I opened my eyes this morning thinking it must be around 9 a.m., no rush to exert the energy to tilt my head towards the clock, but when I finally did it was 11:11. I don't know if you make a wish when the clock has all same digits, but I do, and I wished it was 10:10 and I hadn't just slept through acupuncture.
Live and learn and set the alarm clock next time, even when you don't have to be up until 10 in the morning.
Groggy, foggy, wobbly, downstairs for breakfast and back on the couch for a nap. A nice visit from an old friend T, who I don't see much these days as our lives head in different directions, but she is the very first friend I made in RI and she will always be special for that and we'll always be friends, in some capacity or other which is a very good thing, something I am grateful for. We are a funny pair, couldn't be more different, and I like that too.
I was meant to go to a wake this evening for the mom of a very close and cherished friend. Her mom was a lovely, gentle soul who died at barely 60 from cancer because cancer is the king of stinkers. I don't know that going in my shape was the best idea, but I felt so compelled to pay my respects, that I arranged a ride, but my driver got a call at the last minute that her dad in Michigan had a big ole heart attack and she was off to the airport {because we all have shit to deal with so don't feel sorry for me}. She offered her husband to drive me {so kind}, but I thought he should drive her, and that my wobbly, bobbly self probably wasn't much good to anyone at a wake, especially with all my weepy drugs. I'm so sorry I couldn't make it tonight, but I will make it up in some other way.
And then I was hungry. Crazy hungry and dreaming of burgers, something awakened my inner carnivore, maybe we can only subsist on soup, toast and clementines for so long. I tried to fight it, thought about making some pasta, but that would have entailed an effort and thinking, and the craving wouldn't stop, so I got my delivery menu and just ate a $20 {delivery + tip} bacon burger with grilled onions and pickles and half a diet coke and it was a transcendental experience. Didn't get sick and was without the horrible chemo chemical sludge taste in my mouth for 10 minutes.
Then a much needed shower, and the upside of having very little hair is you don't have to worry about winter evening wet-head. It's dry by the time you step out of the shower, although it was strange how I instinctively reached for a comb for the first time in a while -- old habits.
Tomorrow, my goal remains the same... finally leave house for short walk up to Hope Street, go to bank, bakery, mailbox and a few other quick stops along the way... we'll see. And at 2:45 the school bus comes and I get my love-bug back, as it should be! Even the teenager texted me and said "I'll be home tomorrow." Yay!
I think I'll take a nap now.
Thursday, January 5, 2012
Wednesday, January 4, 2012
New Day, but what day is it?
Today was a much better day. I slept until almost 11 and mostly lounged around between the TV, laptop, iPad words with friends and under the blanket on the couch. My, my, what would we do without our electronics? I am slowly working on consignment checks and warning everyone to check my math.
Tomorrow I have acupuncture with the lovely Dr. Xu. On Friday, If I'm feeling adventurous I'll walk up to the bank and then the bakery for bread -- woo hoo, such excitement, then I'm back in my cave laying low until Saturday morning when I'm aiming to go to work, hang out in the shop with my awesome studio-mates who have been holding down the fort, determined to finally get out my big wholesale order that I'd wanted to finish before chemo.
I hate the bad taste in my mouth and that tea tastes like dirt-water, but besides that, I think all is well. I wish it was watermelon season. I can't think of anything I want to eat... too many clementines gets acidic, I think watermelon would be good. Cold, juicy watermelon and maybe cucumbers. I miss corner produce markets.
Tomorrow I have acupuncture with the lovely Dr. Xu. On Friday, If I'm feeling adventurous I'll walk up to the bank and then the bakery for bread -- woo hoo, such excitement, then I'm back in my cave laying low until Saturday morning when I'm aiming to go to work, hang out in the shop with my awesome studio-mates who have been holding down the fort, determined to finally get out my big wholesale order that I'd wanted to finish before chemo.
I hate the bad taste in my mouth and that tea tastes like dirt-water, but besides that, I think all is well. I wish it was watermelon season. I can't think of anything I want to eat... too many clementines gets acidic, I think watermelon would be good. Cold, juicy watermelon and maybe cucumbers. I miss corner produce markets.
Tuesday, January 3, 2012
Heading Underground {for now}
Chemo itself was fine... and I now have another fantastically named medical professional on board -- Nurse Abra, with a long A, so Aaaaabra Caaadaaaabra instead of Abra Cadabra, this fit's nicely with Rochelle Rochelle and Marlene at the Beach, I find symmetry and meaning in all these beautiful exotic caregiver names, like they are just the group for me.
