Dancing and Talking

I think I have neglected to post that Captain Adorable dances now! :) He seems to respond to almost all music, but there are certain artists that get a quicker response (so far he really responds to Ozomatli and the Gipsy Kings). He puts his legs wider than hip width apart and starts bending his knees, doing an exaggerated up and down movement. He's recently added some arms movements. His dancing is so, well, adorable!

He also has a lot to say. Yes, most of what he says is toddler language, but more and more words are English. We were at my sweet MIL's house for SIL's high school graduation party (she was valedictorian--how awesome is that?!) and MIL remarked on how Captain Adorable was talking a lot. And you know, she was right! He says TONS of stuff now:
- mama
- dadee (or just dee)
- waa (for water)
- faa (for flower)
- faa (for fan)
- dog
- dik (or something like that: means stick)
- toes
- cat (sounds like gaa)
- whoa (when surprised or intrigued)
- book
- bird
- buhh (means bus or truck)
- bubbles
- faa plus pointing equals shower
- hot
- shoe
- bye bye
- toot toot (he says this when he is on his rocking train)

There are more but I can't think of them all now! (I have been adding more as I think of them.) He also understands more and more each day. You can ask him to bring you things now and more than likely, he will bring what you have requested. :) He can identify various body parts on mama, dadee, and himself (though he seems not to have a nose, hehe).

We tried going pee pee on the potty (toilet with me holding his back) this afternoon but nothing happened. Ah well, it is early days yet.

Getting Ready Again

Well the results of the blood test taken last week indicate that there was/is no infection. The elevated blood cell count was a result of the steroids. Blah. Now I have to gear up again for this procedure. Get to again take the steroids in preparation. Yay. The ablation is on (May 29) Thursday, so I start the steroids on Wednesday.

In other news, I want to start some early potty learning with Captain Adorable and have already managed to get him to poop in the toilet once! As soon as the library is open on Tuesday (and after I go have more blood drawn for the pre-ablation tests), I am going to get myself a library card and check out the book Diaper-Free Before 3 by Jill M. Lecovic. I have talked to several moms who did EC (Elimination Communication) and early potty learning and I am ready to go for it. I have a friend whom I will call Ms. Resourceful, and her daughter is 2 months younger than Captain Adorable. I was quite impressed by that little one's ability to indicate a need to use the potty and if she can do it, surely Captain Adorable can! I also have a friend (Mrs. Breadwinner) whose child has not even started potty learning and he will be 3 in August! I hope that with some effort on my part, we can get rid of diapers before Captain Adorable (17 months on June 6) is 24 months.

I will start that process after the ablation. I want to read the book completely first.

Odds and Ends

As I was walking through the hospital after the ablation attempt with my MIL and Captain Obvious, somehow the topic of being lucky came up. As I said then, I am actually quite lucky in a lot of ways. I just happen to also be really unlucky in one key area...

I am so lucky to
- have my amazing, sweet Captain Adorable
- be able to stay home with my child
- be married to my darling Captain Obvious
- have supportive parents and parents-in-law
- have access to the wealth of information and resources online
- have excellent health insurance
- be in (mostly) good health
- have a good, reliable car
- live close to a world-class cancer treatment facility
- have been given access to higher education
- have a sewing machine
- live in a house that I own with my husband (we took it off the market, too much cancer stuff going on)
- be confident and assertive enough to protect myself and advocate for myself
- keep company with two sweet and gentle cats
- get to go out to eat Indian food fairly often :)
- get to nap with my son daily

There are so many more things I could list! I am soooooo lucky, aren't I?

There is really only one thing on my unlucky list (cancer).

Overheard in the Waiting Room
While waiting for me to emerge from Phlebotomy, (I have blood drawn pretty much every time I go to the hospital, whether I am there for treatment or just an appointment) Captain Obvious overheard the following two stories.

