Monday, March 30, 2009

CT Scan Results

The results show that the cancer is not growing. Which means the chemo is working. Which is good news. As my Dad said, this means that everything I am going through is not for nothing. The correlation is that everything my family, and especially my Mom, does to take care of me and Captain Adorable is worth it.

And yet I feel sad and I cried a lot at the doctor's office today. Why? Well, because this means we will continue with chemo. And I hate chemo. I hate being constantly exhausted sick. I hate being nauseated. I hate hating life when I am awake. I was hoping it would be over. But no, it is not over till July. Oh, this is so difficult. I know I should be happy with this news. And I dread more chemo. Next chemo starts Friday. And even in July the break is probably only going to be a month or two.

One good thing. The doctor said that because this treatment is going to be part of my life for quite a while, she wants to figure out a better combination of drugs for me, so that I am not completely knocked out or hating life when I am awake. She said she wants me to be able to have chemo day, not chemo life. That sounds like a fabulous idea to me and so we are going to change up some of the drugs and dosages and hope that I will be feeling a bit better this next time. While also not throwing up.

She also reminded me that I am strong, my blood counts are not dropping (which is kind of amazing), and I have a lot going for me, health wise. She reminds me that my weight gain is from the steroids. She thinks that some type of pulmonary therapy would be a good idea, but since it would require me to find child care for Captain Adorable (which is difficult, expensive, and not attractive to me), she supports my desire to get a bike. Of course, that bike is rather expensive, so I am going to cruise craigslist for a while...wish me luck!

Sunday, March 29, 2009

Beach Weekend

We went to Ocean City for the weekend. It was wonderful to have a change of pace and access to a pool, the beach, the board walk, and a hot tub in the bathroom big enough for our little family to sit in together! There is a particular hotel that we stay in there because it has all the things listed above, and we've gone there 4-5 times already. We really like staying there. We usually go in the off-season, so it is cold and windy and we don't do more than a quick walk on the beach. This time we were able to let Captain Adorable play in the sand for as long as he was interested. He saw a seagull (first one up close) and chased it until it flew off. He then remarked to me "duck doing." Which is his way of saying "What is that duck doing?" I thought it was really cute that he called it a duck and took that opportunity to tell him the proper name. I think he was more interested in the sand, though. He even licked his hands after we left the beach. I guess they were salty? He hasn't eaten sand for ages now.

We also went down to the board walk on both days. We rented a surrey, which is a bike vehicle. The one we rented (for an hour each day) was designed for two people to pedal while sitting side-by-side, with a third sitting on the bench between or on a little bench on the front. Here's an example of what I am talking about.) It was a bit cold because of the wind, but it was a really nice way to cruise the board walk and do lots of people watching. Captain Adorable just wanted to sit on my lap and "drive," i.e. pretend to steer with the steering wheel in front of my seat, but it was impossible for me to pedal with him on my lap and a bit difficult for Captain Obvious to pedal the entire vehicle and its load on his own, so we could only let Capt. Adorable have his wish for short periods.

Captain Adorable also had a fabulous time at the (heated, indoor) hotel pool on both days. On Saturday when we went down, he immediately saw the other kids there jumping in, and proceeded to copy them with glee! It is a little dangerous, actually! Of course Capt. Obvious and I were both in the pool, ready to catch him at any given moment (or to swim around with him or whatever he wanted to do), and he still managed to jump in once when I was not looking at him, which caused me to have to go completely underwater to fish him off the bottom! I did not take my eyes off him again unless I was holding him! He also happily puts his face/head underwater. He needs goggles, though, as his poor little eyes were all red after his adventures! I don't even know if they make goggles small enough to stay on his head!

Unfortunately, I am not feeling good. On Friday I woke up feeling rather bad (weak, head achy, and nauseated), and Captain Adorable did not want to hang out with the mother's helper (who seems to be exactly what I hoped for!), making it difficult for me to get anything done. However, together we convinced him to allow her to go on a walk, pulling him and his babies in his wagon. They stopped at the playground and she assured me he had a great time. I think he was just too excited about the trip to really settle into hanging out with her that day. I was feeling very bad by the time we left, and actually had to ask Captain Obvious to pull over so I could vomit when we were only about 8 minutes from the house. I vomited again later also. This time there was not time to pull over, but I managed to pull out the plastic bag from the diaper bag and the whole thing was contained. I hate chemo. I could not even enjoy a glass of wine with Captain Obvious while we were at the beach because I felt so queasy.

