still scheduled for October 15.

October 15?! FUCK! We need to buy a house, like, a week ago! We saw NINE houses yesterday and none of them was the one. They all needed work or we didn't like the floor plan or had needed new carpet and flower stencils on the new kitchen floor (vomit) so that would need to be replaced too. You get the idea. Sigh.

There is one house that Captain Obvious likes because it is cheap. It has tons of potential. It is in a water privileged community, in area where we want to live. It has a walk-out basement which is unfinished and once we finish that, it will double the size of the house, which is already bigger than our current house (oh, wait, this isn't really our house anymore, is it?). We don't need a huge amount of space, and we don't want to pay to heat/cool a big house, but it would be nice to stretch out a bit. The only problem is that we'd have to live in the grotty upstairs while we worked on the downstairs and then move downstairs while we worked on the upstairs. Not what I want to sign up for in the least. But, my darling husband is inspired. He does good work--very good work, and he gets the job done. When inspired, he does a super good job. But oh my oh my I really do not want to live in a house that we are working on. cousin, who is an architect, has agreed to come have a look at 2 houses (one is my favorite...but not perfect at all, and one is the house I discussed above) with us tomorrow and give his opinion. And we're having a look at a house that claims it is completely renovated and needs no work but has no water privileges. We will see...

A cute story:
This morning in bed (he's been sick, so our little Captain has been insisting on sleeping in "mama's bed" I told Captain Adorable that the doctor might be able to take out all my cancer. I went into more detail, but of course kept it simple and positive, but I did mention that I would have to stay in the hospital after the surgery. My idea is to discuss this now and then for the next few months so by the time the surgery rolls around, he will be fully informed and perfectly comfortable with the idea.

A little later I was on the phone trying to schedule a plumber's to come fix the things requested by the buyers and Captain Adorable was using his wooden tongs as a phone. I overheard him and he was saying, "yes, doctor, please take out cancer." Made me smile!

Wednesday, September 16, 2009

More and More Good News

After 15 showings in 14 days, we accepted one of the 2 offers on our house. The (prospective) buyers want to go to settlement on Oct. 15. We're suddenly in quite a hurry. We've got to find a house to move into SOON!

Fortunately we can stay with our friends in Takoma least last time I asked about it...until we can settle. But of course this means that we need to get on the ball and put in an offer on a house ASAP. Like maybe on Monday. Tomorrow (Thursday) the buyers' inspectors are arriving here to inspect and to appraise it...I think...anyhow, of course Captain Adorable and I cannot be here (our realtor will be, though!), and of course my car is not completely fixed yet...who knows if it will have enough juice to get to music class and home, then to somewhere to hang out until the inspection is over, and then home again...

Today I went to NCI to meet with the surgeon. :) He said a lot of things that I really liked and some things I did not like. He said that probably, because of my previous lung surgery, my lung is probably stuck to my chest wall. He said they will try to do the surgery with VATS but may have to convert (change) if they cannot easily dissect the lung from the chest wall. If I have VATS (Video Assisted Thorascopic Surgery) ), they make 2-3 small incisions where they can insert the scopes. The recovery time in the hospital is 1-2 days. If they have to convert to a thoracotomy, the recovery in the hospital would be 3-5 days. A thoracotomay is the same surgery I had in Sept. 2007, but this time the incision would be smaller and they'd surgicall break a rib (and actually remove about an inch of it!) to get inside the chest cavity instead of moving the ribs, which is quite painful for the patient. I'd have an epidural for pain, just like last time.All the treatment would take place at NCI. Which I am happy about! It certainly can't be worse than the hellish stay at JHH after my surgery in 2007.

As I have stated before in this blog, treatment at NCI is free. WOW, a government funded, government run health care system that, in my opinion, has saved my life. And I have good health insurance. Yes, I am in favor of public health care. I think everyone deserves the right to see a doctor and a dentist. Goes hand-in-hand with the pursuit of happiness, in my interpretation of our Constitution. But this blog is not about larger issues, just about my journey which includes navigating our health care system from the perspective of a well educated person with excellent family support and wonderful health insurance. I am someone who is perfectly capable of advocating for myself and if I am not, my husband and other relatives (FIL, sweet MIL, for instance) would certainly be happy to help out in any way they can. I am one of the lucky ones.

