RFA Tomorrow (Wednesday, January 11)

Today I planned to take Capt. Adorable ice skating. Got all dressed and ready and drove there, only to confront a closed gate at the entrance. Of Course! The park is closed on Tuesdays. Boohoo. We were both disappointed.

So, instead we visited a local wild bird food store, went to the library to pick up some books about microscopes and making slides that I had reserved a few days ago, then stopped at the grocery store, and then home. On the way here and there we talked about things ranging from how radio waves are different from sound waves, to letter sounds, to several what-if type questions about the procedure tomorrow. Once home, the discussion got a little more intense and we did cry together a little. I told him that it is normal to worry and that he can always talk to me and Daddy about this. I told him that the doctors are well educated and experienced and that they will be able to make good decisions no matter what happens, even if it is something they do not expect.

Later, we discussion letter sounds some more, and I suggested he write the word "poop" on his chalk board. First he wrote PEP, then when I told him the sound an E makes, he wrote PUP, and then I told him the "oo" sound in "poop" is made with 2 o's. So, he wrote POOP. Then we talked about the word fart. He was able to write FART with some coaching, but no answers, from me. I was so proud. ;) Then he pointed out that dart sounds like fart and we discussed how it would be spelled (he did not want to write it, but did spell it aloud).

A visit to the post office to mail thank-you notes, some driving around the neighborhood, a visit with a friend (and her 2 kids), and then home to cook dinner, where I ran out of steam. We ended up going out to eat and walked over to the bookstore afterwards. It was nice.

Everything is packed for Capt. Adorable's day (and potentially, his night) tomorrow. Now I'm off to  shower and bed.

Captain Obvious may update this blog with news of the procedure tomorrow, or maybe I will. Arrival time is 7:00 am and the RFA is scheduled for 9:00. I was told on the phone that there are 2 reasons for me to stay overnight: 1) if I vomit too much and 2) I must be able to walk. So, the goal is no puking (and accept the anti-nausea meds offered, despite the knowledge that they will cause constipation) and walk walk walk so I can go home home home.

Happy Birthday to Captain Adorable!

Captain Adorable turned 5 on Friday. We had a weekend of fun with family and friends to celebrate.  I am so proud of him and I love him so deeply; there is no joy like the joy of my child. There is nothing I would rather celebrate than him. So happy to share the celebration with so many wonderful people!

My next RFA is on Wednesday. I am hoping to go home but planning for spending the night. So thankful to the friends who are helping our family by taking care of him. Knowing that my son is happy, comfortable, and safe allows me to relax without worry. Goodness knows I have enough worry about.

The idea of myself lying on a table unconscious with a breathing tube down my throat, with the anesthesia team shutting off my breathing freaks me out so much. I really didn't even want to write about it because it makes me super scared and brings up many questions that I do not want to think about since I might lose it if I do.

RFA Do-Over Scheduled

The RFA with general anesthetic has been scheduled for January 11. I am (to my dismay) scheduled for admission....with a chance I could go home the same day...so yes, let's concentrate on the chance of going home...but also have to plan for staying. Thanks to sweet friends and neighbors, Captain Adorable will be in good hands on January 11, so that is all ok. I am sure we can figure out care for subsequent days if it comes to that as well. I just wish I didn't have to stay in the hospital alone (which is what will happen if I have to stay overnight, since Captain Obvious will have to go home to care for Capt. Adorable, thus leaving me to fend for myself). I have such bad memories of staying at JHH after my first thoracotomy...

I called NCI and have to gather a bunch of records since they have requested. Once the records have been reviewed, they will call me to schedule an appointment. They've got a Phase I trial I might be able to participate in, but that is probably not what I want to do. The issue, of course, as always, is that in my case there is no standard of care because my cancer is non-standard. No one really knows the answer...

RFA Rescheduled

The radiofrequency ablation (RFA) I was supposed to have yesterday has to be rescheduled.

I arrived at JHH at 6:45 am. By 9:00 am I was lying on the table of a CT machine and a nurse was sticking (very cold) grounding pads on my thighs.  Then some sedative was put into my IV line and I faded into a warm dreamy place...then the doctor (a radiologist) gave me a shot (which I did not feel) in my chest area and started to give me breathing directions. It seemed as though he wanted me to hold my breath for longer and longer and longer. It was very hard for me to hold my breath so long. He asked me to do it again and again. Finally, he said that we would have to stop the RFA and reschedule. The lesion is in a place where my lung expands and contracts a lot with each breath I take, and it moves around "like a marble in jello." He showed me the images on the screen (remember, this procedure is CT guided, so I am in a CT machine with images being taken the whole time). It is also quite close to my heart. He felt it would be dangerous to insert the needle without greater control of my breathing, so we're going to try again, only this time with me under general anesthesia. Sometime in early January.

