Monday, June 30, 2008

Ablation Follow Up News

Today was full of appointments. I had a CT (without contrast, which caused the staff at the CT place much consternation) at 11:00. I was supposed to be at Phlebotomy to have blood drawn at 12:00 and meet with the nurse practitioner at 12:30, but I ended up doing them the other way around. Then at 1:00 I met with the radiologist to discuss the results of the ablation. I was supposed to go meet the oncology nurse (aka chemo nurse) at 3:00, but we forgot...I will send an email.

Captain Adorable came along to all these appointments with Captain Obvious and I. He is such a sweet, good natured guy! He does become very unhappy when I walk out of the room (he stays in the waiting room with Captain Obvious), and by the time we got to the radiologist appointment he was definitely ready to go home. He fell asleep in the carseat before we even got out of the parking garage!

So, the news was not good. I interpreted it as bad news but Captain Obvious did not. The CT scan shows that there is not enough scarring around the ablation site. Or not enough progression in scarring or something...both Capt. Obvious and I have forgotten how it was phrased... The other tumor (in my upper right lobe) has not grown, so that is good news. It also has not shrunk, which is not surprising, as I have only been taking Tarceva for 2 weeks. The radiologist said that we might have to do another ablation in 3 months (I think 3 months from the original ablation) on the tumor in my left lung if it does not show what he wants to see. I mean, yes, the ablation was not bad as invasive procedures go, but dang, I do not want to do it again and again and again. (This may seem unimportant, but I can just imagine the insertion point scars that will dot my chest. Blech.)

My Tarceva rash is worst on my neck right now. It is rather painful with a lot of burning. My face is developing big red pimples and white heads (look like acne). I just keep washing and slathering on the lotion. I also have the rash on my chest, fingers, right hand and arm, and my legs (unusual to have it below the waist). Fortunately, for the most part it is just unattractive, not painful. I got a prescription today for hydrocortizone cream that I hope will help my neck. The nurse practitioner told me that I must go see an ophthalmologist because my eyes are also being affected by Tarceva. I think I have written before that my vision is blurry and my eyes almost constantly tear. They also, every now and then, start to prick and burn intensely, and I get tears on my cheeks. This side effect may actually cause my Tarceva dose to be lowered. We will see.

I bought 2 big ol'hats today. One of them is "an island" according to Captain Obvious (I got it in black and white). The brim is so wide that it covers my shoulders! the other one is also wide-brimmed but not quite as big. I bought these hats because I have to wear a hat outside, since I cannot put sunscreen on my face and I have to wear sunscreen or the rash will get worse. However I got the big hat because we are going to Hawaii for 2+ weeks in (late Aug to early Sept) and I cannot stop taking Tarceva for that trip, so I need a super super hat to protect my face/neck/shoulders/decolletage from the sun and I think the one I bought will be just the thing. Plus it will come in handy if I ever go to the pool again at the gym. :D

One more thing: because I put so much emollient on my face and neck, it gets in my hair and I look like a total dirty grease head. Oh well. I guess it is better to look like a rashy, pimply, dirty grease head than to die of cancer.

I am going to try to get some photos of my rash and perhaps of me in the giant hat for your viewing pleasure.

Thursday, June 26, 2008

Getting Better?

Well, this morning my face feels better. It is not normal by a long shot, but it is not as burning and painful as yesterday. Captain Obvious even said it looks better (not so lobster-ish as I have been for days). I hope this is a general trend. I sure would like to take Captain Adorable to the pool tomorrow.

Wednesday, June 25, 2008

Rash Is Spreading

Another email I sent...lazy way to to update the blog but there ya go. I feel yucky. I do not want to do anything other than sit on the couch. My little boy needs me, so I interact with him instead. It brings me joy to play with him (and I know it makes him happy too), but oh my aching face and my itchy neck and my watery, burning, blurry eyes...

from Rose
to Nurse Practitioner
date Wed, Jun 25, 2008 at 10:06 AM
subject Rash Is Spreading

Hi Nurse,

Just for the record, here's the latest on my Tarceva side effects. The rash in spreading down my neck to my chest. I have more rash (not much in all, but more) on my right arm and hand, and now there are a couple of spots on my legs as well. My face is extremely dry and itchy. It is painful to the touch, as if I had been hit or something.