Tomorrow we go to JHH for blood tests and the CT scan that will tell us whether the cancer likes the chemo or not. I almost hope it is still growing so that I can stop chemo and do something else. But that is irrational. The best would be if the cancer hated the chemo so much that it was shrinking, but good news would be that it had just stopped growing. I can't promise an update tomorrow, but I will update to share the news with all of you when I can.

Monday, March 23, 2009

Couple Photos of Pants

Wow Captain Adorable looks like his father in the above photo! As promised, here are a couple of photos of the toddler pants being worn by the toddler. Yes, these are the pants I sewed for Captain Adorable while he and Captain Obvious were out of town for a night and here they are. I never said they were fashionable pants! These pants are made from an old tee-shirt of mine that I acquired the summer I was 20 (dude, 15 years ago!). I was doing a drama course in England. My classmates and I went to see a lot of plays by the Royal Shakespeare Company and I bought a shirt while I was there. I never wore it much, but I think the colors and the design are bright and cheerful enough for a pair of toddler pants. I wish I had not made the legs so wide. I thought they'd be far too long, but as it turns out, they are only a little long and I am not going to hem them further. I don't care that they are white, as I expect them to last only through the summer (perhaps the fall) as indoor lounge pants. Plus, they are made of tee-shirt fabric, and it is usually easy to get stains out of those!

Sunday, March 22, 2009

They're Back

I missed my Captains while they were gone, but they are back now and I am glad. They went up to Holyoke, MA for the St. Patrick's Day parade. My Mom and I dropped them off at the airport on Saturday morning and I picked them up this evening. My little Captain had a great time, seemed totally fine to be without his mama while they were gone, but this evening his stress and unhappiness came out at bedtime, and his behavior showed that he had missed me badly. I missed him a lot too (and was a bit mystified as to what to do with myself while he was gone), and I am not sure I will be ready to be away from him, even for one night, again any time soon.

I did sew 2 pairs of toddler pants from old tee-shirts and one pair of flannel pajama pants for me while they were gone. I will try to get a photo of the toddler modeling the pants and post it for you.

Tomorrow the plan is to go to Jump Zone again (the moon bounce place) and play in the backyard with all the fabulous yard toys!!! Captain Adorable is itching to get his hands on those beautiful plastic cars (like this) and even said the name of the friend to whom the toys belong as soon as he saw them, showing me that he recognized them. I hope he will not mind when we have to give them back in a few months. . . . . . . .

Friday, March 20, 2009

Blood Counts Normal

This photo was taken this afternoon, before dinner.

Today a kind friend took me to JHH for my weekly blood test and it showed that my counts are normal. In fact, my white blood cells are slightly elevated because of the steroids I've been taking (stopped a couple days ago) to prevent nausea. The chemo nurse was impressed by this, to the point of saying "Chemo doesn't touch you." My arm, which is hurting a lot at the point of transfusion, could be hurting because of low-level phlebitis or because of an undiagnosed allergy to lidocaine. She said it is difficult to identify a lidocaine allergy, so next time I go in for an IV we have agreed that I will try nubbing cream instead of a lidocaine injection. Until then I am to take ibuprophen or Tylenol for the pain and to just continue with the warm/heat pad to make myself comfortable. It was nice to have a friend there today since we did not get to leave till almost 1:00! Ugh! So much tiiiiiime spent in the hospital, waiting waiting waiting.

Anyhow, this afternoon I met the person whom I hired as a mother's helper. She will come next week on Tuesday for the first time. I think Captain Adorable is going to really enjoy having her to play with! Ms. Resourceful has (finally) sold her mobile home and is moving into an apartment, so we are hosting her outside toys for the summer. This means that on Sunday we are getting a bigger slide (we have a little one), a couple of cars that are big enough for Captain Adorable to ride in, a basketball hoop, and I do not know what else to play with! Between the warming of the weather, the new play mate, and the loaner outside toys, I think I may indeed get to nap during one or two afternoons next week.

Thursday, March 19, 2009

From Compliments to Breakdowns

Ah, being the mother of a two-year-old is never boring. Sometimes my little darling just can't even get out of bed without breakdown after breakdown and sometimes he charms us all by saying "Thank you for dinner, Oma." Last night was the thank you (he says thank you and please a lot, so I guess I have managed to teach him some manners) and it was super sweet, since I know he enjoyed dinner and since I know he was saying what I usually say (except I do not call my Mom Oma). I think he made her blush with pleasure! This morning was breakdown city. He wanted to brush his teeth (because he saw me doing so) but then freaked out when he was given his tooth brush, wiped toothpaste all over his pajama pants, and threw the toothbrush in the trash. We don't have any spares at the moment. Super.

