Thursday, July 30, 2009

Coincidence Or Fate? (haha)

Yesterday my poor little Captain Adorable was constipated. Badly, badly constipated. I won't go into details, but we were at the zoo and I had to carry my little one out of the exhibit we were in at the time because he would not walk and he would not sit in the stroller. I finally got him to lie down in the stroller and he passed out (fell asleep). When I got home I was still very worried and decided to investigate how best to help. I like Dr. Sears a lot, so I really his advice about constipation in babies and toddlers. One of the things recommended (and I took several of the recommendations) which I did follow, is below:
Make a diagram of the large intestine, showing large "golf balls" of stools at the end of the large intestine. Show your child that voluntarily holding onto his stools makes them harder, and that is why it hurts to pass them.

And we also used a glycerin suppository (another recommendation), which had good results.

Later in the evening, my sweet MIL called and I told her the story above (only with more detail). She exclaimed happily when I mentioned the glycerin suppositories because, as she put it, she had forgotten about those. She thought they'd be the perfect solution to her 86 year old mother's constipation as well.

So, was Capt. Adorable's constipation a coincidence? Or was it fate that he'd be constipated and I'd research the remedy and tell sweet MIL about it?


New Understanding?

Last Sunday the Captains and I went to see some old friends of mine who happened to be visiting Baltimore. They were staying on a boat which was at a slip in the Inner Harbor, so it was lovely to sit and have lunch and chat with the breeze in our hair. When lunch was finished, the adults remained sitting at the table and the two children played nearby. The other couple's daughter is also an only child, very pretty and nice. Despite their age difference (I think she's 8?), she wanted to play with Capt. Adorable, which made me happy.

I talked a long time about my cancer. My friends asked several questions and I gave detailed answers. When I was finally done, the girl persuaded her mother and I to let her take Capt. Adorable to her cabin below. Much to my surprise, they were back in like 2 minutes. Capt. Adorable had obviously been crying and the girl told me, "he started crying because he missed you." I was a little surprised by this since he had wanted to go below.

For the rest of the day, he talked to me about how such and such would make Mama feel better and so and so would keep Mama safe. He was rather clingy and grumpy, which I had chalked up to tiredness (our visit delayed his nap by a couple of hours), but when I thought about the day I realised that although he's heard me talk about cancer before, and of course I have talked to him honestly and openly (yet trying to keep it age-appropriate) about it, but never has he heard me talk about cancer and death so much. I now understand that he heard everything I said and probably understood it also.

How to give my child the respect of being open and honest with him and yet protect him from worry and sorrow? I am not asking for advice, by the way. I am just sharing my struggle to be a good mother and a cancer patient at the same time.


Yes, I have neuropathy. Nerve damage. It consists of numbness in my fingers and feet (toes more than heels) and tingling (feels like I am being poked with a cactus needle or bitten by a ferocious bug!) in my legs. Here's a quote for you from

Although some of the signs of neuropathy may appear suddenly, this change in sensation usually builds gradually and can worsen with each additional dose of chemotherapy. It is usually strongest right after a chemo treatment, but tends to lessen just before the next treatment. The symptoms usually peak about 3-5 months after the last dose of treatment is taken. The abnormal sensations may disappear completely, or lessen only partially; they may also involve less of the body. If neuropathy diminishes, it is a gradual process usually requiring several months. However, in some cases it may be irreversible and never diminish in intensity or the area of the body affected.

I had been noticing the numbness in my fingers for a while, but one evening while I was in Tennessee, I was stroking/tickling Captain Adorable's back to help him fall asleep and I noticed that I could not feel his skin beneath my fingers. I can feel with the palms of my hands, but the sensation in my fingers (especially the finger tips) is greatly diminished. I feel sad about this and the idea that I will never again be able to feel the skin of my little son frightens me and makes me sad.

Friday, July 24, 2009

That Took Forever

Captain Adorable left my parents' place at 9:56 this morning, and thanks to traffic on the Beltway (and the inevitable delays inherent in traveling with a toddler), did not get home till 9:10 tonight. Ridiculous. I am tired and have an aching neck, but oh golly I am so happy to be out of the car!