I think my eyes are a bit better, though they continue to tear constantly and my vision is often blurry (though not 100% of the time).

I am rarely hungry.


Monday, June 23, 2008

Nurse Practitioner's Advice

Well, according to the Nurse Practitioner, my rash is not that bad. :)

She said there is not much she can do to help my rash, but that I should continue to slather on the emollient. She did say to stop the exfolliation, which I had reported hurt. She reminded me to stay out of the sun or use sun screen (which I cannot imagine putting on my face right now!) I wonder if this means I can't take my little Captain to the pool...I am considering quitting the gym...

She said I should continue to use the eye drops (artificial tears) in my eyes. (Yes, I have keratitis.) I have to go back to see her in a week and at that time we might decide to lower the dose from 150 to 100.

She gave me a prescription for hydrocortisone shampoo (my scalp itches also, yay for me. Not.). I also got a prescription for a sleep aid (Ambien). Can't take that and co-sleep, so I guess we will get the futon up from the guest room and put it in one of the bedrooms upstairs. I'd prefer to have it in our bedroom so if Captain Adorable does need me I will be right I can still be part of the family, if not sleeping in the same bed, at least still in the same room.

Captain Adorable had a few more accidents today, but still peed in the potty on a regular basis.

Captain Obvious is home! I am so glad to finally have him back with us. It is so comforting just to hear his voice (and not over the phone). The three of us went out to dinner (at a local burrito shop, nothing fancy) and it was nice to be just our little family again. Which is not to take anything away from my parents--I love having them here and Captain Adorable loves it even more!

Sunday, June 22, 2008

Potty Learning Update

Today was a very good day from a potty learning perspective. Captain Adorable, at 17 months old, has gone an entire day peeing in the potty with only one peepee accident. He does not say potty yet, but he will take you by the hand and lead you to the bathroom. Or just act really urgent. Or something. I am not sure exactly how he does it, but he always manages to communicate that he needs to sit on the potty! I am so impressed! I am also impressed because he spent a good part of today hanging out with my Mom (without me, because I felt so damn bad today) and he asked her for potty help at least, and probably more than, half of the times he peed. He drank his usual amount (which is better than it used to be, but not much--somewhere between 12 and 30 ounces and today was closer to 30), so it was not as if today there were no accidents because he did not have to pee!

However, this evening the poor thing had some serious poop accidents. I will skip over the details and just say that I am never, ever feeding him TVP (texturized vegetable protein) again. Ever. Ever. Ever.

But yes, once we get the pooping on the potty worked out, this boy will be out of diapers (in our house, when awake, anyway)! I must re-evaluate putting him in diapers for naps because he wakes up dry every time these days...perhaps I should do as I promised myself (and as Diaper-Free Before 3 recommends) and let him stay in underpants 100% of the time, no matter where we are (with water-proof pants on when he sleeps or when we leave the house). I don't have any water-proof pants right now because I have not found any in the stores I have visited. I am going to have to order some online.

More on Tarceva Side Effects

So, Oncologist wrote back and asked that I call her nurse practitioner first thing in the morning (today is Sunday). I am definitely going to do that. Will probably go to see her tomorrow. Meanwhile, I've been doing more research online. I found this altMD article about Tarceva (Erlotinib). Looks like I've hit the jackpot on the side effects, sigh. I also think I have keratitis.

One thing to cheer me up is that "Skin rash actually signifies better outcomes for pancreatic and lung cancer patients."

A Sleepless Night In Emails

If I have not said this already, Captain Obvious is in Colorado to go fly fishing with his uncle. My parents are here in Maryland with Captain Adorable and me.
from Rose
to Captain Obvious
date Sun, Jun 22, 2008 at 2:35 AM
subject feeling like poop

hi honey

it is 2:28 and i am still awake
i partly can't sleep bc i have been having trouble falling asleep for a while now, and partly bc you are not here
but mostly i think it is bc my face feels terrible. my eyes are soooooo itchy, but other parts of my face are bad too. i got up just now to wash them off and put on some sweet almond oil (bc my face lotion BURNS me now) and now my eyes are full of oil and my face and eyes are itchy. at least my face feels less tight. our little one is going to wake me up in like 4 hours. maybe i should just stay up at this point.... HA!