Today is also swimming lesson day and he does not want to go. I am not going to sign up for swimming lessons again, but I really do not know why he does not want to go! I think we'll go for gymnastics again next (or maybe just have a break from lessons and just enjoy spring). So, my Mom has the no-fun task of convinving him or muscling him into his swimming gear, getting him into the car, and getting him to the lesson. He always enjoys himself once there, so hopefully this time will be fun also, eventually.

I have not updated this blog because I have been sleeping for the last few days. I mean, of course there are patches when I am more awake than others, but I sleep a lot. I am now feeling a bit better, and not taking compazine (anti-nausea drug) means I am more able to stay awake as well. Also my fingers were very stiff for the first couple of days after the IV chemo, which made it very difficult to type.

I am trying to hire a mother's helper to come to the house starting next week for 3 hours in the afternoon. Ostensibly I will sleep while she is here, but I think at first that will not happen. Hopefully she will just provide me with a break, during which she can entertain Captain Adorable (who is also going napless these days, which is an additional challenge at times!) while I chill out on the couch. I posted a couple of very badly written job listings on some local boards, but it was so hard to type I found it exceedingly difficult to correct what I had written. Oh well, fortunately a friend has helped me and has sent a couple of young ladies my way who could be appropriate. I am interviewing one on Friday. So, even though my Mom has to go home on Tuesday I will be ok for the most part I think. Or, as ok as it is going to be in this situation. Man I wish I did not have to do this chemo. It is really hard to be so tired and to try to figure out how to best care for my son. Thank goodness I have my Mom or I would have the additional worry and guilt of being seperated from my cherished little one--something that would not be so good for my mental health!

Thursday, March 12, 2009

Chemo Again Tomorrow

Tomorrow is IV chemo day. Trying to get everything prepared. I have to be there at 9:00 am. I got my pills for the next week plus sorted out as best I could, with Captain Obvious' help, so we are on the same page, instead of me being clueless like last time. I also relabeled some of the bottles so that they would not be so intimidating (read: make me vomit just to look at them) and put the other ones where I will not have to see them every time I open that cabinet door (read: make me vomit just to look at them).

I am still up doing laundry to try to start my Mom off with everything in place instead of a big mess. She arrived this afternoon and played with her grandson until dinner. Which freed me up to make crackers (he loves these Olive Oil Crackers), clean the kitchen a bit, do laundry, and make dinner. And play on the computer, of course...hehe. He only had a 30 minute nap today and he fell asleep in Captain Obvious' arms at about 8:20, so we took him up to bed. I wonder how early he will wake up tomorrow. ;)

I have a CT scan scheduled for March 30...we will see what the results are. I hope that this chemo is stopping growth (and would be ecstatic if the tumors were shrinking!) but I am aware that the results could show continued growth. I do not know what the plan is if there is continued growth, but I do not imagine any of it will be fun!

I imagine I will post from the chemo administration place tomorrow. I will try to describe the place and the process, since I realised recently that I have not done that on this blog...but I am not making any promises...who knows how bad I will feel.

Wednesday, March 11, 2009

Update About Naps

The nap is not entirely gone. It is just extremely shortened. We've also moved bathtime up by a half an hour, so we now begin our bedtime routine at 8:00 instead of 8:30. It took my little Captain about 20 minutes to fall asleep tonight, but he did sleep for about 40 minutes this afternoon (in my lap, so sweet, reminded me of the days when he was a little baby and slept in my arms all the time). Last night he took an extremely long bath because he was fascinated by these wonderful bath crayons I bought him (although the marks do come off of the tile, they seem not to come off grout, just to warn other parents who might think they sound like a good idea). He went to sleep in about 12 minutes last night. I will try to prevent him from napping tomorrow (Oma is arriving in the early afternoon, so that will help a lot) so we can get back to the quicker falling asleep model...

On Friday I go in for chemo again. Not looking forward to that at all. Forgot to take my pre-meds today, so will go in with only 1 day of pre-medication instead of 2. I hope I do not pay for this with further bad nausea afterwards. It is often hard for me to write about nausea while I am having it because thinking about it makes me feel it more, so I often just leave it out when it is happening. The first time I did this chemo I vomited everyday for about 4-5 days afterwards. Tougher than the last chemo, when I only started vomiting at around the third or fourth treatment (would have to confirm that with Captain Obvious, but I think I am correct).