But by 4:00 I was wobbly and slurring my words... by 5:00 my eye's were blurry slits, unable to focus or tolerate light... by 6:00 I was on the couch with an axe-lodged-in-skull caliber headache and churning stomach and nausea. I even phoned the on-call Doctor {drastic} who said it was o.k. to alternate advil and tylenol and hit the nausea meds early which I've done.
And then I did the thing I didn't want to do most... I sent my boys to their father's for the next three nights. I didn't actually send Griffin because he wasn't home from basketball yet, he'll simply have a different post-game destination, but I had to send my love-bug off because it's no good for him to see me clutching my head with tears welling up in my eyes, and nor can I care for him like this, and it would hurt his feelings terribly for me to be unable to engage in our nightly, prolonged, insane, before-bed-chatter-fest, and that would leave me even more demoralized -- bad for everyone, so I think the right thing was to send him off, I hope it was. I really didn't feel like I had much of a choice and sweet boy was a fine, good sport and delivered stuffed animals and chocolates to me on the couch before he left.
I feel so terrible and guilty about how worried he must be, because when you are the tender age of 10, you are not supposed to watch your mother have cancer, this is just cosmically wrong and it makes me furious. If you get the flu and your kid sees you sick, it sucks, but you can tell them you'll be better in a week or so... I have to tell the poor kid I'll be better in a year or so, and that's if all goes well, but I don't tell him that part. He's also never been to his father's for three consecutive nights so I hope he has good days at school and peaceful evenings and all goes well, I hope they can find some, thus far, elusive rhythm over there. I hope I can pop over for a quick visit at some point, but other than that I'm throwing in the towel.
Today at the hospital they told me that I have to get out of the way and let these drugs do their job. I have to relax and rest and be healthy and then just get the heck out of the way and let them work their funky-chemo-mojo-magic {I'm paraphrasing, I admit}. I feel backed into a corner and don't see any other option, so I have to let myself off the hook -- no more delusions about going to the studio, no errands, no homework... at least for a for a few days, which for me... is a really long time. And, well, a little longer if necessary.
I'm having a cup of ginger tea while typing through my hazy snake slit eyes and then going to bed with some podcasts, a warm hat and space heater. I'll be dreaming of the world's biggest margarita waiting for me in an icy, salted glass this summer on a warm, warm evening, and happy pot-luck dinners in my neglected yard, and if I'm tired I can swing in the hammock and listen to happy chatter.
But by 4:00 I was wobbly and slurring my words... by 5:00 my eye's were blurry slits, unable to focus or tolerate light... by 6:00 I was on the couch with an axe-lodged-in-skull caliber headache and churning stomach and nausea. I even phoned the on-call Doctor {drastic} who said it was o.k. to alternate advil and tylenol and hit the nausea meds early which I've done.
And then I did the thing I didn't want to do most... I sent my boys to their father's for the next three nights. I didn't actually send Griffin because he wasn't home from basketball yet, he'll simply have a different post-game destination, but I had to send my love-bug off because it's no good for him to see me clutching my head with tears welling up in my eyes, and nor can I care for him like this, and it would hurt his feelings terribly for me to be unable to engage in our nightly, prolonged, insane, before-bed-chatter-fest, and that would leave me even more demoralized -- bad for everyone, so I think the right thing was to send him off, I hope it was. I really didn't feel like I had much of a choice and sweet boy was a fine, good sport and delivered stuffed animals and chocolates to me on the couch before he left.
I feel so terrible and guilty about how worried he must be, because when you are the tender age of 10, you are not supposed to watch your mother have cancer, this is just cosmically wrong and it makes me furious. If you get the flu and your kid sees you sick, it sucks, but you can tell them you'll be better in a week or so... I have to tell the poor kid I'll be better in a year or so, and that's if all goes well, but I don't tell him that part. He's also never been to his father's for three consecutive nights so I hope he has good days at school and peaceful evenings and all goes well, I hope they can find some, thus far, elusive rhythm over there. I hope I can pop over for a quick visit at some point, but other than that I'm throwing in the towel.
Today at the hospital they told me that I have to get out of the way and let these drugs do their job. I have to relax and rest and be healthy and then just get the heck out of the way and let them work their funky-chemo-mojo-magic {I'm paraphrasing, I admit}. I feel backed into a corner and don't see any other option, so I have to let myself off the hook -- no more delusions about going to the studio, no errands, no homework... at least for a for a few days, which for me... is a really long time. And, well, a little longer if necessary.
I'm having a cup of ginger tea while typing through my hazy snake slit eyes and then going to bed with some podcasts, a warm hat and space heater. I'll be dreaming of the world's biggest margarita waiting for me in an icy, salted glass this summer on a warm, warm evening, and happy pot-luck dinners in my neglected yard, and if I'm tired I can swing in the hammock and listen to happy chatter.