The surgeon also said that one of the reasons to do this surgery is to get me off of chemotherapy! He said he thought I might need to do adjuvant chemo (Definition: (AD-joo-vant) Treatment given after the primary treatment to increase the chances of a cure) for a couple of months, but then we'd be done! (The oncologists' opinion may vary from this, but I am not sure at the time I am writing this.) Of course, there is the possiblity that cancer could pop up somewhere else in my body at some later point, but it might not and (as the surgeon said,) "I prefer to be hopeful."

I have been allowing myself to hope a lot this afternoon. My wish to have another baby may yet come true...

Sunday, September 13, 2009

Not So Fast After All

My darling little one is not growing up so fast after all. He still needs me to help him get to sleep at night, and he still ends up in our bed most nights. :D In fact I am glad he is not quite gone yet. I miss him and I worry about him all by himself in his own bed. Sometimes I even go into his room in the middle of the night to make sure he is not too cold and to cover him up if he feels cold to me. Captain Obvious has also admitted that he's been missing our little one, and lately (because chemo has made me more tired), he's been the parent going to get our son in the middle of the night, so we are still one happy co-sleeping family. :) Sometimes I have to put Captain Adorable on the crib mattress on the floor because I can't handle the little feet in my back anymore, but most nights he is only in our bed for the last few hours before morning anyhow.

At the same time, his potty usage is just getting better. Peeing in the potty every time is so much the norm that I do not even reward for it any longer. He initiates on his own, but I do remind him at times like when we leave the house or when we come home from being away. (In fact, he is not shy about whipping it out where ever he happens to be, as long as he's outside--something I am going to have to teach him not to do...) He's very interested in no longer wearing a diaper to bed, so I told him that if he could keep his diaper dry for 3 nights in a row we could switch to cloth diapers and then to undies. The very next morning his diaper was dry and he did his morning pee in the toilet. :) I've been putting him in a cloth diaper for naps and so far it has been dry for 3 naps in a row!

He is also doing all his poops in the potty, which I am still rewarding him for. (He gets to watch 3 episodes of Little Bear for every poop in the potty, which is about 24-25 minutes total.) I was quite, quite impressed on Saturday because he remembered to ask me for the potty seat so he could poop in the toilet while we were out!

Here's the story. My parent, Captain Adorable, and I went to the Baltimore Zoo. It was rather empty for a Saturday because it was a rather cool day with some rain/sprinkles in the air. After about an hour and a half of walking and enjoying various animal exhibits, we stopped to eat lunch at the picnic area. Captain Adorable was of course too excited to eat and soon hopped down from his seat to have a closer look at the squirrels (I think!). He seemed a little contemplative and then said, "Mama, I pooping!" I said, "Oh no you're not!" as I swooped in to scoop him up. He ran from me a little (maybe because I ran at him so fast?) but I snagged him and checked his undies, which I was surprised to see, were still clean!!! It finally clicked for me that he was asking for the potty seat (as I have told him and told him to do). I slapped him on my back (did not want him to walk to the bathroom because walking does help poop to come out), grabbed the diaper bag, and ran, panting, to the bathroom. Once installed on the potty seat on the toilet, he happily did the deed right there in the proper spot! I was beyond excited and proud, but tried to be calm. I felt that it was some kind of pivotal moment. I hope this success means I will never have to throw out another pair of undies again. (Fingers crossed!)

Friday, September 11, 2009

Perhaps More Surgery

Now that I've achieved stabilization (my cancer is not growing), I am eager to get more aggressive. In the past, the tumor board at NCI said that they thought I'd be a good candidate for surgery (VATS, not giant incision surgery like last time). But the JHH tumor board said no. So, here I am after 3 months off chemo (though I am back on now, as you know), with no new nodules in a year and no growth for 6 months. Let's cut the shit out. I asked my JHH oncologist about surgery or ablation but because the JHH tumor board said no, her only option was to ask about ablation. Unfortunately, the radiologist who performed my last one (that went so well and is officially being called dead) has been away and has not responded to her questions.

However, I went to NCI last week on Tuesday and the oncologists got all excited. They promised to discuss me at the tumor board and now, much to my extreme excitement, I have an appointment with a surgeon next week on Wednesday!!! I also have a PFT (Pulmonary Function Test) scheduled for Friday! NCI has asked for the original CT scan--the pre-surgery CT scan. I was stressed because I thought it would be a big struggle to get that scan out of JHH but Captain Obvious remembered that a couple of months ago we got a big package in the mail, which contained my CT films (no one thought I had cancer then, so the CT was not the super-excellent quality that the ones I get now are). He found the films, still upstairs, despite our recent house-clearing to get the house ready for the market. Fabulous! I am taking them to NCI next week.