i was asleep before, actually (fell asleep about 1:00 or so) but the neighbors woke me up. the paint guy neighbors. i have the air off and the windows open to make my mom happy.
anyhow, i was woken up by the sound of metal scrapeing. apparently 1:30 in the morning is the perfect time to hang out on the front steps with your entire family and load a grill into the back of your pick up. yeah, they have a pick up not know if it is permanent or was just borrowed for moving their grill...

so did you read the long emergency article? pretty scary shit. maybe we should re-evaluate your idea about buying land...

damn my eyes feel terrible.

love, me

Then I played on Facebook for a while, folded laundry and put it away, played with my cell phone (deleting about 20 old text messages crowding my inbox). A little later I wrote another one.
from Rose
to Captain Obvious
date Sun, Jun 22, 2008 at 4:55 AM
subject WTF?

Is this Tarceva I am taking or is it crack?! I am still awake! I've been down and back up 3 times tonight, not counting the time I went to get my phone to text you. I slept fo approx. half an hour and then the neighbors woke me up like I said in the last face is still itchy though not as bad. I am sneezing a lot...

Call me when you have a chance my love.

Then I decided to have a look on the internetz for some info...among many others, I found the following: Erlotinib - Article. Like I said, there are other articles that say the same thing. So, yeah, I'm one of the lucky 12% who get insomnia. Yippee for me. (Let's hope I get that same kind of pay off when it is time to live more than 5 years past diagnosis...)

I wrote one more email:
from Rose
to Oncologist
bcc Captain Obvious
date Sun, Jun 22, 2008 at 5:11 AM
subject Changes in Tarceva Side Effects

Hi Oncologist,

Some of the Tarceva side effects I had at first are resolving (the sadness and the diarrhea are almost non-existent). However, I am developing dry, itchy, painful skin (even my own tears hurt!) on my face; watery, sensitive eyes; and some serious insomnia (I am writing this to you at 5:00am after a night with approximately half an hour of sleep). I think my eyes might be more sensitive to light. On top of all that, I have a chemical taste in my mouth all the time. I have been getting head-aches. I still have the abdominal cramps and fatigue. So far I have been able to nap when my son naps during the day, but I am worried about losing that as well.

Can I take Zyrtec with Tarceva? I seem to have stronger allergic reactions to everything I am allergic to (mold, dust, cat hair, et cetera).

Can you help me out with these new symptoms?
Thanks, Rose

Let us see what the results of these emails will be...

Saturday, June 21, 2008

Follow-Up on Tarceva Side Effects

Well, I am no longer terribly sad. However, I am still tired. I think my problem of how to get Captain Adorable adjusted to the child care at the gym is solved for now because I am too dang tired to exercise. I can take him to the pool and hang out for 30 mins to an hour, but to go and exercise, deal with the stress of leaving him, then the hassle of showering with him there, et cetera...just too much right now. On other hand, taking him to the pool is still demanding but doable because it is not stressful (though the showering can still be stressful) and there is no crying involved.

I have what looks like white head on my nose and developing on my upper lip. They are more like blisters than white heads, but still they look like white heads...blech. I have some of the rash on my right wrist and a few finger tips, too. The skin around my eyes is really itchy and today I got some sunscreen in one of them and it stung and stung and teared for an hour I think. So irritating. We went to the gym to go to the pool today and it was difficult to drive there because I wanted to close my eyes the whole way...once at the gym, the pool was closed due to some electricity problem (BUMMER) so we (my Mom, my Dad, Capt. Adorable, and I) played with exercise balls and stuff for a while because we could not stuff Captain Adorable back in the car seat after talking up the pool during the entire drive over. From now on, I am going to call and check the pool is open before we leave the house.

I am developing dry, dry skin on my body and my face. It is worst on my face. My Mom did some research online and found this site on dealing with the dry skin Tarceva causes. I will not take all the advise given on the page (I think taking anti-biotics is over-the-top) but I guess I am going to either take over the almond oil (we use almond oil for the little one in this house) or look for a new face lotion because my usual one has now started to burn, burn, burn...

