Saturday, February 28, 2009

No Nap And Still Going

Well, what with one thing and another, I had no nap today and I am still going at 9:32 in the evening! I am amazed and kind of relishing this, despite the fact that I should probably go to bed now...but it is so nice to be awake like a normal person!

Last night I was subjected to a sweet little dictator, who demanded (out loud) "Mama's arm," at every turn, despite my gentle efforts to extract said arm. Therefore, partly because I feel so energetic, I decided that tonight was the perfect night to re-introduce the idea of Captain Adorable sleeping in his own bed. Ever since Costa Rica, where there really was no other choice in the places where we stayed (as previously discussed), he's been in our bed every my comfort and sometimes to my dismay. I know I have said before how much I love sleeping with our son. How having his little body close by in bed is reassuring while we sleep, and how sleeping together can be a way of reconnecting when illness or chemo pulls us apart, and I think that napping together especially is irreplaceable. Anyhow, he's sleeping there now, even more sweet and cute because he is by himself in his sweet little bed.

Yes, I know I talked before about how I was going to sleep alone while on chemo, but that never happened (which I think is good and bad) but it has worked out fine, so I think we're not going to change the arrangement.

Friday, February 27, 2009

Not Bad

Today I do not feel bad. I don't feel normal, but this morning when I woke up I was able to behave somewhat like a normal me (was able to change the sheets on our bed (sigh--diarrhea diaper leak last night), and make breakfast for Captain Adorable!!). I was even able to drive myself to the hospital to have my white blood counts checked (my poor dad was struck down by a bout of vomiting at the last minute and really could not drive me)! I was pretty tired when I got home and had a 2.5-3 hour nap with Captain Adorable (oh those little moments of joy, even sleeping with my little one brings us closer together) . I am still tired, but not as totally exhausted as yesterday or the day before.

My blood counts are all perfect (YAY!) and the nurse said that probably the effects of the Oxaliplatin are wearing off and that is why I am feeling better. I am also able to touch things that are cool (not truly cold) and drink things that are room temperature (again, not refrigerated stuff), so those effects are abating as well. Thank goodness. I was getting tired of being tired and sleeping 18 hours a day...

Tuesday, February 24, 2009

I'm A Big Complainer

Oh, I just feel exhausted. Last time I did chemo I was determined to be strong, determined to be there for my little baby (he was only 10 months! whew!) and I soldiered on as energetically as possible. This time I feel more drained and less motivated. I feel less hungry, too. I am also more full of complaints than last time as well. I am so grateful that my parents are here to help me. I am such a loser for being all passive-aggressive and complaining in my blog about little unimportant things. I am very lucky to have their help and their attention, and I do not know what I would do with out it. Especially while Captain Adorable had rotavirus (he is soooo much better today, not sitting still at all!) and wanted to do nothing except be held by me. Honestly, who could I hire to do what they do to help me? Even if we could afford it, I have no idea who would do what my parents do for me. I am a big complainer and I should set the record straight and say thank goodness they are here with us now. I just wish they could have a house sitter so we would not have to worry about their dogs and cats getting enough attention and the pipes freezing while they are away.

Vomiting From Both Mother And Son

Yesterday Captain Adorable still vomited up (or coughed up) the food he ate, leading us to ask him to eat smaller portions more slowly...eventually Captain Obvious made him a banana and pear juice smoothie (high in potassium, which is apparently important when you might be getting dehydrated). Today he seems better than yesterday. He's sitting at the table with his grandparents right now, chatting along while they eat breakfast (he's not eating, just feeding Opa). He did not feel well enough to do even that yesterday, so I am taking this as a good sign. He is holding down the 1/2 scrambled egg and banana/pear smoothie he had earlier.