Recently was given a copy of the Bread Bible and so far I have learned a lot! I've only read about 20 pages and I know more about yeast and the fermentation process than ever before. I hope to be able to make bread again a week or so from tomorrow, so maybe I can read and learn and have a new type of bread to make by then.

Tuesday, March 10, 2009

No More Naps

Sigh. It looks like the afternoon nap is now, for the most part, a thing of the past. For some time now it has been increasingly difficult to get Captain Adorable to go to sleep. The devices to help him sleep (singing and/or rocking in Ergo until he falls asleep) became more and more work because the time required for him to nod off became longer and longer. When I realised I was spending an hour plus gently trying to get him to bed, coupled with the fact that he wasn't falling asleep till 10:00, despite our starting the bedtime routine at 8:30, I decided it was time to do away with the afternoon nap. After all, Ms. Resourceful's little one hasn't been napping for months now and Ms. Breadwinner's toddler stopped napping at around the same age as Captain Adorable...and Capt. Adorable isn't really asking for naps anymore. He sleeps if I ask him to, but no matter if I wake him up after one hour (which means dealing with a grumpy boy for about 20-30 mins afterward) he still doesn't go to sleep till 10:00 and I need him to go to sleep earlier with less input from me.

But oh me oh my how I like those naps. If I am tired, I can sleep also. If I am not tired, I get time to play on my computer or whatever I choose, totally uninterrupted. I can count on the nap as a part of the rhythm of the day. I plan activities around it. Shoot, I plan meals around it. And if there is no afternoon nap, that means I am going to have to come up with something to do during the afternoon in addition to whatever morning activity I have planned. Sigh.

Yes, no matter how much I belly-ached to myself, I knew the truth and that was that the nap is done in this house. Unfortunately, the timing is not great for me, since I am more tired now and could use the nap for sleeping myself, but whatever. I will deal. So yes, today is the third day with no (or minimal) nap. If he falls asleep in the car, I let him sleep for 10 minutes (today I even let him sleep for 10 more minutes after we got home, for a total of 20-25 minutes!) rather than try to fight his dropping off while I am driving, which is a losing proposition anyhow. He is a bit more difficult to deal with in the afternoon, for instance he is more prone to getting upset or having a tantrum or a meltdown (although his tantrums are very mild compared with many other toddlers I've heard about), but so far this arrangement is going smoothly.

Last night he fell asleep in approximately 6 minutes and slept from 9:00 in the evening till 7:47 this morning. Perfect. He's in the bath as I write this; we will see how falling asleep goes tonight.

Friday, March 6, 2009

Some Questions Answered

Thank you for reading the blog. I have a story to tell, and this blog is the way I tell it these days. I have a lot to say about motherhood and about my cancer journey (a phrase I hate, but that's another story). I like that I have an audience of people who care about me and/or are interested in what I am going to say next. :) Makes me feel special.

Here are the answers to a couple of questions I was recently asked. As far as eating habits, well, I am a vegetarian, not a vegan. Vegans consume no animal products whatsoever. I use leather and beeswax and I eat eggs and dairy. I am not a vegan. If you want to get technical, I am a lacto-ovo vegetarian. I did give up eggs for about 5 years at one point, but I could never give up dairy. I love cheese! It was also difficult to go without eggs. They are in everything. I do try to eat organic/local as much as possible. Firstly, eating local food and eating organic food (unless farmed in China) really is significantly better for the planet. Secondly, it tastes so much better. Have you ever eaten an organic strawberry? It tastes like a burst of strawberriness. Not like conventionally grown strawberries, which taste nice-ish, but not necessarily very strawberryish. And don't get me started about organic tomatoes! I do not buy 100% organic, but I do follow the Dirty Dozen. (I also eat organic carrots, because I have read that non-organic carrots are often sprayed with sewage as fertilizer and carrots are known for their absorbency powers, even sometimes being used to clean fields for other crops. I do not want sewage carrots, thank you!) The Captains are not vegetarians, as you've read in the blog. When considering the issue of whether or not to raise my child vegetarian, I decided that Capt. Adorable is the child of two parents, only one of whom is vegetarian, and it would be much easier on Captain Adorable in the long run to be omnivorous, not vegetarian. Of course he eats lots of vegetarian food, but he loves the delicious items that Daddy cooks on the grill, too! (Yes, I am aware of the environmental impact of eating meat, not interested in getting into a debate, just writing this to share my particular views.) I enjoy cooking and experimenting and trying new techniques and new dishes, plus since the little one came along we've almost completely stopped eating out. (Which is a good thing.)