In other news, because I am so tired, I have decided to follow the advice of my Mom and my husband and I have hired someone to come over once a week and clean the house. She is someone I trust, respect, and like; in fact, she is Ms. Resourceful! I think I am going to go grocery shopping while she is here so I will not try to talk to her while she is cleaning (plus Captain Adorable will not be all up in her face while she is trying to work). I am so glad she is able to help me out this way. Goodness knows I can use the help.

Wednesday, June 18, 2008

Tarceva Side Effects

I've been taking Tarceva for 6 days now and I am experiencing quite a few side effects, including one my oncologist has never heard of before. Fair notice: I am going to mention bodily functions, though nothing graphic. ;)

I have abdominal cramps (sorta feel like menstrual cramps). I have a TON of gas. In fact, the other morning I actually woke up both Captain Obvious and myself with a particularly loud one! I am not usually a farter. (Captain Adorable slept through it...lucky thing). I have diarrhea, though not all day long: usually only once per day. Still, my need to get to the toilet in the morning has definitely increased in urgency.

I was very sad the first few days...I cried a couple times a day and got frustrated/defeated easily. This sounds weird, but thank goodness Captain Obvious has been sick and working from home because even though of course he was working, it was reassuring to have him near enough that if I needed a hand all I had to do was call his name. I did call him a few times. The sadness is lessening but I still am not myself.

And, yes, I am tired. I am tired in my bones. It seems like Captain Adorable is heavier and distances are farther and daggumit I think those stairs got steeper.

The latest thing that just popped up today is that I am indeed developing the notorious skin rash (that looks like acne) on my face. I know it is just vanity, but oh this last symptom seems so damn unfair. I've never had pimples and now not only do I have to feel bad, but I also have to look bad. (grumble. sigh.) I cried about it when I noticed it this evening and Captain Obvious told me he had already noticed it earlier in the day and gave me hugs.

I've also discovered that, oh yeah, I am allergic to most sunscreen...or maybe allergic is not the right word. This skin on my body tingles/burns when sunscreen is applied and the skin on my face really does burn. I really dislike the natural sunscreens that I am not allergic to because they are such heavy creams and make my face sweat, not to mention the weird way your face looks when you have on titanium dioxide cream. Anyhow, I am going to have to investigate more natural sunscreens and maybe even buy a nice big sunblocking hat so I can avoid putting sunscreen on my face.

I have been reminding myself that I wanted to take this drug, that I asked for this drug. Even though my EGFR test came back negative, there is a chance that this drug can help me and in the grand scheme of things, the side effects are minimal (especially in comparison with chemotherapy, although Tarceva is considered a type of chemotherapy).

For those readers who do not know, my darling husband loves to fish (fly fishing, thank you!). Well, today we were in an outdoor store getting some fishing supplies for him and I took Captain Adorable over to look at the fish on display in a giant tank. Captain Adorable and I talked about the fish and pointed at the fish and eventually he said "fish." I don't mean the toddler version of the word, either. He really, really said "fish." When Capt. Obvious joined us, he said it again a few times. Then Capt. Obvious got all excited and tried to get a video of Capt. Adorable saying "fish" on his phone/pda/mistress thingy. Captain Adorable would not say it again. He reverted to saying faa ffffaa and pointing! Oh well! We tried. At least I can record the moment in writing, even if we could not get it on video.

This evening I responded to a woman who was posting on the Mothering site, asking for help because she has cancer and is having to wean for chemo (remind you of anyone?). I was, well, happy is the wrong word...I was glad to be able to share my story with her, to offer further help if she needed it, and to tell her that she was not alone. I remember how much the words of experience that I received when I posted on that site helped me.

Friday, June 13, 2008

Started the Drug and A Potty News Bite

I started Tarceva this morning. I feel sad that I have to take it. I cried and Captain Obvious cried with me as we sat on the couch, him holding me in his arms. Captain Adorable joined us and gave me a kiss (oh toddler kisses are the best). I guess I feel sad because it just reminds me that, oh yeah, I have if I needed a reminder. I wrote the oncologist to let her know that I started the drug and to ask for the results of the EGFR test. It has been at least 5 weeks and perhaps 6 or 7 since I asked for the test, so you'd think the results would be back by now.