I felt bad this morning as usual. Vomited about 4 times while trying to figure out which meds to take. I do not like looking at those prescription bottles since my body's reaction is so fast and so unequivocal. And yet my Dad did not understand that I needed him to find the drug for me and I was not able to explain it since I was about to vomit. I pretty much need to have things set out for me. But how do you say, uhm, yes, could you wait on me hand and foot please? Difficult to ask, even from my own parents. I guess I am doing it (oh so slyly) by writing about it here...

I also can't drink or eat or hold or touch anything cold because it causes a painful pins-and-needles feeling in my skin (whatever is touched by cold). So this means that when I have to eat something with the chemo drug I have to take, I cannot just pull some hummus out of the fridge to eat because it is cold. So, I have to cook or heat something, which often means that I take the meds a bit late...I wish my Mom could help me a little more with that, also. Oh I am just full of complaints. I feel yucky and tired and excuses excuses.

Yesterday the doorbell rang (as we were changing the sheets after a HUGE diarrhea diaper leaked) and a friend was at the door with a lentil casserole. She did not come in, just handed over the food (oh, and some cookies!!) and left. It was so nice of her to bring us this treat. We had it for dinner and I am sure that we will have some for lunch as well. Delicious and nutritious! Totally sweet of her to take the time to do this, seeing as she's not exactly unoccupied herself, with a toddler and a little baby depending on her.

Monday, February 23, 2009

Hungry Boy!

At about 3 or 4 in the morning last night Captain Adorable woke up and asked his parents for pizza. Neither of us hopped out of bed to give it to him, but when he woke up at 6:30, crying for food, we dragged ourselves out from between the covers to give him a good breakfast. I guess I did not really have to get up, since Captain Obvious makes good breakfast, but I threw up a couple times when we woke up so I decided to come downstairs for tea and meds and to watch my little one stuff his face. He was asking us to go to a restaurant, for sausage, eggs, pizza, all sorts of things! Right now he is sitting next to me at the kitchen table, noshing on an egg and cheese and ham sandwich that Captain Obvious whipped up. Poor guy has eaten so fast that he just coughed up a whole bunch. Yuck. I am now coaching him through eating his breakfast more slowly and with plenty of pauses for little sips of water.

I think my tea is ready, so soon I will take some more anti-nausea drugs and get pulled back to the world of sleep.

Sunday, February 22, 2009

Sick, sick, sick

Well, I feel crappy and tired. Had some vomiting yesterday but we got it under control with the help of three pharmaceuticals...

Anyhow, my poor little Captain has been the sickest little honeypie ever for the last several days. He might have rotavirus! I just took him temperature a few minutes ago and it was normal at last, thank goodness. The thing he wants most is to "hoz mama" and mama is too tired to hoz him all the time, but I do hold him a lot, despite my sort of chronic exhaustion.

He played trains a little with Opa today (really just watched Opa play trains), but he requested it, so we were happy to oblige. Actually, he woke up at 3:30 in the morning and we had a tough time convincing him to go back to sleep because all the wanted to do was play trains with mama!

Not much more to update about. I feel tired and crappy. My family is helping as much as they can.

Friday, February 20, 2009

I Love My Husband

Here we are, in the chemo administration room. I have been stressed out and unhappy despite taking an Ativan before we left the house. He has been patient, accommodating, and has held himself between me and the world I wish not to be in. His chest and stomach were cried on and snotted on, and the comfort of his closeness and his arms around me, his fingers on my neck and upper back helps beyond almost anything. The IV is in my arm and the pre-meds are going in right now. More Ativan is also coming through the tube and it dulls me to my personal emotional pain.

Thursday, February 19, 2009

Chemo Tomorrow

I have not gotten all the things done that I wanted to do in order to prepare for starting chemo tomorrow. But I had a nice all-Mama-and-son-day yesterday. I think it is more important for me to give him (and myself) these precious moments than it is to clean the clutter (crap, papers, odds and ends) out of the kitchen. Went out to dinner with my Captains last night and had a margarita and a half. Last alcohol for a long time (maybe as long as 5-6 months). Last dinner out for a while.