I was happy about this, as of course I want the doctor to do what is safest, and I was rather impressed with how very close the lesion is to my heart and goodness knows I don't want that needle in my heart, but I was also a little disappointed and a little worried about having to do this all again.

In the recovery room, my heart rate was so low (I was awake and fine, just lying still, under the effect of the sedation and really sleepy) that the heart rate monitor alarm went off! Obviously the walks I have been taking have made my heart very efficient. Good to hear at least one part of my body is functioning the way it is supposed to! (I have recently been thinking a lot about my lungs and how much I like breathing...)

Got home, napped for a few hours, then tried to rally and join my Captains for an early dinner at my favorite restaurant. I threw it all up when we got home and went to bed soon after that. This morning when I got out of the shower I noticed that I am developing a fungal (yeast) infection on the area of my chest which was cleaned to prep for the needle insertion: all over my breast and upper chest. Good thing I insisted on getting the prescription written at the hospital before I left (I am allergic to the over-the-counter yeast infection medicine). And here's something weird--because the needle has to go in sideways (last time it went in from directly above), it will go through my breast. Which kind of weirds me out. Ick.

Anyhow, here's more information about RFAs if you are interested. It seems that RFA is not widely used for lung cancers at the moment, so this is a pretty cutting edge decision to use this one my cancer! :) Lucky me (and I am not being sarcastic when I say that)!

Radiofrequency Ablation of Cancer (article from NIH Public Access)
Radiofrequency Ablation (There is a video of an ultrasound guided liver ablation here. Only one needle is used for my RFA.)

Admission Ceremony

I was admitted to the Maryland Bar today in an Admission Ceremony at the Court of Appeal. Captain Obvious and my mommy attended as well (the candidates are only allowed 2 guests each). It was pretty cool and I felt pretty happy. I looked good in my suit, too!

At the same time, the shadow cast by the nodule growing in my left lung almost obliterated the significance of the whole event.

Moving forward, moving back, moving forward, moving back, moving forward, moving back...........

I Don't Want To Have Cancer Anymore

I have said the above phrase so many times during the last 4+ years...and it is still true today. I found myself saying it to Captain Obvious just this afternoon. I don't have any answers. The oncologist at JHH told me today that they are recommending RFA and not chemo. I am not sure this is the right answer (but God help me I so don't want to have chemo). I was getting super depressed and deflated with the idea of chemo. And then I got so happy with the idea that I wouldn't have it (the last RFA was so easy!) but my darling Capt Obvious still uses his brain and dammit he's right I should try to get another opinion from NCI.

What if this is the first flake in a snow storm?

What if it is just an outlyer?

How many more times can I do a cut-and-poison routine (aka surgery followed by chemo)? I'd like to live another 40 years. Can I have chemo 20 more times? (I doubt it.) How long can I make this work? I'm back to day one instead of day 700something (my cancer is more likely to reoccur within the first 2 years...here I am, at 2 years and it is back, therefore putting me back at day one).

Tomorrow is my Bar Admission Ceremony. So completely overshadowed; I do not much care. Feeling overwhelmingly that I made the wrong decision and should not have stolen the summer from Captain Adorable.

Buckling My Seatbelt

I am finally home at the end of a long day and I do not have good news to share. I am in for another ride on the treatment train, folks. The CT scan today showed growth again.

The good news is, I have a very slow-growing cancer and the nodule that is growing is still quite small. The bad news is that it is growing. My oncologist, who was totally on the ball this time, has suggested (and I have agreed) to contact the same doctor who performed my RFA back in May 2009 (which successfully destroyed a nodule). He and his attending recommend chemotherapy after the RFA. He will talk to one more doctor, his supervisor, and I will hear from him on Monday and start this treatment very soon. Perhaps before the end of the year.

I have called Captain Obvious (who is on a plane home from California right now), my parents (I told them each separately), my sweet MIL, and I told my friend who was taking care of Captain Adorable. I hope the rest of you will not mind the update via blog because right now I want to eat dinner and do something fun with my son.

Here's a quote from the preliminary report:

9 mm lingular nodule, slightly increased in size and density since the prior study. Suspicious for disease progression. No new areas of involvement.