A man who had health insurance but it had run out because the insurance had a $40,000 cap and the hospital wanted a retainer of $60,000 to continue treatment. Can you imagine? Sheesh! Think about it this way here are some approximate costs for my treatment. The cisplatin and gemcitabine combination cost about $5-6 thousand. Just gemcitabine cost about $4 thousand. Each PET scan is about $5 thousand and each CT scan is about $1400. My lung surgery was about $15 or $20 thousand, plus we have not tracked how much all the prescriptions cost (some of the anti-nausea meds I took were $100 per pill). $60,000 would not last very long!

A young woman (obviously a breast cancer patient) emerged from her doctor's appointment to tell the man who had accompanied her (perhaps a boyfriend? you'd think a spouse would have gone into the doctor's office with her) that she was going to have to quit her job. The treatment recommended for her was radiation and it would have to be administered almost every day. I don't know how she could quit her job (what about health insurance? COBRA, maybe? but that's expensive...) and still be able to live, much less undergo cancer treatment...

Anyhow, like I said above, I have good health insurance and that is a really, really big deal. I am very lucky to have the coverage because I do not know how we would handle this, financially, otherwise.

The New Bed
We got a natural latex bed. It feels very different than regular mattresses, and I love it. My Mom said it felt too soft for her. I disagree--in my opinion it is not soft, it is springy (she said it was springy, too). I find that my body comes to an easy, cushioned rest. On a hard bed I find my body feels like it does not belong, whereas in this bed I am level and even. I can turn over and move around without effort (many people complain it is hard to move around on memory foam mattresses). Motion does not transfer, so I do not feel Captain Obvious' movements and I think this leads to deeper sleep for me! Captain Adorable seems to like it just fine. We just got a platform bed with a beautiful headboard yesterday, so we are up off the floor again and I am very pleased. Captain Obvious made me very angry because he insisted on smoking a cigar last night, so I told him he could sleep by himself (rather than breathe that nastiness all over Captain Adorable and me). This morning he told me that he did not realise that his neck does not hurt when he sleeps on the latex bed (which he was not all that enthusiastic about). Last night he slept on the conventional (very firm) mattress he has always loved so much and woke up this morning with his familiar neck ache. So, I guess he is officially converted to latex love. ;)

New Words
Captain Adorable has recently acquired two new words and he shows them off whenever he gets the opportunity. "Toes" and "flowers." It is really cute to have a 16-month-old come up to you and point at your feet and say "toes!" in his little sweet voice. Or when outside or at a garden store, he will point over to some flowering plants and announce "flowers!" (which sounds like "faa!". So sweet!

Family Visits
I am very, very pleased that my aunt (my Mom's twin sister who lives in England) will be coming to visit me this summer! WoooHOOOO! This is the first time I will get to have her as a guest at my house. I am looking forward to showing her my life on a day-to-day basis. I hope that she and Captain Adorable will get to know each other a bit.

My half-sister, who lives in Brussels, is also coming to visit (in early fall) with her boyfriend. I have not seen her in more than 10 years, and at first I was not sure I wanted her to come. Now I am really happy and anticipating having her around. I really look forward to sharing my life and my family with them both.

Ablation Delayed

Well, the good news is I got to come home to my own bed tonight. The bad news is that the ablation was delayed. It has been rescheduled for 2 weeks from today. The reason it was delayed is my white blood cell count was up (almost 23,000)--this is indicative of an infection--so the ablation count not go forward as planned today. The doctors think I might have an undetected UTI, pneumonia, or perhaps a bone marrow infection prompted by chemotherapy. The doctor asked for additional tests to be done on my blood (more about that in a minute), a "clean catch" urine sample, and a CT with contrast (since I had already pre-medicated (Prednisone, which is not terrible but certainly not fun).

I had no elevated temperature, but with a white cell count that high there is infection somewhere. As of 5:28 this evening, additional the blood tests had not been run, so the doctor said that I might have to come in tomorrow to have another blood draw. The CT showed nothing had changed since the last CT (so I guess no pneumonia), and he did not even mention the urine test, so I am guessing this means no UTI. Hopefully the blood tests will get run and I will not have to go in tomorrow, although it will be more convenient than usual since I will be able to leave Captain Adorable with my parents while I make the 45-each-way drive up and back.