So, surgery...scary stuff...lots of questions for the surgeon. Goodness knows I do not want to have surgery and come home to a house full of half-unpacked boxes...or to an extended stay hotel...I want to come home to home, with my mommy in a nice guest room to take care of me and Captain Adorable for a few days till I get back on my feet.

And here we are, right in the middle of selling our house to a group of buyers who all have to settle by Nov. 30. Scary, scary stuff. Good scary, but still concerning. I am sure we will figure something out--there are lots of options. Just a bit daunting right now.

Houses, Houses, Houses

So, yeah, our house is on the market. We've had 14 showings in 11 days. Things are moving fast! We're also looking at houses. There is a nice selection on the market, but as usual, if only we had more money, then we could get the house we really, really want... ;) I guess it is always like that, no matter how much you have to spend. The constant showings are great, but living a life without being able to be in my house whenever it is convenient for me is seriously annoying. And looking for a house that meets the location requirements, bedroom requirements, bathroom requirements, amenities requirements, and gut feelings of two decisive people with quite different opinions (Captain Obvious and I) is not easy.

We've received one offer so far and I think we're going to get at least one and maybe two more. (I told Capt. Obvious this would happen!) I hope I haven't jinxed it by writing it here, of course. ;) We're going to review all offers on Monday evening and then make a decision regarding what to do next (accept, counter offer, reject).

They're all going to want to settle before Nov. 30. That's because that's the deadline for the first-time home buyer's tax credit. First time home buyers have to go to settlement before Dec. 1 in order to assure themselves an $8500 from the State of Maryland. That's why we're getting so much traffic and that's why we'll get multiple offers in a market where houses are sitting for months...that and the price (which I think is too low, but hey as long as we can get out of here and into the next house, I'm fine with it!).

We're talking about what to do next now--apartment? Living with friends in Takoma Park for a while? I want the transition period to be as short as possible because I want it to be as easy as possible for Captain Adorable. I also have some health issues (which I am going to do a separate post about) which lead me to desire a house to come home to...


Saturday, September 5, 2009

Growing Up

Since the accident at the train museum three days ago, Captain Adorable has done every subsequent poop in the potty! I'm not reporting on pee anymore because he consistently does every pee in the potty (except when asleep). In fact, he's been pooping in the potty by himself and then calling me to view the fait accompli. If I happen to be around when he needs to go, he sends me out of the room and gets the job done on his own. I am sooooo happy and proud!

He's been sleeping in his own bed every night (he does wake up a lot earlier than when he slept with us, but most mornings he gets in bed with us and goes back to sleep for a while). For the past few nights, he has even been falling asleep by himself! After his bath, I read him two books (which he chooses, of course), then lie down with him and sing to him. After I think he is relaxed enough (half an hour or less), I get up, tell him where I am going, and ask him to stay in bed and go to sleep. So far he's done this 2 nights in a row. I am perfectly willing to stay with him if he needs more time, but I am also interested in him being able to fall asleep on his own.

Suddenly I am the mother of a guy who is toilet trained and falls asleep by himself in his own bed, where he sleeps all night! Am I ready for this??? Buying him that bed and giving him his own room was a huge change, and one he was obviously ready for, seeing as his reaction has been so positive. He loves his bed, loves his room, and talks about them all the time. The first thing he does when people come over is take them up to his room to show it off!

I miss cuddling my little one to sleep and nursing my little baby, but I am also proud of his independence and confidence. Our big king-sized bed feels like a big bed again. And, if Captain Adorable needs less from me, then I have more to give to myself, and well, I am a cancer patient on chemo, so being able to give more to myself is also welcome.

WOW our house was booked for two showings today, so we're just back after being gone for almost 2 hours. I can't see any evidence that anyone was here at all! Last time there was a showing I noticed little things (like the door to the garage was open when it had been closed before, etc). Either these people had super concientious agents, or they didn't show up!

Wednesday, September 2, 2009

Accident While Out

So, today was a pretty good day. No, not my fantasy birthday, but a nice day. The train museum was fun, someone came to see the house while I was out, and I got everything I wanted to get accomplished at JHH done.

