Today we received the following email from our (awesome) nurse practitioner Ilana at UCSF:
The way that Interim Maintenance works is that there are a total of 5 doses (5 clinic visits, other than LP stays usually last about 2 hours)) of IV chemo given over a 2 month cycle (57 days to be exact) the doses are given roughly every 10 days. But with weekends and schedule LP days it can have wiggle room…we usually have it about every 9-12 days or so…protocol says 10 days + or – 2 days. The other thing is we need to separate one of the drugs, the methotrexate, from the septra by a few days so we don’t do Mondays or Fridays.
So with that said here are the days that we will see you guys for this cycle I will make appts for the afternoons but Tuesday we will see you at 2:30: there is no oral chemo this phase. So last day of 6MP should be Monday.
10/13 IV chemo only at 2:30…please put EMLA on port site on days that are not spinal taps.; 10/22 IV chemo only; 11/3 IV chemo only; 11/12 IV chemo and spinal tap; 11/24 IV chemo only. (let me know if this is Ok so close to Thanks giving)
I will need labs prior to each cycle since the therapy is given based on the lab values. Lab days please:
10/12, 10/21, 11/2, 11/10 (11/11 is a clinic holiday for veterans day), 11/23, 12/7
Then we start the next phase called Delayed Intensification on 12/8. So this unfortunately means that she will be doing the toughest part of the therapy during the holidays…did you have travel plans? Or staying close to home?
I read the email on my phone in between clients and meetings with students to talk about dissertations or other goings-on in their academic lives. These clients and meetings allow me to participate in the "normal world," where I am not planning Thanksgiving around spinal taps and Christmas around steroids. My heart sunk as I read the latest chapter of the horror story.
Friday nights and Saturdays are tough in our home and have been ever since I had Declan. We're tired from a long workweek and little sleep, haven't had much time to really talk to each other, and in need of much more time alone than three small children allow for. And now, with Aila's cancer...Friday nights and Saturdays in our house are outright war zones. The problem is that we're exhausted and uncomfortable, and we just CAN'T yell at little babies. So we yell at each other instead. Really, it's the universe we want to yell at, especially these days. This past Saturday, for some reason, was especially bad. We tried taking a walk downtown on Saturday morning, but our conversation quickly turned to an existential one about whether and if it was fair for us to accept the help that people have been offering. At the end of the day, Brian and I are only inches apart in our thoughts about this--namely, we need so much help, but we do not know how to accept it. We were both raised in families where asking for help came at a great cost...so we learned to go it alone. That morning, we fought about (1)"what right do we have? we were the ones who chose to have three children, right?"; (2) "everything's back to normal now that Aila is not in the hospital. it's not fair to ask for help now."; (3) "you want to accept meals and have a family dinner? you don't even do that when I cook!" (Incidentally, that last one was a bit irrational on Brian's part, if you ask me, since he's grilled (not cooked) like 1-3 times in the past 6 months...but I digress). In any case, after we'd been back for a bit from our "family walk" downtown, I couldn't help but be thankful that no Redwood City cops had responded to reports of a loud and argumentative couple with screaming babies on city streets.
Later that night, we tried to calm down, eventually deciding to take a trip to Ikea, ONLY for the purpose of confirming that none of their sofa options were sufficient for our needs (I'm just too damn old to settle for Ikea sofas!). We got there at about 8:30, rushing in since they were closing at 9pm. I held Aila, who is still not walking, in my arms. She was happy, smiling and making jokes. We looked at the sofas for about ten minutes, and just when we were getting ready to call it...I looked down at my little girl in my arms only to realize that she was violently vomiting. Since August, this was the first time this had occurred. We had been expecting it, don't get me wrong. I think it's what we all think of when we think of chemotherapy. It just hadn't happened yet, and so I think we were hopeful that she would be among the lucky ones who skirt such a mean side effect. She vomited twice again on Sunday and then again on Tuesday. What did her father and I feel? Just sadness. This journey seems very long and very lonely, right now. And it is still unfolding. Vomit is vomit, and I can take the sheets off the bed no problem, chuck them in the washer, and remake the bed with clean linen. It's not that, but rather the fact that my little baby is vomiting from the poision that we are injecting into her veins and her spine. Yes, it's killing the cancer. And we know the prognosis is good...we know, we know. But the PROCESS is nothing short of agony.
Sweet dreams, my baby girl. (Fight!) With all my love, your mom
Comments
Angela tana 9 years, 1 month ago
Vicky life's crazy journey can really test you and your relationships; especially the one with your spouse. We are not meant to stay the same. We are meant to evolve and learn to make changes especially when necessary and I'm certain you of all people know this. I wonder if there's anyway you could have a live in nurse or an 'au pair'. The famous quote from Bob Marley reminds me of you right now: "You never know how strong you are until being strong is your only choice". I really hope you can get the help that you need. My cousin used to train au pairs and would place them with families. I can ask her about this (or put you in touch with her if you are interested). Just say the word.
Link | Replyveileen 9 years, 1 month ago
Angie, That quote reminds me of me (and Brian) right now too. I never have understood when people have said that kind of thing in the past. But now I get it. thanks for reading--it means the world. And thanks for the au pair suggestion...if we had more room in our TINY house (the Bay Area is ridiculous), then I'd be asking you for more info. In the meantime, I don't write enough about our absolutely amazing (pre-cancer) nanny who allows us to live each day now without worrying about our beautiful boys.
Link | ReplyGlad you are reading and that we are in touch. In some ways, Bristol seems like a lifetime ago...but in others, I'm glad to carry it with me everywhere I go. :) Love, Vicky
Sarah W 9 years, 1 month ago
Vic- Do not hesitate for one second to text me if you need one single thing!! You hear me?!! Love you all so much - Sarah
Link | ReplyNew Comment