Adventures with AudioBooks
I'm home safe and sound after chemo... if this is my brain, I am the egg in the frying pan. My blood counts were perfect {almost, but close enough}, white blood cells went up all on their own and the fact that I'm having every side effect from chemo is actually a good thing... it means it's doing what it's supposed to be doing and my body is doing what it's supposed to be doing. I'm very excited about my new nausea meds, steroids which might even give me energy, if so, I'll take it. Otherwise, this time around I'm giving in... if I need to sleep for 4 days, I'm sleeping for 4 days, or 6, whatever, I'm not fighting it, I'm losing my denial.
My hospital is building a chemo-wing addition which is testament to the ridiculous number of people that have cancer and need chemo chairs, but this is also very exciting news, because, while my doctor is staying in the old wing... I learned the new wing is going to have an acupuncture room and thanks to a grant, it will likely be free. I might be in there harassing the contractors to hurry up, me needs me some free acupuncture, right now. This is very exciting.
I spent most of my time there today trying to figure out how to download an audiobook to the iPad and while I don't consider myself a techno-dope, might have to get real on that. One of the very distracting side effects of chemo has been my vision, it's blurry and sometimes vibrating, and my head is heavy and tired... not good for reading and I can only handle so many Kardashians. Honestly, my eyeballs are too tired for TV and I find it too loud and annoying and as when boys are home it's usually on for watching or gaming or ignoring... I tend to prefer it off when given the chance.
The object of my desire was Game of Thrones. First I accidentally purchased the eBook, unnecessary because I have the actual book. Then I went to audible.com where you get a "free" audio book with trial membership and with the $15/mo. membership, you get a free book every month and discounts and those audio books are freaking expensive. Game of Thrones is $45. So I signed up to get my free book only to be told my book counts as two books, fuck it, I paid the $22 and tried to download it. Sorry, incompatible with Safari... so I download the Audible App... sorry, you need wifi {not 3g I suppose} or to download to iTunes. Tried iTunes and for the sheer life of me couldn't figure out how to find or download my book. So somewhere out there in the ether, my audio book is floating around, doing me not a whit of good and I'm too tired to figure it out now, but this most certainly, was not a one-click adventure. And if you didn't watch Game of Thrones on HBO, I highly recommend, especially if there's a teenaged boy in your life... nothing says bonding with mom like a little sci-fi and violence, at least for my boy and me. Yep, we've watched Lord of the Rings more times than I can count and we love it equally, and Firefly is another fave, I recommend to everyone on the planet. Best TV series ever, naturally only lasted a year. At least Rex Morgan lasted longer than that, but there is no forgiveness today, I'm about to bombard the editor with my complaints. They rarely publish my letters, but they need to hear me on this Rex Morgan thing, this is serious.
My hospital is building a chemo-wing addition which is testament to the ridiculous number of people that have cancer and need chemo chairs, but this is also very exciting news, because, while my doctor is staying in the old wing... I learned the new wing is going to have an acupuncture room and thanks to a grant, it will likely be free. I might be in there harassing the contractors to hurry up, me needs me some free acupuncture, right now. This is very exciting.
I spent most of my time there today trying to figure out how to download an audiobook to the iPad and while I don't consider myself a techno-dope, might have to get real on that. One of the very distracting side effects of chemo has been my vision, it's blurry and sometimes vibrating, and my head is heavy and tired... not good for reading and I can only handle so many Kardashians. Honestly, my eyeballs are too tired for TV and I find it too loud and annoying and as when boys are home it's usually on for watching or gaming or ignoring... I tend to prefer it off when given the chance.
The object of my desire was Game of Thrones. First I accidentally purchased the eBook, unnecessary because I have the actual book. Then I went to audible.com where you get a "free" audio book with trial membership and with the $15/mo. membership, you get a free book every month and discounts and those audio books are freaking expensive. Game of Thrones is $45. So I signed up to get my free book only to be told my book counts as two books, fuck it, I paid the $22 and tried to download it. Sorry, incompatible with Safari... so I download the Audible App... sorry, you need wifi {not 3g I suppose} or to download to iTunes. Tried iTunes and for the sheer life of me couldn't figure out how to find or download my book. So somewhere out there in the ether, my audio book is floating around, doing me not a whit of good and I'm too tired to figure it out now, but this most certainly, was not a one-click adventure. And if you didn't watch Game of Thrones on HBO, I highly recommend, especially if there's a teenaged boy in your life... nothing says bonding with mom like a little sci-fi and violence, at least for my boy and me. Yep, we've watched Lord of the Rings more times than I can count and we love it equally, and Firefly is another fave, I recommend to everyone on the planet. Best TV series ever, naturally only lasted a year. At least Rex Morgan lasted longer than that, but there is no forgiveness today, I'm about to bombard the editor with my complaints. They rarely publish my letters, but they need to hear me on this Rex Morgan thing, this is serious.