Speaking of the train museum, I was very, very disappointed to discover that Captain Adorable had pooped in his undies after lunch. I had to throw out the undies he was wearing (a cute pair of boxer briefs with trains on them from Gymboree). Of course I had a spare pair of undies and shorts in the diaper bag, and I reminded my little Captain that I also carry a potty seat for him everywhere we go and if he needs to poop, he just has to let me know and I can take him to the bathroom and set him up with a good place to poop. Later, at JHH, we went into the bathroom for him to pee and he asked for the potty seat. I knew he didn't have to poop, but I wanted to show him that if he asked I would deliver, so I hustled and got him on the potty seat. All he did was a pee, but I was quite happy that he gave me the chance to make good on my promise. I just hope next time he remembers before he poops his pants.

Captain Obvious is in California right now. I miss him, and being a single parent gets a little tiring, especially because this chemo does make me tired and today I did not get to have a nap. I was relieved when I finally got Captain Adorable to sleep this evening; I quietly got out of his bed, went downstairs, and served myself a bit of ice cream. I turned around to get my phone and there he was! Agh! But he was super cute. "Mama, I can't sleep wifout you." I took him upstairs and put him in my bed. I told him to put himself to sleep by thinking about Little Bear and Mother Bear and all of Little Bear's friends. As I left, I heard him talking and went back in the room to ask him what he was saying. He told me to leave, that he was just talking about Father Bear to himself. :)

My Birthday

Today is my thirty-sixth birthday. :) This morning we are going to the train museum with Ms. Breadwinner's husband and sons. Should be fun! This afternoon I have to go to Johns Hopkins to sign authorization forms and get my most recent CT scans on CD to take to NCI. Really looking forward to it. NOT.

Anyhow, yesterday was day 7 of no more diapers. It went well. I do have a funny story for you, though. As usual, we were in the kitchen while I was making breakfast. Captain Adorable was standing on his step-stool at the counter and all of a sudden he told me there was "throw up on my butt." I was confused and thought he was just saying something silly. Then I smelled a stinky fart and asked him if he wanted to go sit on the potty. Sure enough, when he pulled down his pants, there was a little bit of diarrhea on his butt! He sat down and did the rest of his poo (ttal liquid, poor guy) in his potty, and then I cleaned him up. So the "throw up" on his butt was a little bit of poo that sneaked out when he farted! As we say in this house, he gambled and lost. I still rewarded him with 3 episodes of Little Bear, because, after all, he did his best and he got most of his poop in the potty (pretty impressive for diarrhea).

Monday, August 31, 2009

Potty Training Day 6

I am pleased to report more success today. Captain Adorable had zero accidents today. He went to the potty to poop by himself this morning! And of course throughout the day (several hours spent at Cheerful's house and outside at a playground) he initiated peeing several times and cooperated willingly whenever I suggested that perhaps he needed to do a pee. He has no compunction about going outside (which is good for right now but might be bad...), and has gotten better about holding it so that no urine gets on his clothes. He even washes his hands after he goes!

We've been watching a lot of Little Bear. Starting on Wednesday I am no longer going to track the pees done outside the house, so his reward tv will decrease.

Captain Adorable was angry to find himself in his own room when he woke up from his nap. You see, he fell asleep in the car on the way home from Cheerful's place, so I carried him to his room for the rest of the nap. This upset him very much and he cried with anger about it and was not himself for the rest of the day. However, despite being upset, he went to sleep in his own room tonight. We will see if he stays there till daylight.

Got a chance to catch up with an old friend today. I heard from him about his impending divorce and thought a lot about other friends of mine/ours who have been through that. I am oh so lucky to be married to my darling Captain Obvious. I think we are lucky to have each other.

Sunday, August 30, 2009

Potty Training Day 5

Captain Adorable did every pee (several by himself) in the potty and did his poop in the potty as well. I am confident enough that I've put away all the diapers (pull-ups) and am contemplating giving them away. Although I am overjoyed that Captain Adorable is using the potty consistently and happily wearing his super-cute undies, but a part of me thinks is rather a shame to give away the diapers, seeing as I paid about $40 for them! Seeing as he is only wearing diapers at night, the changing table seemed a bit superfluous and, well, as long as we're cleaning things went to the storage unit also.