Also, JHH (and my new oncologist, whom I have yet to meet) sent me a piece of paper indicating that my scan appointment is now on August 12. That is fine with me, but dang it seems only polite to call to me tell me about this instead of doing it now, with so little notice. And perhaps a letter of introduction (or even a fucking phone call) would be good. I am a human being, not just a patient.

Grumble grumble.

Thursday, July 23, 2009

Three Adorable Stories

Adventure In The Bushes
I think it was the second day we were here, all of us went to visit some family friends and Captain Adorable got to ride on a horse! He was much more impressed by the above-ground pool, though, despite the cool day. Anyhow, on the way home we had to stop in town and we took a curvy little road there. I got terribly car sick and had to lie down when we finally got home. Capt. Adorable for some reason ended up wearing only his diaper and shoes. He was outside playing with the incredibly tolerant cat, Fluffy. Mom put on the kettle to make me a cup of herb tea. It was ready a few minutes later, for a total prep time of 10 minutes or so. At that point, I noticed that Capt. Adorable was gone (so was the cat) and Mom and I started to look for him.

I began to call to him, and we heard his little voice. He sounded calm and I wondered if perhaps I was getting crazy, but we followed the sound of the voice (by this time Dad had joined us) to up behind a couple of storage sheds, where there is a big patch of brambles. Capt. Adorable was standing in the bushes there, obviously unable to get out. He began to cry while we were standing there, and Dad swooped in to rescue him. He was transferred to me as soon as Dad got him out of the bushes, and I was reassured that the tears were more about fear than pain, though Oh Me Oh My he was covered in scratches! Once he calmed down enough for us to ask him questions, he told us that he had followed the cat into the bushes, and then he couldn't get back out again. He also said he cried while he was in the bushes, but as I said, he was not crying when we found him there. Quite the little adventure! And of course the scratches on his body were more prevalent because he was wearing only a diaper and shoes.

Problem Solving
At the end of the day, Mom was showing me that her little toe, which we both think she broke a few months ago now, when she was at our house, was swollen. I looked, saw that it must indeed hurt, and commiserated with her. She told me that it was swollen because she had gone barefoot all day. Captain Adorable of course heard the conversation and disappeared into the house. A few minutes later he emerged, carrying Mom's shoes. How sweet is that? And also cool since he heard that she had a problem and he figured out how to solve it!

Mommy's Cancer
My sweet little son has a lovey (aka a security blanket). It is my arm. He insists on holding it and petting it and rubbing his teeth on it and feeling my arm hairs with his lips at bed time, in the morning when he wakes up, and sometimes at other moments throughout the day. This morning again he told me that it was his arm. I protested that it was my arm, as it is attached to my body. He told me that he would cut it off with scissors. Then he added he'd cut my nose off with scissors as well. You see, someone taught him the take off your nose and hide it game and we've had to put up with this behavior, I mean play the game, ever since. Sometimes when he is feeling particularly frisky, he will pretend to eat your nose! Anyhow, he did not go into the nose game and instead told me that he was going to "eat all Mommy's cancer." I thought it was very sweet since he knows cancer makes me sick and he wanted to get rid of it completely for me (and probably for himself, too).

I love my sweet little Captain Adorable. He's had a marvelous time here in Tennessee but we are both looking forward to going home and being reunited with Captain Obvious tomorrow. We will be back!

Sunday, July 19, 2009

Fun in Tennessee

Captain Adorable and I made the drive from our home in Maryland here to my parents' home in Tennessee. Capt. Adorable was really very, very good on the 8+ hour drive, and has been having ridiculous amounts of fun ever since we arrived on Friday evening. It is cooler here than the weather reports indicated, so we are a little under dressed. Fortunately I brought some warm clothes for Capt. Adorable (but none for me!).

Yesterday we went blueberry picking. Unfortunately, because of a late frost, there was much less fruit than we expected, so what we brought home was a bit sparse. I had planned to bring frozen berries home with me, but that's not going to happen. We did have some delicious blueberry pancakes this morning, though!

While at the picking place I started talking to the owner, who has recently undergone a fight with tongue and throat cancer. He had chemo and radiation. He lost a lot of weight because he was unable to eat as his mouth and throat were terribly sore and full or ulcers. Poor guy! Still, the good news is he is in remission at the moment. He told me that his doctor gave him an 85% chance of being cancer free once treatment was done. A tough fight, a long fight...but a successful one so far. I wanted to talk to him, to ask about his experiences with treatment, how he managed fatigue and nausea, but there were several other people around at the time, so the conversation was a group one instead of one-on-one. I was once again treated to remarks like "Oh, but you don't look like you have cancer."