Captain Adorable had a dry diaper this morning! I took him to the potty and he decided to sit on the little potty instead of being held on the toilet. (Thank goodness; it is not too comfortable to hold him all the time he is on the pot!) He peed immediately. It is so cute to see his proud smile when he pees! Anyhow, it was a small pee and I thought there was no way it was enough because his diaper was dry all night, so I asked him if he wanted to sit on the potty again and he did and it was a much bigger pee the second time. I put his diaper back on and sat back down on the bed. Capt. Adorable went over tot he closed bathroom door, and started making noise while trying to turn the doorknob. Once again it took me a few seconds to realize what he was telling me, but I did (and more quickly than yesterday) and I took him in the bathroom to sit on the potty. Sure enough, he happily did a big ol'pee in the little potty. :) I am so proud of him!

OK, I am going to the gym early this morning. I hope to be able to get in some exercise and then take my little one to the pool and get home in time for the morning nap...we will see!

Thursday, June 12, 2008

Asking to Use The Potty!!

This morning Captain Adorable woke us up at 6:00. Not too bad, but I was hoping for 6:30. :) Anyhow, when I took him to sit on the potty he let out quite a big pee and then when I felt the diaper it was less full than usual. So, I was heartened. I put him in another diaper because I was not ready to deal with pottying when I knew we were going to lie in bed for another little while (we are quite the lounge in bed family! What can I say--we like to cuddle! Or is it that we are just lazy?). That diaper did get peed in--a bit more than usual...

After breakfast I put Capt. Adorable in training pants. I told him several times that he had underpants on and he should tell me if he had to pee and we would go sit on the potty. Well, he peed in the training pants soon afterwards. Still, I put another pair on him. I was cleaning out and loading the dishwasher and he just would not stop bothering me. I asked him to go play with Daddy and to go play with his blocks, but he ignored me and continued to insist I pay attention to him. Finally I got the idea that I took him to the potty and Sure Enough! He emptied his bladder with a proud smile on his face! Now, this could have been coincidence...except that soon after, I was on the phone with my Mom (showing off about the latest development) and he did it again! I am, once again, very encouraged and I feel certain that this potty learning is making its way into his brain.

A little while later he did pee in the training pants, but I took him to the potty as soon as I noticed and once again he peed in the toilet happily. So, if I have not said it enough already, I feel very positive about potty learning right now and I am ready to soldier through a few more days of discouragement if necessary (and I am sure there will be more days full of accidents!).

The one change I have made is the one I talked about in the last blog entry. I have now started to use a book (Hello Bee, Hello Me) and various objects (my keys) to distract him and allow him to relax on the potty. So far this innovation is going well and leads to longer sitting times and less interest in the toilet paper (thank goodness).

OK, it is past nap time, so I better go.

Tuesday, June 10, 2008

Two Steps Forward, One Step Back (Potty News)

Yesterday I joined a gym. It is a really nice gym and I like it a lot so far (of course, today was only my second day). They have child care, and I dropped off Captain Adorable both days. He does not like it much (cries on and off), but the child care workers try to comfort him and call me if he cries for more than 10 minutes. Admittedly, 10 minutes seems an eternity for my darling boy to cry! However, the first day I came back after an hour and I was just walking through the door when they called me over the intercom. My little one was sitting in this 6-kid stroller they have, crying (they take the crying kids to the outside play area to help them cheer ). I did NOT like it that he was just sitting there, strapped in and sobbing. Once in my arms he felt better, but the poor guy was insistant that I had to be in contact with him at all time after that. Made showering a bit difficult! Today I returned after one hour and he was being held (made me feel much better). They told me that he had cried on and off, but calmed down unless someone else was crying and then he got upset. I am glad to hear he was doing a little better. It was very hard for me to leave him there this time--in fact, I pulled him out almost immediately. Then we spent time in the entrance area looking at the other children and the toys in there...I finally left him after much talking and cuddling. I was unhappy to leave him...but I really do want to exercise...sigh.

Yesterday, once we were back at home, we had lunch and a nap. Then I put Captain Adorable in training pants for the rest of the day. I feel a little discouraged because he just pees in the pants, then I take him to the potty and put on a new pair, then 15 minutes later he pees again, we go to the potty and do the whole operation again. Repeat through about 6 pairs of training pants. Plus, every time I see him pooping and take him to the potty, the poop gets scared back up in there! So, I've been putting him in a diaper and in a little while he poops and I clean him up and put him back in training pants...which of course he pees in 10 minutes later...