Capt. Adorable slept all night in his bed in his room and took his nap there too (he kicked me out of the room before he went to sleep again). I missed him a lot last night and wondered whether he was warm enough...I woke up this morning to the sound of him moaning. I sat up in bed but could not see him. I decided to lie back down because it was 6:30 and I was tired and I wanted to see how it would play out. I soon heard a little crackling noise and decided to investigate. There was a plastic trash bag full of blankets and pillows partially blocking the door to the room next to his and the crackling noise was a result of Capt. Adorable climbing over it to get various stuffed animals which were on the floor in there. :)

We worked hard again all day (mostly Capt. Obvious) on getting the house into shape to sell. It is going on the market tomorrow. I am not terribly happy about the price we've decided on since I think it is rather low, but then again if it means the house sells and sells fast, I will be happy. I think the place looks great and it sure feels good to get rid of bags of trash and take lots of stuff to charity. I have a bunch of maternity clothes to give away, but no one seems interested, so I guess I will take those over to the local charity shop tomorrow or the next day.

We had Ms. Breadwinner and her family over for dinner tonight. At one point her elder son and Capt. Adorable were upstairs jumping off the new bed and they were landing so hard that I was afraid they'd come through the ceiling! (I was downstairs in the kitchen, making cornbread and peach cobbler at the time.)

Saturday, August 29, 2009

Late Breaking Development

Well, as part of staging the house (making it look like normal people live here), we moved he queen-sized bed out of the room we've been using as a guest room and bought a new twin-sized bed to put in there. We told Captain Adorable it is his bed, because we also took apart his toddler bed, which has been in our bedroom (up against the foot of our bed) and we wanted to give him something cool to replace that. (We wanted to put in a twin-sized bed so that when my mom comes to visit, she will still have a comfortable, adult-sized bed to sleep in.) He was rather upset about the idea of his little bed being gone, poor guy. So, now we have all sorts of choices for our little Captain. He can sleep on his crib mattress n the floor in our room. He can sleep in our bed. Or, he can sleep in the new twin sized bed. He knows these choices are available.

Much to my surprise, tonight he demanded that he sleep in the new twin bed. When I reminded him that Amma would sleep in this room when she comes to visit, he said, "No. Amma sleep in Mama's room." I thought that was hilarious. I read him the nightly two books of his choice, and then he kicked me out! "Mama leave. Go 'way." I asked, incredulous, you want me to leave?" He replied, "Yes, Mama get out." And pushed me! And then added, "I call you." I said, oh you'll call me if you need me?" He answered, "yes." I left the room and sat at the top of the stairs where he could not see me. In about 10 minutes I went in to check and sure enough, he was fast asleep!

If I know my boy, he'll come to our bed at some point during the night...if not I will miss waking up to the sight of his sweet smiling face.

Day 4 of Potty Training

Well, Captain Adorable had one pee accident today, but it was late afternoon/early evening and he did not have a nap today, so I am going to chalk it up to him being very tired. Once again, all other pees were in the potty, even though we spent about 3 or 4 hours at IKEA. He also did a big ol'poop right in the potty! We're watching Little Bear right now to celebrate.

One other cool thing--there was free face painting at IKEA today, so Capt. Adorable got himself a cute little blue cat face painted on his face. Totally cute!

Captain Obvious has been working extremely hard on getting the house in order to sell. He wants to put it on the market on MONDAY! I think it is going to be ready, though, so let the fun begin.

Chemo is making me tired, but that's about it. Tired I can handle, so far. I am amazed how easy this is so far.

Day 3 of Potty Training

Yesterday was day 3 of no more pussy-footing around with the potty training. He did every single pee in the potty, and we spent several hours away from home. However, the first chance he got to be alone he used to poop in his undies. I think he just honestly prefers to poop standing up. Sigh. Maybe we will have to try those poop cars Ms. Breadwinner wrote in to suggest. Let's see how today goes.

So far today he's done all pees in the potty, including one he did by himself, with no prompting from either parent. I still have hope for the poop.

Thursday, August 27, 2009

Seems To Be Working! Poop!

OK, so today was day 2 of no more pussy-footing around with the potty training and things are going very, very well. Again we had no pee accidents and today we actually got a poop in the potty as well! We even left the house today--we went to music class and the library. :)

Music Class: Captain Adorable loves music class, (Music Together) but the last one was over a few weeks ago, so he was not terribly motivated to go to this one. Once we got there, however, we had a wonderful time! Capt. Adorable ran around and danced and clapped and just had a great time. Afterward the teacher came up and said, "this is a very physical person, isn't he?" I agreed and she said that he really could not be more engaged in class. (Something the other teacher we really liked said also!) I agreed and then she complimented me by saying that I channeled his energy very well. I am so glad we are doing music class again. He's been singing songs (and not just ones he makes up, though he sings a lot of those too) for a couple of months now, and this just keeps his interest high. Tonight when I was putting him to bed, he sang me Amazing Grace (yes, I sing it to him a lot at bedtime--a beautiful song). All the words. So beautiful to hear it sung in his sweet voice!

