Skip to main content

Wow, posting gone wild!

Again, I'm sorry that the posts are getting so far apart. Despite being home from work I'm still busy. Napping is tough work, it takes awhile!!

Today's agenda: Wake up at 4:15am to say bye to Brett, wake up again at 5:45 when mom got home from dropping him at the airport, wake up at 6:30 to be ready to leave a 7am. 7am commute to radiation, 8:10am radiation, 8:25am Oncologist. 9:15 leave oncologist office, 9:20 dunkin donuts, 9:50 to campus, clean apartment and show my mom stuff in the apartment and collect my art supplies to go to Lisa's until 10:30, 10:30 nap until 12:30, shower, 1pm: sneak into work to send two emails, 1:30 lunch, 2:30 arrive at gyno doctor, 3:30 leave gyno, 4pm home, lay in bed until 6pm, (Jason arrives to visit me at 5pm) dinner at 6pm, 7:30, here online, 8pm 45 minute mediation between Jason and cousin Collin. For someone who is TIRED that is a lot of activity. I'm still taking my evening meds in the middle of all this!

Not to get too TMI (too much info) for some of you, but let's just say that what I experienced at the gyno today made me seriously question if reproducing is ever going to be for me. I tend to be a trooper about pain and what I experienced today in terms of pain actually triggered a seizure! What would child birth do?! OHHHHHHH MAN! Food for thought. Me even considering this would drive Jason's parents into a frenzy. They want grandchildren before 2012 and have started putting the pressure on his brother now that I've gotten sick, so shhhh don't tell!

ANYWAYS, getting better is my fulltime job. It really is! Every little thing I do is a calculation of how much energy I have to tolerate doing it. Little things like showering, trips for coffee, eating... stuff I didn't make time for because I was so busy working are now still considered "luxuries." How twisted karma is right? Serves me right and I sure am taking this "medicine" while laughing because it really is ironic.

Yesterday I wrote an email to a friend who has gone through a brain tumor, asking him about when my body would stop feeling foreign to me so I could "push it" like I'm used to doing. So, now I'm soliciting time lines from people so I can go back to my naughty habits. Wow, you can take the girl out of work... but... you can't take the workaholic out of the girl.

I got a lot of people riled up with my last post, many of you felt the need to encourage me to slow down and offered words of wisdom to help me cope with how hard I was taking it. Thank you. What I gathered from those words was this: pushing while I'm trying to heal is likely to kill me faster so stop it already because we love you, AND go do your hobbies you like to do because it's a more relaxing way to stay busy and be my achiever self AND just because you feel good around people does not mean you're lying to yourself or others about how good you are doing. Messages received, thank you, I love you guys too!

So, today I packed up my art supplies, cross your fingers that I will get inspired by something around the house. I'm thinking of facebooking my high school art teacher and asking for an "assignment." I always did well with that, found a way to get excited about it and make it my own. I also got a later radiation time for the next week so that I can sleep in some more. Some friends I made while attending every day finally finished their treatment (YAY!!), so their slots opened up for me to slide on in and get another hour of shut eye and not have my dear mom have to drive in rush hour traffic. I also will still get back here in plenty of time for my nap and to spend some time actually awake while it's light out. AWESOME!

Unfortunately, due to seizure activity they've upped my meds AGAIN and added in a third seizure medicine. This is hopefully will tie me over until my treatment finishes and my "few weeks after." Apparently I don't start feeling better immediately the next day after treatment ends. Of course everyone is different, so no looking at a chart and saying "due to your dosage and length of treatments with radiation you will begin to feel better by x days after treatment". It could still be weeks after before I start feeling better. But, I might get less seizures and that would be cool. Ultimately IF seizures are now a permanent part of my life, there is still the possibility that I will get weaned down to one medicine in order to be seizure free. That will be nice, something to look forward to. In the meantime, my upped dosage may have me a little loopy for a few days while I adjust, I apologize in advance if I get a little grabby. I am affectionate while under the influence as many of ya'll have found out while we went out "dancing" in school.  =) Who knows how I'll figure out how to pinch and tickle all ya'll via the internet. Believe me, I'm finding all sorts of things to get determined about these days, being cyber feisty (in a non-creepy way) may be a fun new thing to try! (Jason just read this and I creeped him out! This is quite a feat as Jason is my "cute creepy").

So, there are still plenty of things to fill my days, I just have to change my focus. Changing perspectives is what I've worked on for a loooooong time (NCBI anyone?) and did some of that tonight (mediation). It's possible, cross your fingers that it happens soon, because then I get to add it to my one less thing to worry about!




From "The Wall of Hope" in Providence RI done after 9-11. Stunning stuff.


Also, just want to reassure you guys that the reason that this post is all over the place has to do with the length of time between and the strange variety of the day, not because my treatment is causing measurable mental decay. =) I'm a little loopy off the meds too, hope it's entertaining to say the least!

Comments

Popular posts from this blog

Butterfly Day

( The title of the last blog post indicated that I needed a simple name for this day. I can't remember if someone suggested it outright, or whether they said something to make me think of it, but either way, the name I now use is Butterfly Day. Torin painted on a picture of a butterfly at school on the very day his mother passed, and his teachers had just so happened to put his name and date on it.) Another year has passed, and it simultaneously seems like a short time and a long time. I do still write letters to Danielle, but just haven't been posting them here. The one I just wrote took a lot out of me, in fact, so this probably won't be a long update. When I took over the blog, one of the things that felt important in continuing this legacy was to document not only the grief process, but the process of healing.  Overall, on a day-by-day basis, I'd say I have come to terms with my loss. By that, I mean that, except for days like today, and on a few rare other occasion...

So this is what the end looks like

Hasn't even been a week this time, and there's more to talk about. Saturday, we hung out. Torin got sick (after three whole days at daycare/"playschool"), so my parents didn't bring him by, as Danielle getting even a cold right now would be not good. Her childhood friend, whom we've become close with again in recent years, had already planned months ago to come to Ann Arbor that day, so she came by at night. We chatted, had some laughs, and it was good. Sunday morning, we were giving Danielle her pills, and one went down the wrong pipe. She wasn't strong enough to cough it up right away, so it was lodged there, causing a lot of discomfort and difficulty breathing. It was scary. I called hospice, and they said "warm sips of water while rubbing her back", so we did that. We think the pill dissolved (at least mostly) after a few hours, but the cough and some wheezing remained. Her friend came by again in the evening, and we established some new stra...

Letter In A Bottle

Today, on what would be her 38th birthday, I wrote a letter to Danielle. It's the first such letter I've written, and it was cathartic. I wasn't sure whether I would just paste it here, or just paste parts of it here, or write something else entirely, but I've decided to share it in its unabridged entirety. It re-treads some ground that I've already covered in this blog, but this was written to Danielle; those were not. Most typos are inside jokes or turns of phrase. Happy birthday, Danielle. I love you. First, foremost, and always. My love for you is unconditional, unquestionable, and unquantifiable. I miss you. Lort, how I miss you. I miss your smile, your wit, your kindness, your grace, your strength, your care, your laugh, your sillies . I miss my partner and companion. I miss my babymama. I miss my wiff. I cry every day. I have a little ritual - my specific time for grieving you. When I put Torin to bed, I play him the last video you made. I can watch the video...