Took Captain Adorable to our swimming lesson (Mommy and Me) this morning, which was nice, except that he was a bit grumpy and demanding to play with toys instead of participating in the lesson. I was amazed that he is now tall enough to stand unassisted in the shallow end of the pool since last time we were there i had to hold him. We both had a good time. My Mom will take him next week.

Then we did a little grocery shopping and when we got in the car at the end, I was sitting in the back with him (not buckled in) to feed him a sandwich and the poor guy threw up all over himself. Sigh. (All my worries and warnings to friends and family to get flu shots and avoid infection...) Poor little one has been getting worse ever since. He's now got diarhea on top of the vomiting. I am going to call my oncologist and ask if we should wait till Monday to start the chemo...

Monday, February 16, 2009

Yes, It Is Still Growing

The CT results show that my tumors are indeed, still growing. Starting chemo on Friday. We will do two cycles, then check for a response and then decide whether to continue. If there is a response, we will do chemo for 6 months. If no response, we will switch chemos (so still do chemo, just a different one, so no idea how long that would be). The fellow (who was super nice today) said that I will probably lose my hair this time--not all at once, but by the end of a 6-month regimen I'll be bald. (During the summer, so at least my head won't be cold.) There is also a greater risk of infection with this chemo than the last one, partly because I have already done chemo once. She actually told me that if Captain Adorable gets sick and has a runny nose, I should let some one else wipe it or wear rubber gloves! Of course, if I get some kind of infection during chemo, I will likely end up in the hospital and goodness knows I do not want that.

So, the regimen we've agreed to looks like this: Day One is IV administration of a drug called Oxaliplatin. I also take a pill form of a drug called 5FU on day one and for the next 13 days (so, 14 days altogether). Then a week of no drugs, then day 22 is day one again. So, two cycles would be six weeks. Six weeks. Then another CT and then a decision of some sort--continue this regimen or switch to a different drug combo.

Hopefully the cancer will either stop growing or shrink. Either of those would be considered a good result.

Going to the dentist tomorrow. Blah. Going to bed now. Mmmmmmmmm...

Making Bread and Fear (and Tears)

I started another batch of the fabulous No-Knead Bread that I've make a few times now. Store bought bread just can't compete! I order to have fresh bread in time for lunch before we leave for the hospital, I had to get up at 7:30 to fold it and shape it. No problem, since I was awake already.

But it gives me an opportunity to stand in the kitchen with Iris Dement blasting and feel sorry for myself. Chemo is so bad. I am frightened of it and I am frightened for good reason; I've done it before. One consolation is that I am looking at 8 weeks and then perhaps a break, instead of 12 weeks at a go like last time. Captain Obvious has already suggested to me that I take an Ativan to help relax. I am not getting hyper, but I am getting sad, and maybe giving up a little already.

For example, my darling, active, curious son seems like quite a challenge suddenly. Little things become very big: Captain Adorable starts out each nap in his own bed, but inevitably he joins us at some point during the night. I know that this is partly because while we were in Costa Rica he slept every night and every nap with us (really? you expect a 2 yr old to sleep in a Pack-N-Play? He took one look at that thing and I knew it wasn't going to happen...or in a bed by himself in a room seperated from our bed by a flight of stairs? Also not going to happen. We just put him to bed in ou bed.). But I worry about this because I do not want to sleep with him when I am all drugged up for fear that I'd hurt him (less likely now than last time I did chemo, when he was 10 months old, but still) and I do not want to sleep with him when I am all weak because he sleeps right up on me, insisting on having my arm around him at all times except during the deepest sleep. This is tiring for me, and if I am already super tired and taxed, I do not think I will be able to meet that need of his. So, where will he sleep? Where will Captain Obvious sleep? We are going to put a couple of mattresses on the floor for them--a futon mattress for Daddy and the crib mattress for little one--in the loft of our bedroom. I will sleep alone in our bed. This way if either I or our son need my husband during the night, he will be close by. I also hope that we can sleep together more often than not, so hopefully this arrangement can be modified easily enough...