Sometimes people tell me that it just isn't fair that I have cancer or that I shouldn't have cancer, or that I am too young for cancer. Well, I suppose those people are right. However, I do have cancer and I have to live with this somehow. It is very easy for me to end up under a huge pile of sadness--one sad thing on top of another on top of me. I do not like to cry in front of my son (although sometimes I do) because it worries him, so I prefer to think about the good things in life and to use those thoughts to motivate myself. I did not want to go to the swimming lesson yesterday, but when I thought about how much he would enjoy it, there was no way I could skip! Do I want to be sick mama? Do I want to go to swim lessons and gymnastics lessons, and for walks, and make apple pie, and bake bread? The answer is easy, for me. I think that if you've been reading this blog for even a short period of time you will know which road I have chosen. For me it is easier and more fun to be happy and hopeful than to get under a pile of sorrow. Don't get me wrong--I am often sad and tired, but not always. See the difference? I also choose not to think about certain questions, like fairness, because there is nothing positive to be gained from asking myself that question.

By the way, I enjoy writing in my blog, which many people read, but hardly any one sends me back communication about themselves! I am not always good about answering long emails in kind, partly because I write in the blog, but I love getting and reading them. I kind of feel like the blog is a parcel of letters and you uys all get to read it, but I never get any letters back...I know, I am contradicting my earlier statement that this blog is mostly for me, but hey I'm a human being. Sometimes I hold two ideas in my head which contradict each other and yet are both true for me.

One sad piece of news: John Cephas, of the blues duo Cephas and Wiggins, died recently. I have plenty of his work on my iPod, and I mourn his passing.

Wednesday, March 4, 2009

Finding Motivation To Get Out Of The House

Even though I'd rather just sit on the couch all day (which I am never allowed to do when my sweet little one is around, nor would I want to, really), yesterday I put a plan in motion--a plan designed to force me to get myself and the little one out of the house and have some fun. I met up with a couple of mommies whom I met in Captain Adorable's gymnastics class last year. We met at open gym (small fee for an hour of being allowed to play with any and all equipment at a local gymnastics facility) and then had lunch together. At open gym there can be no socializing because the children never all want to do the same thing. However, at lunch we got to sit and chat for quite a while (I think a whole hour) which was really nice.

I got the scoop on a local preschool and learned about how one of the mommies taught her oldest child to read at 2 and a half! She is a kindergarten teacher (or was before babies) but still, obviously the main energy behind that was the child himself. As regular readers of this blog know, I learned to read at 3 and I want very much to teach Captain Adorable to read as soon as he is ready, so I was all ears while she told me about their experience! So far my only new plan is to make some index card alphabet flash cards and try them out now and then. I will not be disappointed if Captain Adorable does not take to this and I will continue to read to him on a daily basis no matter what. He can already identify several letters (O, M, and G, and sometimes others as well) and I've made no effort whatsoever to teach those to him. The feeling I get from him is similar to when we first started working on colors--interest but getting frustrated fast. I will not be pushing him--the last thing I want to do is create stress around reading, which is something I deeply love and want very much to share with my child. I want to give him the gift of literacy, which will carry him through a lifetime of entertainment and learning. No way am I going to get heavy handed and eff it up right at the very start!

His current favorite book is Monkey Monkey Monkey by Cathy MacLennan, a recent gift from my Mom. :) It is such fun to read, which is good because sometimes I have to read it 4-5 times a day!

Monday, March 2, 2009


It snowed all night and we've got about 5-6 inches on the ground right now. Captain Obvious got to go in to work late so I made blueberry pancakes for breakfast (I make the batter and he is in charge of cooking them--we're such a great team!). After Captain Obvious left, I got adventerous and dressed up the little Captain like a sausage and took him for a walk (thank goodness for the jogging stroller or we would have come back in much sooner). I was surprised, when we got back, to look at the clock and realise we'd been out for an hour! I took some photos...let's see if I can get one posted...

Sunday, March 1, 2009

Parents Went Home

My parents went home today. I am sad to see them go, especially since I thought my mom was going to be able to stay for a while longer...

Still I am feeling great, so I have no excuse to keep her, do I? I know she will be back soon (only 12 days) and I know that she is more comfortable at her own house (who wouldn't be) but oh I will miss her. It is so nice to have another dedicated Captain Adorable fan around to crow over his every sweet/cute/surprising next phrase/step/maneuver with me!