Then, at the library, Capt. Adorable was trying to get away from me in the sci-fi section. I kept up with him, and he motioned me away, saying, "Mama leave me alone. Trying to do a poop." I was like, oh no you don't! You cannot poop in your undies! Let's go to the bathroom. Let me put a diaper on you right now (then discovered that I'd left the diaper bag in the car...). But he was not interested in going to the toilet and I was eager to get home and get him on the potty, so I picked him up, checked out our books and boogied to the car. When we got home he was very cooperative, and I read him books while he sat on the potty till his little butt got sore, but there was no poop. It wasn't till after his nap, after Captain Obvious got home, that he pooped on the potty and then it was a total surprise to me. I was looking for the folding potty seat that I used to carry everywhere (and will start again) and when I found it, I put it on the toilet to show it to him, then put him on it, and bang! he pooped with a big smile on his face.

As far as chemo goes, I am doing very, very well. I am feeling like keeping it a bit on the low-key side. We've stayed home or very close to home for 3 of the last 4 days. It is supposed to be cool and rainy tomorrow. I think we might have some more puddle-jumping in our future!

Wednesday, August 26, 2009

Tired and Potty Training

So, here we are on the third day of chemo and so far I am very happy and pleased. The chemo is affecting me--I am a bit tired. Also, the wonderful anti-nausea patch I was wearing gave me a GIGANTIC headache this afternoon. However, these side effects are an absolute breeze compared to what chemo has been in the past. If I need to hire/ask for hel, I will do so, but for right now I am ok with being on my own.

I have found a Montessori school I am interested in for Captain Adorable, so we will see if perhaps we can get him enrolled there if this gets harder.

I have also decided that I am done with this pussy-footing around as far as potty training goes. I know that he is perfectly capable of going in the potty every time, so I have decided to resort to bribery. He loves watching Little Bear. Each episode is about 7-8 minutes long. I have told him that he may watch one episode for each pee in the potty and three episodes for each poop in the potty. He's not peed in his pants at all today! In fact, he went to the potty by himself twice! However, he has not pooped yet. He didn't poop yesterday either...I'm getting a bit worried about it... It has been really nice to be able to praise him so much today!

I also put into action a plan I hatched a while ago. This afternoon we sat down with a pair of plain white undies and some fabric markers. Together we (but mostly him) drew on/colored on the undies. He will wear them tomorrow. They are really cute, in my opinion. Capt. Obvious got to color on them a bit as well! I am looking forward to him wearing them tomorrow.

Capt. Adorable has been asking when his Oma is coming to visit him, so we're looking forward to having her here in a couple of weeks.

Monday, August 24, 2009

Started Chemo Today

Well, I started chemo today. So far it is great! All I did was take ONE PILL (instead of the previous requirement of 4) after breakfast. I am also wearing a patch which is the new anti-nausea medicine (been wearing that for 2 days already, to prepare for chemo start today).

Then Captain Adorable and I went to meet NonFiction and her daughters and Ms. Resourceful and her children at a playground. It was a nice morning (we didn't leave till 1:00 or was it 1:30?!). The weather was cool today (well, only got up to 85) so it was wonderful.

Before we went to the playground, we had to stop at the library because I simply had to pick up the next book in a series NonFiction recommended to me. I could barely put down the first one. I was standing in line to check out the book, holding Capt. Adorable to keep him from running off to the children's section and he began to pick his nose. Now, he's been doing this a lot lately (maybe because he was sick recently and he's finally figured out that there are boogers in there?) and I've been telling him that while he shouldn't really pick his nose at all, it is acceptable to do so when no one can see you. So, I asked him not to pipck since we were in the library. He replied that no one was looking at him. I said, "Well, I can see you." His response was to firmly but gently reach up and push my face to the side (so that I could no longer see him) and went back to picking his nose! I manged not to laugh until I got to the playground and got to tell the story to my friends. :)

Recently Capt. Adorable has been driving me crazy with tons of questions, mostly the question "Why?" I do my best to answer intelligently and patiently, and sometimes my temper does get the better of me, but after answerring the same question 2-3 times I will ask him if he remembers what I just told him instead of repeating myself yet again. So, this morning at 7:00 he woke me up and said, "Mama, wake up." I (sleepily) asked, "Why?" He said, "Its daytime. Mama, wake up." I again asked, "Why?" To my immense amusement, he answered, "I told you!" You get back what you give, don't you?!