I am willing to put in the time investment because I know that he is learning about how his bladder works and how to control it but I will admit this is getting kinda old...I have been reading the boards on the Mothering site for hints and tips and I think I am ready to try again. Seems that his peeing after the potty development is pretty normal (aka "peeing beside the potty"). And as far as getting him to poop in the potty, I guess I need to find a way to convince him to sit longer and relax. I am going to have to find something very very interesting (like a cell phone, but not an operating one because whatever he plays with on the toilet might end up in the toilet, as I have already discovered). I had him in diapers this afternoon because I was so discouraged, but after my reading this evening I feel that was probably a mistake...ah well...I am learning too.

Today I took him to the pool after I exercised and I knew he loved water, but wowza, this boy LOVES water! I was almost jealous of the other mothers at the pool who could sit quietly on the side of the pool or in the pool (very, very shallow, designed for young children) while their children played near them, calmly. Capt. Adorable, on the other hand, wants to run around the pool, jump in the deep parts, run away the second I let go of his hand, et cetera. No sitting down for me! :) That's my little one--the fastest kid on the block! :)

I am going to the gym again tomorrow, but in the afternoon, when the child care center is less busy. Perhaps more one-on-one attention will help him to adjust. I am looking forward to going to the pool with both of my Captains over the weekend: it will be much easier with two parents! I think we are going to have to get swimming lessons for Captain Adorable, as a protective measure and because he enjoys it so.

Thursday, June 5, 2008

Couple of Upates

Yeast Infection

For those who did not read the previous post addressing this issue, the yeast infection I am talking about is on the skin of my upper chest--the skin surrounding the ablation site. It is clearing up (after another dose of fluconazole) and is much less itchy, thank goodness.

New Words

Captain Adorable has been adding lots of new words to his repertoire! Here are the ones I can think of right now:

- apple
- cracker
- Daddy's truck
- outside
- dinosaur
- blocks
- ducks
- trash

Potty Learning

We are still just gently introducing sitting on the potty as a normal part of the day. Neither Capt. Obvious nor I has caught any poops in a while. :( Captain Adorable seems to be really taking to the whole thing though. After he pees, he insists on ripping off (or being handed) a piece of toilet paper, which he then throws (between his legs, just like Mama) into the toilet. (hehehe) He loves to flush the toilet and says bye bye to the stuff going down (I did not teach him that and Capt. Obvious says he did not either...maybe my Mom did? If not, he invented it himself!). Then we wash his hands. We need to get a stool (there is one in our storage unit but I think it may be too short) because it is a bit of a chore to hold a wiggly little guy who wants to turn on the hot water and grab the soap while you are trying to wash his hands! Capt. Adorable is also becoming less enthused about diapers. He does not want me to put one on after he sits on the potty and while he does come eventually, he does not seem to want to endure a diaper change after a poop. Well, I am glad this dislike of diapers is coming now, seeing as I want him out of diapers too! :)

Cancer Treatment Options

Since this ablation went so well, we have begun to question whether Tarceva is the right choice for me right now. Perhaps it would be better to have another ablation on the other tumor as well. I want to enjoy my summer and not suffer from exhaustion, skin rashes, and diarrhea and have to avoid the sun...then again, I want to make the right choice for treatment and give myself a good life expectancy. No one knows--not even my own oncologist has been able to say Tarceva over ablation when I asked her in the past. Now we are into the art of medicine...difficult choices...quality of life over potential life saving treatment in the future...but no one knows if the treatment will save my life or not...

Monday, June 2, 2008

Potty Progress

So soon as we wake up in the morning, I ask Captain Adorable if he wants to sit on the potty. He smiles and gets excited. I take him to the bathroom, take off his diaper (standing) and then seat him and hold him on the toilet. So far, despite the wet diaper he has upon waking, he pees every time. Captain Obvious has been putting him on the potty (toilet) every night before the bath and he has peed most of those times as well. We have sporadically gotten him to the potty at other times, and he pees most of those times as well. He has even indicated a few times that he needs to pee (sort of puts his hand on his clothing over the obvious appendage). Both Capt. Obvious and I have caught a poop each, but I am not officially trying for poops yet...The idea is to make the potty a part of his routine: a normal activity. We give praise for sitting on the potty at all, not only if he pees or poops.