Sigh, there are more things that weigh on me heavily that have not bothered me before but I'll not go on. My tea is ready and soon my sweet men will come downstairs. I have to get breakfast ready for my son.

Sunday, February 15, 2009

Bad Things and Good Things

Tomorrow I am going to JHH to get the testing done for a chemo start on Friday. I am all hopped up on Prednisone, as usual, because the JHH doctors want a scan with contrast, despite the fact that I just had one a bit over a month ago. I hate Prednisone. I think I am getting depressed because I am oh so tired and unmotivated. Still have not finished the laundry I started yesterday and left the house a big mess last night. Have not answered emails. Barely remembered that I needed to be pre-medicated in time to take the meds this afternoon. Managed to get a decent dinner cooked for Captain cauliflower, vegetarian patties, and couscous. He mostly just ate the couscous but also ate some cauliflower (one piece he ate raw, snatched from the cutting board while he watched me prep it for steaming. The patties were too crunchy for him, I think. Later he ate some of Captain Obvious' pizza (leftover from last night) in addition. He has lately complained several times about his pants being "too tight" and I've had to let out several of the places I took them in just a few weeks ago! Yipee!

While we were in Costa Rica, Captain Adorable kind of asked about why I go to the doctor all the time. I can't really remember the blow-by-blow, but it was clear to me that he was asking about it (and also clear to Capt. Obvious, who was outside on the veranda, but heard us talking). So, I told him that I have cancer. Of course he does not know what that means, but I am glad that he asked me about it and I am glad that it was me who got to tell him about it. I hope as he gets older he will continue to ask me questions. I look forward to always communicating with my son, even about the bad/sad things. My parents never lied to me (or, not in any meaningful way) and I think it is very important to never lie to my son either. Of course I will explain things in concepts and words that I think he can understand, but I will always explain things more fully if
I am asked.

Two days ago, Captain Adorable told me he loves me for the first time. He has said "yuv you" in response to me before but never initiated the expression before.

Friday, February 13, 2009


Wanted to write a big post about Costa Rica, including some travel tips, but I am tired. We got back yesterday at about midnight. Capt. Adorable and I took a 3 hour nap today and I am ready for more sleep now!

Saturday, February 7, 2009

Costa Rica So Far

OK, here I am, writing my blog from our hotel room's veranda. We are now in Playa Conchal. It is lovely here (yes, we are big losers and we are at a resort). The weather is gorgeous, except for the fact that it is weirdly windy here (and when I say weirdly windy, I mean really windy! At lunch some of the lettuce got blown off my plate by a good gust!). It is hot enough to make you want to jump in the cool pool, but not too hot. Evenings are nice so far. Last night was our first night at this elevation, so it could be different tonight. I kinda doubt it, as everywhere we go, we see outside rooms, by which I mean an area outside with a flat floor and a roof type covering but no walls. I assume Costa Ricans use these rooms to eat, hang out, et cetera. Capt. Adorable likes them a lot.

The day and night before we arrived here we were in Monteverde, which is a beautiful area high up in the mountains, dedicated to protecting the cloud forests there. On vacation Capt. Adorable has been sleeping in "Mama's bed," which is a good thing because it was cold and we were not prepared for that, nor was there any heat in our room! It was cool and I would like to go back there. We went on a walking canopy tour, which means you walk about 3 kilometers in the cloud forest on a nice walk way and every so often you get to go across the canopy (the trees canopy) by walking across these hanging iron bridges. The views are amazing, even if the day is cold and rainy, like it was the day we went. The trail had 8 bridges and by the third one, Captain Adorable saying things like "Dadai, hotel, yes." So it was good we had not shelled out the extra cash for a guide, since we had to hurry our way through the trail (do you know how a miserable two year old can motivated parents? Poor guy.). Of course, Captain Obvious and I were also cold and wet, seeing as I had brought plenty of warm clothes for Capt. Adorable, but NONE for me...and I do not pack for Captain Obvious, so he was also a bit cold. Still, it was amazing and I'd like to go again sometime. I have tons of pics, and will post them when I have a chance.