I feel torn about these comments. On one hand, it is nice to hear that people think I look healthy (or is that what people mean when they say these things? Or do they just mean I look fat?). On the other hand, it feels to me like because I do not fit into their idea of what a cancer patient looks like (skinny, weak, et cetera) that they do not believe that my fight, with all its suffering, is real. One woman went so far as to launch into a story about her neighbor (?) who had blood cancer and did very well with chemo. The neighbor was apparently able to sleep for only one day after receiving chemo and then functioned normally. She told me this in response to my saying that chemo was very difficult and that I am worried about how to manage my fatigue for the next round. Yes, I know it is hard to figure out what to say to someone with a Big Scary Disease, but damn yo, telling me that your neighbor could manage chemo just fine makes it sound like you don't believe me when I tell you how difficult it is for me. And let's be real: how much can you know about your neighbor's cancer journey? Or are you just running off at the mouth because you don't know how to be quiet?

Yeah, I sound pissed and maybe some of you will think I am being too hard on the woman. Maybe you are right. Maybe you are wrong.

I am still worrying about what is going to happen next. I do not want to put Captain Adorable in day care. I know I have talked about this before, and I am sure I will repeat myself here...but perhaps I can get a chemo schedule that will still allow me to be his main care-giver. Vitally imoprtant to me to spend every second with him. Because I love him and he deserves as much of his mama as I can give him. A pre-school experience might be really fun and good for him too, I am not counting that out. I just had hoped not to send him to pre-school till he was 3 years old. Or at all.

I realised a few days ago that I have not taken Lexapro (prescription to keep me from getting depressed) for weeks now. Maybe I feel extra sad and worried because of not having the drug in my body. Maybe I feel sad and worried because CANCER SUCKS. August 5 is coming soon and I feel sure that the results will show that the tumors are growing and I have to go back to chemo. It is so confusing; I am lucky to have good health insurance and a suportive family and the ability to get treatment and fucking hell I don't want any of it. Not like I want to die, but like I don't want to need it.

I'm scared and alone. Again.

Thursday, July 16, 2009

Don't Want To

I don't want to have cancer anymore.

I don't want to have chemo anymore.

I don't want to have a CT scan on August 5.

I'm running out of time to be free. Soon it is back to fear and IVs and poison. I am currently hoping that I can keep Captain Adorable with me, away from daycare. Perhaps I am fooling myself...

Wednesday, July 15, 2009

Evening Walk

Yesterday after dinner we went for a walk down to the lake. There is a dock where you can rent paddle boats on thw weekend. The dock is closed off when the boats are not available, and the boats themselves get chained to the dock. We were there looking at ducks, and there were a bunch of people on the boats. They were kids (I'd say 12 and under) and they were playing on the boats. No one was vandalizing anything, no one was rocking or splashing. On the other hand, they were not allowed to be on those boats and at least one kid was jumping from boat to boat. There was a guy who must have come up behind us because he was not there when we arrived, who was upset about the situation before us. He remarked to his companions, "If I was a good parent, I'd tell those kids to get the fuck off those boats." (I laughed silently at his weird choice of words.)

Yes, he did follow through with his plan and tell the kids to get off the boats and they complied.

Today we went to the National Zoo. It was nice weather (a bit hot) and we had a great time. The Bird House was magnificent!

Captain Adorable and I are headed to Tennessee on Friday. Looking forward to spending time with Oma and Opa.

Saturday, July 4, 2009

We're Home

Camping was nice and relaxing and refreshing. We did get rained on but we stayed dry and had a fine time despite the damp. Captain Adorable loves everything about camping (fire, tent, being outside all the time) so he had a great time. I did learn from this trip to bring more warm clothes next time. Also, we need to improve our sleeping equipment. It was fine when The Redhead was a baby, but now that he wants to sleep on his own thermarest by himself, we need more comfy mattress type items.

We took plenty of pics and had some adventures, but I do not have the time to write about them now since I have a ton of laundry to do and cornbread to make. Today is the Fourth of July and we're having some people over to watch the fireworks. Should be fun!