I was so happy to come home to my beautiful Captain Adorable and play in the backyard with him and my parents! I know I am not off scot-free, but oh it was soooo nice to come home. The tech who tried to do my IV in the radiology office (to prepare me for the ablation) messed up and hurt me and now I have a swollen, bruised IV site in my left wrist. It hurts. I was freaked out and cried. Captain Obvious cried too. I guess we were both up against that brick wall of reality and reality is scary sometimes. Anyhow, the nurse who did my IV for the CT did such a great job I barely felt it!!! I will ask for that woman in the future, let me tell you!

Turning Myself In

I am dreading the ablation procedure on May 15 (Thursday). I found out this week that it is more likely that I will have to stay overnight in the hospital rather than I will get to go home. I thought the chances of me being admitted were small and was consoling myself with the thought that at least I would get to sleep in my own house after the procedure. Now that I know it is more than likely I have to stay there overnight, the whole thing has become more frightening for me. I feel like an innocent person who has to turn herself in to the authorities for punishment for a crime she did not commit.

The ablation means I will once again have to tolerate all the indignities that come with these procedures. Submitting peacefully while I allow people to insert needles and tubes into my body. Lying still while strangers invade my flesh with instruments. Being friendly and polite and thankful while all I want to do is run away. Being the only one in the room with no underpants on and no control over who touches me, how, and where.

Oh, and there will be pain.

After the procedure I will have to lie in a bed that is not mine, in a hospital gown, in sheets that are not mine and do not smell good. I will be in a room with a dirty floor so I do not feel comfortable being barefoot, so every time I get up to go pee I have to put on shoes to walk to the bathroom. Fortunately my sweet MIL has agreed to stay with me, so that is a big comfort. But I know the night will not be good. I never sleep in hospitals.

And with all of the above on my mind, today is Mother's Day. My second Mother's Day. Another celebration of the most wonderful experience of my life, of the most cherished relationships of my life, and of the reason why I go to turn myself in on Thursday.

Where I Am Now

Met with the oncologist on Monday (April28). She was much much more forthcoming with information--gave more information than at any other visit. This is good. I am not going to say I will definitely stay with her forever and ever but I no longer feel that I should explore switching to the doctor at MD Anderson. Some of the things I learned were: I can take Tarceva as long as I want, or until it quits working. It works, as in, to shrink tumors, in about 10% of patients. But if you define "it works" to include both shrinkage and stopping tumor growth, then it works in about 40% of patients. My oncologist has only one patient who has been taking it for a year. Seems like it may not be a good long term solution. We will see.

Of course, if Tarceva does not work or stops working, the next option is chemotherapy. I asked the oncologist if the fact that these nodules/tumors kept growing during and after chemo means that chemo did not work and she said yes. That does not mean that it might not have killed other much smalled cancers, but it did not work on those tumors. According to my CT scans, there are several other small nodules in both of my lungs, each about 2-3mm in size. These are so small that the doctors cannot tell if they are scars, cancer, or what. They have to be at least 5mm to really even be properly visible on the scans. I worry about the possibility that any of those could grow (or maybe they are growing but they are so small right now it is hard to tell that they are growing). The news that chemo did not work is very very discouraging because when I think of all the sacrifice that was made for me to have that treatment, by many people, and all the sickness I went through, well, it feels discouraging to find it was for nothing.

Or maybe it was for nothing. No one can say for sure if it killed other cancer cells that we cannot see on scans. The next chemo would be rougher. More sacrifice. Still, I don't definitely have to do it yet...

Met with the radiologist on Tuesday (April 29). He was quite friendly, even charming. We met with him to discuss the possibility of doing ablation on my tumors, as a local treatment. He said that the bigger of the two nodules is the one that he would want to do first (they can't do both lungs at once). It is in a difficult spot, high up towards the top periphery of my left lung. There is a big nerve and a big blood vessel nearby, both structures which need to be avoided. He said my ablation was in the top 30% most difficult! But he seemed competent and confident, so I have good hopes that it will be alright. Probably this would be a procedure done in the morning and I could go home in the afternoon, but there is a possibility that I would have to stay overnight in the hospital. There is damage to the surrounding lung tissue, but nothing too bad, and would not take away more than 1% of my current capacity (which is supposedly so great!).