Today we spent swimming in the pool and playing on the beach. Here, the crazy wind does not make you cold and maybe even prevents you from getting too hot. All of us are having a great time in the pool and on the beach. I think we will all sleep well tonight!

Tuesday, February 3, 2009


We are leaving tomorrow! Going to Costa Rica! Whooo Hoooo!

I decided to leave Captain Adorable at Ms. Resourceful's house this afternoon for a couple of hours. You see, it was an experiment and I hoped it would accomplish two things: 1) allow me to get my toenails pretty for the vacation and 2) just in case we need to childcare for Captain Adorable at some point in the real future (while I am doing chemo). The experiment was successful in that my toes are beautiful and Captain Adorable did not even cry when I left nor at any point while I was gone. In fact, I think he had fun! :) I was gone longer than I expected, which made my little fun indulgence even more expensive than I had planned, but ah well. I will plan better in the future.

(The pedicure was fun, as I expected, but the cool thing was that I met SteadyHands there and so I got to hang out with her and her Beautiful. Baby. Girl! the whole time. The little one even let me hold her and play with her a bit. :) I had fun! Turns out it was SteadyHands' first pedicure! OMG! She enjoyed it so much she was proposing we do it once a month before the polish even went on, so I think I might have pretty toes all summer long.)

However, the bad side effects made themselves known once we got home. Captain Adorable was very hyper and engaged in quite a lot of aggressive behavior, including grabbing food, throwing toys, and hitting me in the face repeatedly, several times. Super. Then, at bedtime, he asked for mama's arm (and he's been weaned off the arm for weeks now) and still could not fall asleep. Ater a while, he moaned quietly a bit, then asked to "hoz mama." I asked, "You want to hold mama?" He replied, "Yes, hoz mama. Yes." I replied, "But how can you hold mama? I can't get in your bed--I'm too big." But he insisted, "Hoz mama. Yes." So, as I was already sitting on the floor (I sit and read while he falls asleep), I leaned back against his bed and put him on my lap, facing me. He kissed and kissed me, even pushing himself up to kiss my forehead ("fo-hez") and saying "Yuv mama." I wrapped a blankie around him and let him relax his head onto my chest (where he can hear my heart beat) and wrapped my arms around him and held him until he fell asleep. So, I am guessing that the bad behavior plus the ultra-neediness at bedtime adds up to indicate some serious mama-withdrawal.

Captain Obvious points out that with more exposure, Captain Adorable would get used to it (and of course we know he is well cared for by Ms. Resourceful and has un playing with his friends), but that makes me a little sad, to think about my little one getting used to being without his mama...Makes me think twice about this, convenient and wonderful as it seems.

Sigh. Am I being clingy? Am I limiting him? Do I feel this way because I am AP? Or because I have cancer (and all that implies)? Or because I also suffered from some withdrawal? I imagine Captain Adorable will end up in mama's bed sooner rather than later tonight. My sweet little man.

Sunday, February 1, 2009

First Hair Cut

I have mentioned here how lately Captain Adorable's hair has been getting in his eyes and how even I, the no-cutting-that-gorgeous-hair advocate, have been thinking it might be best to give him a bit of a trim. Well, I did it; I cut his hair. I had been hoping to give Deelux the honors (seeing as she is a pro), but she's waaaay busy and we're about to go to Costa Rica, and well, the poor boy needs his hair out of his eyes! This morning, with Captain Obvious there to photograph the moment, I gave him a little trim (totally uneven, I am sure, but with beautiful curls like Capt. Adorable has, I don't think it matters too much). I used my second-best sewing scissors and next time I will use my best ones (or maybe next time we will be lucky enough to have Deelux do it!). I put the curls I cut off in a zip lock bag...when I get a locket I can chose the perfect curl to keep inside.