Sunday, January 27, 2013

Update on My Mom

I've been meaning to update everyone for ages, but I hate to mix this up with breezy tidbits about Calliope.

My mom is doing well. They don't know the exact extent of things because, I gather, the hospital that did the biopsy (she's no longer there) didn't do a very thorough job of things. And indeed, could've done the biopsy at the same time as the initial investigative cystoscopy, when they put a camera inside to look around.

Anyway, she is receiving treatment at Mass General. She will receive six rounds of chemotherapy in total, each cycle totaling 21 days. Day one is the most arduous, about eight hours long, because she has to get blood work first and then a large bolus of fluid before and after the treatment, which includes a kidney-punishing drug. Then she doesn't have to come back until day eight, which is a much shorter day, where she only receives one drug, one that is much kinder to the system. After that, she is "off" for the rest of the cycle.

She starts round three tomorrow.

The first day of the first cycle was very hard for her. In hindsight, it appears that she had a severe migraine in reaction to her anxiety, and then the medications she was advised to take for her migraine completely knocked her out. But we didn't know all that at the time, so it was very alarming to see her so sleepy and not entirely logical. She ended up staying with my brother for maybe as much as a week, sleeping nearly around the clock. Finally he brought her home, because she was well enough to be mostly alone, but still couldn't drive herself. Luckily she has a network of women friends to visit her every day.

For the second round, the nurse practitioner put her on a complicated pre-chemotherapy treatment regimen, starting a few hours before the chemo, that managed her anxiety beautifully. No migraines, no excessive sleepiness, no incoherent conversations. She drove herself home from my brother's apartment the day after treatment.

I expect she will drive herself home again on Day Two of this cycle as well. Phew.

At the end of this cycle, she will have a scan to see how the treatment is affecting her tumor. The hope is that the "shadows" seen on her CT scan of her lymph nodes will have resolved, and that her tumor will have shrunk substantially.

After six cycles, assuming all is well, the doctor will schedule a surgery to remove her bladder and create a new bladder, I believe from a pouch of intestine.

I'm very anxious about the upcoming CT scan, and am fervently hoping for great news. The alternative is too awful to think about.

I feel like if we can just get through this safely, plus knowing that my job is safe... I will very, very grateful for my happy little life.

Calliope and I (yes, a breezy update after all) had a lovely Sunday together, just the two of us, and it was perfect. We went out for breakfast together -- she chewed the cream cheese off of her bagel and left the rest while eschewing my scrambled eggs, hummus, tabouli, and pita -- her loss. Then we visited the playground briefly -- she wasn't too enthusiastic about it. A brief stop at the farmer's market and the health food store, then home for a quick lunch then a two hour nap (love those!) for her while I checked email and worked out. She woke up hysterical, as happens occasionally, so after I failed in my attempts to comfort her, I put her back in the crib and finished my cool down. Then she was happy again, and watched me shower as she tried (and failed) to blow bubbles with her spill-proof bubble container. I tried to explain that successful bubble blowing does not involve putting one's bubble wand inside one's mouth, but she wouldn't listen.

After that, we went for an exciting walk to CVS. In the store, I opted to push her in the cart rather than let her go on a rampage, and since I brought some crackers as the second half of her lunch (part one was a cheese stick), she agreed. So that was uneventful. But the journey there was all sorts of interesting! There were parked cars to stop and stare at, and traffic to ogle, and frozen grass to puzzle over.

We stopped at the fruit stand to buy oranges and mangoes, then tackled the long (one block, approximately) walk home. I didn't have to carry her at all, either way, except for crosswalks!

Then we had a nice, if never quite hot enough for one of us, bath together. We played "If you're happy and you know it" with body parts -- you know, pat your belly, stomp your foot, etc.

It sounds like such a quiet day, and it was. But it's kind of awesome to realize how happy I am to just spend the day together. Before I became a mother, I was worried that I might be bored by hanging out with a toddler. But I'm not, not at all. I love it.

So now I just wonder if I'll be bored hanging out with my school aged child? Does it get more tedious when they can talk all the time? When they stop napping (and going to bed at 6:30 pm)? I feel like I still have it pretty darn easy. I know I'm very, very lucky about that.

6 comments:

  1. That sounds like the perfect day!

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  2. Glad to hear that your mom is handling chemo better. I didn't even know they could create a new bladder like that? Hope everything improves on her upcoming scan.

    Sounds like a great day. Keep in mind that school age kids can play/read/bath/etc. independently, and also play at friends houses....there will still be a bunch of downtime then too!

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  3. It's great to hear that your mom is handling her treatments better. I know that makes it easier on everyone involved, whether the person is the patient or a concerned daughter.

    I find that my favorite days with Tot still involve easy going regular days where we get to connect by doing things that need to be done in a leisurely pace and playing some in between, so that no one feels rushed or put out.

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  4. Glad your Mom is doing alright.

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  5. So glad to hear your mom's treatments are getting easier!

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  6. So glad your mom is doing well, and that they figured out a way to help with the chemo.

    Sounds like a wonderful day! I like spending time alone with Jordyn, too, but sometimes I get lonely, I admit... I like playdates and things with other moms and babies.

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