Ms. Resourceful loaned me a couple of little potties and a bag-o-underpants, so now the next phase begins. I have one of the loaners on the main floor of the house and one upstairs. So far Captain Adorable sat on the potty in the parking lot (no pee) and again at home (no pee). I am pretty sure that tomorrow morning he will pee in there, though! :) I am not quite ready to add the underpants yet. First we need more experience with sitting on the potty. So, this week we are adding the little potties, which I hope he will sit on by himself (no more being held by a parent). I will probably start to ask him if he wants to sit on it more often, because I will be able to have him sit on his potty while I sit on the toilet (plus I've heard community peeing is a good way incentive).

I do not want to rush anything, but I think the first week that we introduce the underpants we are going to have to be homebodies because I expect there will be lots of accidents!

My yeast infection is alllllmost gone. I took another dose of diflucan (fluconazole, actually) this morning. I think the rash is still itchy because I sweated today. I walked the usual 2 miles around our local park pushing Captain Adorable to the playground and home this morning and then this afternoon I walked another 2 miles with Ms. Resourceful and her 2 children at another park.

Sunday, June 1, 2008

Description of the Ablation

Twenty-four hours before the ablation I started taking prednisone. Prednisone is a steroid and I have to take it because I am allergic to intravenous iodine. Iodine is used as a contrast dye for CT scans and it is administered intravenously. The ablation is CT guided, and they do the CT with contrast. Therefore I have to take prednisone. The side effects (for me) are that it makes me hot, hungry, and have difficulty sleeping (and,as we discovered last time, my white blood cell count balloons!). I have to take the prednisone 24 hours, 12 hours, and 2 hours before the procedure. So, in other words, I go to the hospital for the ablation already feeling under the weather.

I packed water and food--snacks and 3 small meals--in case I had to stay overnight in the hospital. When I was at the hospital recovering from lung surgery in Sept. 2007, I learned that their food sucks and they do not know how to provide for the nutritional needs of vegetarians. I did not want to go hungry and without protein or vegetables this time. I also brought a ton of books. :)

My mom took Captain Adorable for a walk and Captain Obvious and I left for the hospital while they were gone. This way we could avoid the painful goodbye that would probably result in crying from Captain Adorable.

The elevators in the building where I had to go are very, very slow. We were waiting for a while (about 5 minutes or so) before a couple (woman in a wheelchair) showed up. Others people also ended up waiting there in the lobby until finally an elevator arrived. There were a lot of people and just the one elevator; woman who had arrived after us loudly instructed the other people into squeezing together a bit more so that the couple with the wheelchair could fit on the elevator and loudly instructed them to squeeze onto the elevator because other wise they would be "stuck waiting forever." Captain Obvious and I were quite surprised by this action because it left us to wait for another elevator (the woman wasn't making room for us in there!).

I don't really know how I feel about this little incident. I mean on one hand of course it is good to be polite and helpful to a person in a wheelchair, but on the other hand, is it acceptable to be nice to someone in a wheelchair and thereby leave a person who is not in a wheelchair in the lurch? I am suppose I am capable of walking up 5 flights of stairs, but it is not really advisable for someone missing 2/3 of her right lung. Just because I look healthy does not mean I am. We were in a hospital, after all! Was the woman riding in the wheelchair (a hospital one, not her own, so perhaps she was just as able to walk up 5 flights as I am...) permanently handicapped or was she in the wheelchair in anticipation of a procedure? Oh well, no biggie. Just a little something to ponder. We were a little late for the arrival time since we had to wait another 10 minutes for another elevator.

I was a bit surprised by the amount of paperwork I was asked to sign and read, seeing as I had already done the check-in process once before (on May 15) and while I remembered some of the paperwork, there was more this time. Weird.