Thursday, August 20, 2009

Best News In Two Years

I went to JHH yesterday for another talk with the onc(ologist) and to have an MRI of my brain.

The news I got from the onc is this: as it turns out, when she told me that the CT last week showed that the cancer had grown again, she was giving me the only information she had, which was simply some preliminary numbers. Yesterday she had the full, final report. The report said that the cancer is "stable to minimal growth," which, due to the limitations of the technology, means that the cancer is stable. Yes, indeed, it looks like Xeloda (5FU) works against my cancer! There was no growth in the current lesions (2 in the lower portion of my right lung and one in the upper portion), and no new lesions. The MRI did not show any cancer either.

This is the best and most hopeful news I've had since being diagnosed.

I am going to start 4 rounds of Xeloda on Monday, but I have high hopes for a much easier than normal experience, especially because the onc has come up with some new ideas to help with nausea as well. This fall might not be so bad!

In light of all the above, we've decided to put our house on the market. :)

Wednesday, August 12, 2009

Growing Again And New Plan

Long day hopped up on steroids and intravenous iodine. Blah.

New oncologist fellow seems pretty cool. :) She's even a bit more touchy-feely than the last one, whom I liked a lot, so that is good.

The scan results show that the cancer has grown again, a little, so I need to get back on chemo to stabilize it. The good news is there are no new lesions.

The new plan is to try a different chemo regimen which will hopefully be easier for me to take (and much less nausea). This new chemo plan would be only one drug (Xeloda), which is taken in pill form, and to take a much lower dose (1000 mg instead of the 2000 mg I was taking). I will do 4 rounds of that, then have another CT scan to see what's going on. If there is more growth then we will change the chemo regimen. If there is no growth, we will continue with that until it stops working.

I have an MRI scheduled for next Wednesday. Its been about 2 years since the last one I had and I've been having dizzy spells (which could be due to dehydration--drinking enough is definitely a problem which I've been working on). It is also a good idea to get a new baseline since we are starting a new approach to treatment.

I have high hopes for this new regimen. I look forward to not having to go to the chemo ward every 3 weeks, to not being knocked out and sick from that for the next 3-4 days. I look forward to having more energy and less nausea. I hope that this will be a regimen I can live with, not suffer under.

Tuesday, August 11, 2009

CT Scan Tomorrow

I will post results (and plan going forward) when I am ready.

I've had a wonderful, wonderful summer with my son, my family, and my friends. This wonderful summer makes me more accepting of chemo because I've seen what it can buy me. And speaking as a healthy, happy person, I am willing to go back to the poison for a bit to gain 2 months like those I've just had.

In other news, I just discovered one more thing about cancer that sucks. Now that my son's understanding is greater, his worry is greater as well. Tonight it took an hour to put him to sleep because I talked to him about tomorrow (will not talk about cancer/doctors at bedtime or close to bedtime ever again if I can avoid it, with the caveat that if he asks, I always answer him honestly). He was very sweet and told me that the "cancer not growing" and that he would have a duck scan and Daddy would have a hen scan. Later on in our conversation he amended that to say that I should not have a CT scan but a duck scan also. I did get wet eyes but did not cry in front of him.

He thought he was going to see his Oma (Ama, as he pronounces it) tomorrow, which he was happy about, so was surprised when I told him he was going to see Grandma (my sweet MIL) instead.

I wanted to give him a happy childhood and now I realise that my cancer will affect his childhood more deeply than I can control. I am so sorry my darling boy, light of my life, apple of my eye. I am so sorry.

Fun Indoors and Out

This morning Capt. Adorable and I went to the mall for some fun. We were sad that our friends could not join us, but had a lovely time riding the carousel, playing in the indoor play area, riding in elevators, looking at stuff in stores, and generally walking/running/riding around in the air conditioning. We had lunch at Panera, where my little Captain engaged in some flirting with a lady at the next table (which was really sweet). Capt. Adorable demanded his favorite ice cream (Cotton Candy from Maggie Moo's, which is bright turquoise blue) with rainbow sprinkles in lieu of going to Cheerful's house (where we had been invited). He ate only the top layer, the part with the sprinkles. I called Cheerful's mom to let her know we would not be coming over. Capt. Adorable fell asleep in the car about 7 minutes into our drive home.