Anyhow, it seems like a good idea, to just kill that growing thing and be done with it. The radiologist mentioned that I could use ablation in combination with Tarceva, so Captain Obvious and I thought that sounded like a good idea. I emailed the oncologist and she said I can start Tarceva after the ablation (it might interfere with healing, so best to start afterwards).

So, that's the plan. I am going to do the ablation on May 15 and start Tarceva after that. The Tarceva will cause fatigue, diarrhea, and skin rash. It is required that you avoid sun exposure when on Tarceva. Perhaps it will help keep me alive for another 20 years.

We took our house off the market. Too much health issue stuff facing me and the house was not garnering enough (rather, any) interest. We're staying here after all.

Captain Adorable is more and more wonderful all the time. While it is true that I love being with him every minute of everyday, sometimes I want Captain Obvious to take care of him on the weekend while I go do something by myself. So far this has happened only maybe once (or twice, I can't remember). This does not mean that I want to take Captain Adorable to daycare, it just means that every now and then Captain Obvious should care for his son while I go have a bit of adult fun!

Yesterday Captain Adorable did something so sweet I have to share. I was holding him and I gave him a couple of crackers. He had them both in one of his little hands, and said "Mama!" and fed me one! I almost dropped him with surprise and pleasure. He's said Mama for quite a while now when calling me, but has never used the word to offer me something! :) He's getting into books again, too. I love having his little body in my lap while I read a book to him and he turns the pages. So cute.

Disappointed and Somewhat Ticked Off

I am disappointed in and somewhat ticked off at my oncologist. I am going to have to become less trusting (what in the hell was I thinking, to go trusting a doctor, anyhow) and even more clearly assertive. Or something.

I may not be able to recount all the details correctly, but I guess it all started when the doctor asked me if my tumor tissue had been tested for EGFR at MD Anderson. I was pretty sure it had not been, since it was like pulling teeth to get Johns Hopkins Hospital (JHH) to send slides and I was pretty sure slides would not be sufficient to do any testing. I never checked, however, and the doctor did not ask me about it again. I kinda forgot about that exchange. Turns out that she asked this because there is a drug (Tarceva) that can be very helpful for treating cancer which has the EGFR mutation (and there is some indication that it might be good even for treating cancer which does not have that mutation). The side effects include rashes, diarrhea, and fatigue. (Which sounds waaaaaaay better than chemo!). The doctor mentioned that there was a clinical trial on Tarceva at MD Anderson.

After researching Tarceva, finding out that my tumor tissue was never tested, writing a letter to the doctor (at her request) to request the test, and being told that I'd have to wait "weeks" for the result, I also did some looking around and found the Tarceva trial at MDA. I read it thoroughly and it looked like I met all the requirements and did not meet any of the disqualifiers. Yesterday I called them to find out if I could join the trial and was told that the trial had met its enrollment requirement and was closed last week; they just hadn't taken it off the web site yet. However, the nurse there also mentioned that Tarceva was now "standard of care" and I could get it from my doctor.

I emailed my doctor to ask about getting Tarceva and her response was "I didn't talk with you about it at our last conversation because you were against doing systemic treatment." My reaction was one of shock and surprise! I never, ever told her that I was against systemic treatment! I may have said something like "Gosh, I never want to do chemo again, haha," but I certainly never said that I would rather have surgery than take a pill with minimal side effects! Why on earth did she interpret my words like that?!

Oh well, it will not really help to be angry. So now I am going to send her an email that clearly and officially states that I want to hear about all treatment options. In the future I will make sure to say that at every visit. And I guess I am going to have to step up my research into treatment options so that I can ask good questions and get as much information out of her as possible. Always a good policy, of course. I just got so scared and overwhelmed that I forgot to subscribe to my usual policy of doctors-know-nothing-so-I-must-research-everything for a while...

Sigh.