The nurse called me back pretty quickly, allowed Captain Obvious to come with me without any pleading on my part. She had me give a urine sample (for a pregnancy test) and change into a hospital gown (but I could keep my underpants on!). I asked for the IV in my left elbow since my right elbow was still bruised from the blood draw 2 days before (Tuesday). She was a little reluctant to put it in the elbow, but when I and Captain Obvious told her that IVs were difficult for me and that we'd appreciate it if she could put it there, she complied with my wishes. It was quick and well done, so I only cried after it was in place. That seemed to freak her out a little. I guess people who are around IVs and veins and blood and insertion like that all the time get inured to all that stuff and can't understand my sensitivity, fear, and disgust. She also told me I should get a port. Blech!

My blood counts from the draw the week before and from Tuesday were both normal (don't know what they were), so the procedure was a go. Soon enough an orderly appeared to wheel my stretcher down to the basement room where the procedure would take place. The elevator came quickly that time! I tried to make jokes and talk with him and with Captain Obvious, who was walking along behind, but I must not have been very funny because neither of them laughed much. Once in the basement I was wheeled into a space enclosed by curtains. The resident (Dr. Pun) came shortly and talked with us about the ablation. He answered all of our questions thoroughly and he was very nice and personable. Dr. Hong (the radiologist) came along and said hello as well. I signed the form saying I had been advised of the risks of the procedure and of the alternative treatments I could undertake (and even told the resident one he had missed). Captain Obvious signed as witness to this. I was wheeled away by a tech after a last kiss from my sweet husband.

The room was cold and no one really talked to me. I suppose they were busy. When they did talk to me, they were friendly but short. I had to lie on my back with my arms above my head. A tech and another guy (another tech?) put these freeeeeeezing cold gel grounding pads on my thighs--outer and inner thighs. I became so cold my teeth chattered! Lying there, cold, I finally realized they were going to put the needle through my chest (therefor through my breast) instead of through my back, like I had thought. I don't know why I thought that they'd go through my back--there is a shoulder blade in the way there...they took a couple CTs of my lungs with everyone out of the room, and then there was a delay during which I entertained myself by trying to change the read out on the monitors by doing things like holding my breath and hyperventilating. I only did that when the nurse (who was ignoring me anyhow) was not around. I could not see the monitors very well, but did not notice much change on them. Then everyone came in wearing their lead shield garments and I knew it was about to begin.

They took a few more CTs and so there was a lot of "Take a deep breath and hold it," followed by, "Breathe normally." The nurse put the sedation in my IV without telling me, so suddenly I felt a weird sinking sensation in my brain. It would have been polite, I think, to tell me she was about to do that! I am still a person! The doctor gave my an injection of lidocaine, then I saw the doctor using a pen to mark my chest. Then I realized it was not a pen but a scalpel--he was making an incision where he could insert the needle. He must have seen me picking up my head to look at what he was doing, because he moved a surgical cloth so that I could not see anymore. Probably a good idea and I kept my head still.

My brain was floaty then and I could see their monitors with the section of my chest and the needle on them. I could see the needle sticking out of my chest (not where it entered the skin, but the handle on the needle sort of floating above my chest). Then it hurt hurt hurt inside my lung. I managed to say something like "that's very uncomfortable," and Dr. Hong told the nurse to give me more sedation. Soon after that I fell asleep and I later told Capt. Obvious that I snored loudly (they must have told me that because they did not tell Captain Obvious anything).

I was dizzy and tired from the sedation but I was determined to go home that day, so I kept myself awake and talking. I even ate. There was some pain inside, but not much, and it did go away almost completely before I left the hospital. My sweet MIL came by to check on me and keep her son company, so that helped to keep me awake as well. The nurse checking on me kept asking if my stomach was ok and I kept saying it was. When I finally did get home I walked in the door, made it to the toilet, and emptied my stomach (bathroom is immediately to the left of our front door). Captain Adorable was asleep in the Ergo on my Mom's back.

I went and got in bed and so did Captain Obvious. He fell asleep, but I heard the sounds of my little son awake and I had to go downstairs to say hello to him. The look on his face when he saw me was so beautiful. :) I was very, very happy to be home. The only pain I had was the feeling that there was a large tender bruise on my chest for the first say or so. Now my only complaint is the effing yeast infection, which has spread up to my neck and down to my armpit. I am not sure the diflucan is working!!