Once he woke up from his nap, he talked of nothing but Cheerful and going to Cheerful's house. I decided to call again and ask if we could come over for the afternoon. Happily they had no plans for the afternoon and we could join them at a brand new local playground. We had a great time. The boys played together and separately on the playground and the two mamas sat on a bench and talked. The type of conversation you only have with people once you like them enough to be a bit vulnerable without fear of anything bad happening. If you are lucky (and I was) the slight vulnerability leads to deeper understanding and agreement--and the friendship becomes even more valuable to both of you.

Despite the heat (it was 92 or 93 out!) it was a lovely afternoon.

Monday, August 10, 2009

More Adventures

I had a lovely weekend with the Captains. We had thought about going to Ocean City for the weekend, then perhaps about going camping, but when it came down to it, I preferred to just stay home (and not miss our last music class). We had a good, relaxing weekend. On Sunday, after music class, we all went to Pretty Boy Dam on the Gunpowder River. We had a lovely time hiking in, navigating tree roots and rocks and fallen trees. I admired my son's agility and sure-footedness (which must be due to wearing soft-soled shoes, of course, haha). I was shocked by how cold the water was; we crossed the river to get to a nice rock in the sun where we could all sit and have our snack, and walking through it was incredibly painful. Of course, I should have known the Captains, especially Captain Adorable would end up in the water, no matter how freaking freezing it was! I did bring a change of clothes, but not a bathing suit. The thrill of jumping off the rock into the water (about knee deep on me) was irresistible to my little one and of course he ended up entirely soaked.

That evening I made 2 cobblers: a peach and a raspberry and peach for dessert. The Captains yummed them up. Captain Obvious asked that I make another one for him to take to work, but when I tried to make it tonight I discovered that I did not have enough sugar. Perhaps later this week I can do it. I froze about a dozen peaches this evening. Hopefully they will go into delicious smoothies in the months to come.

Today we went to IKEA to hang out with my friend Non-Fiction and her daughters, have lunch, and buy a couple things. Tomorrow we are going to the mall to meet Cheerful, ride the carousel, and return some gigantic granny panties I bought by mistake (scary stuff!).

Wednesday is the CT scan. I have to start the prednisone (steriods) tomorrow at noon. Of course the fellow I've been assigned, as I've mentioned before, has made no attempt to contact me. Tomorrow will be the first time I meet him. I was rather irritated to discover that I do not have enough prednisone in the house, nor do I have a refill (as Capt. Obvious discovered). So, I had to call and have the JHH medical oncologist on call paged and ask for a prescription to be called in so I can go pick it up tomorrow and do the medication. I am not surprised that once again (albeit in a small way) the person who is supposed to be taking care of me has failed me. If he'd taken 10-15 minutes to call me when I was assigned to him months ago, if he'd reviewed my chart, if he'd cared enough about his job to take an interest in his patient...perhaps I am blowing this out of proportion, but it is another reminder that my best advocates are me and my Captain Obvious. Perhaps my only advocates. We've got to remain vigilant. And hey, who knows...maybe we won't like this fellow and maybe we will decide to seek treatment else where. Maybe not. Sigh. I imagine it is all the same, no matter where you go (except perhaps at NIH).

Wednesday, August 5, 2009

Out and About

Today we went to music class, then went to an organic grocery store we don't usually get to, then ate lunch at a picnic table outside, then bought some wooden play fruit at another natural store nearby. Then we went to the mall and rode the carousel, looked at the animals on display in the pet store windows, played in the play area (and golly dern my son likes to jump off of stuff!), had a look at boy clothes, ate some ice cream, and rode the carousel once more before heading to the car. I buckled Captain Adorable in his seat, then got into my seat and started the engine. I glanced back at him and he was asleep!

We stopped at home for about a minute--to grab the keys of Ms. Resourceful's place (I left the car windows open and ran up and down my front steps to retrieve the keys from right inside the door, and I only left him in the car because he was asleep.) Once at her place, I carried him inside with me and let him sleep on her couch while I watered and watered and watered her parched plants. When I picked him up to carry him back to the car to go home, he woke up, so he only slept for about 40 minutes. I hope this late nap will not affect his ability to go to sleep at bedtime.

He scarfed down dinner, so at least I know the ice cream did not ruin his appetite. :)