Monday, January 2, 2012
Trepidation
I went into my first round of chemo feeling 100% and had no idea what I was in for. This time, I'm going into it at 50% and I know what to expect, and thus am quite a bit more reluctant and nervous. At the same time, looking forward to it because I feel like the star destroyers have been blasting off only little bits of my tumor and with each chemo, Luke Skywalker gets another chance to hit the target and just blow that death star to smithereens.
I am heeding the call to be smarter and less stubborn about reality. V is meeting me near the end of chemo to walk or drive me home and W is driving Jonah and I to his piano lesson, so no driving for the acid queen. A kind soul has already delivered me medicinal chicken soup for the week.
I have so little hair left, I'm ready for a buzz, but Jonah say's "no". He says I should enjoy the little bit of hair I have left, and he disagreed when I said there really wasn't enough to enjoy and I think my head looks like baby bird... all pale and tufty. The sweet boy is adamant that I don't shave it off and I'm going to do what he says. Maybe he'll get used to the idea, but for now, I'll respect his point of view.
May the force be with us all.
I am heeding the call to be smarter and less stubborn about reality. V is meeting me near the end of chemo to walk or drive me home and W is driving Jonah and I to his piano lesson, so no driving for the acid queen. A kind soul has already delivered me medicinal chicken soup for the week.
I have so little hair left, I'm ready for a buzz, but Jonah say's "no". He says I should enjoy the little bit of hair I have left, and he disagreed when I said there really wasn't enough to enjoy and I think my head looks like baby bird... all pale and tufty. The sweet boy is adamant that I don't shave it off and I'm going to do what he says. Maybe he'll get used to the idea, but for now, I'll respect his point of view.
May the force be with us all.
Where have you gone Rex Morgan, M.D?
Priorities change in a flash. I was worrying about how I'm going to get my nocturnal children {and my nocturnal self} up for school tomorrow and about how to stock up my fridge and clean up my house and finish up some work before chemo tomorrow {not gonna happen, likely}, but that's all changed. My priority now is finding out why the hell my local newspaper has dropped Rex Morgan, MD from the comics page. I'm horrified, outraged and really sad. I've been an avid Rex Morgan fan for longer than I can remember, I'm hooked on the pointless soap opera sagas that take months to play out in only four frames a day. Rex is part of my morning ritual, if I don't have time to read the whole paper, I always flip to Rex Morgan before getting on with my day. This is personal ProJo, you can't do this to me now! Sometimes change is good, but sometimes, it's bad, very bad. You will be hearing from me ProJo Editor! Tampering with the comics page is serious business.
Aside from that trauma, I'm very pleased that I made it through my first chemo cycle without serious incident or visit to the hospital. I'm pleased I have only a minor cold despite having minimal white blood cells. I'm not pleased that I'm starting this all over again tomorrow before feeling recovered, before having any really good days, I had good portions of days, but not whole normal days. Although, while I had many bad days, I didn't have any truly scary or unbearable days... just bad days. Strange when bad days are appealing because they're not awful, horrible days... just really bad. Priorities change, and I suppose so do expectations.
Aside from that trauma, I'm very pleased that I made it through my first chemo cycle without serious incident or visit to the hospital. I'm pleased I have only a minor cold despite having minimal white blood cells. I'm not pleased that I'm starting this all over again tomorrow before feeling recovered, before having any really good days, I had good portions of days, but not whole normal days. Although, while I had many bad days, I didn't have any truly scary or unbearable days... just bad days. Strange when bad days are appealing because they're not awful, horrible days... just really bad. Priorities change, and I suppose so do expectations.
Sunday, January 1, 2012
2012
Happy New Year to all -- may 2012 be jam-packed with fabulosity for you and yours. I remain honored and grateful to all who are reading this blog and offering me so much kindness and support.
I don't have high hopes for the first half of this year, but I'm hoping it ends with relief, renewal, reinvigorated hair follicles and a toast to a much better 2013. If 2012 is my year of challenge and endurance, may 2013 be joy and celebration.
Peace, love and happiness from my grateful heart to each of you... most sincerely.
I don't have high hopes for the first half of this year, but I'm hoping it ends with relief, renewal, reinvigorated hair follicles and a toast to a much better 2013. If 2012 is my year of challenge and endurance, may 2013 be joy and celebration.
Peace, love and happiness from my grateful heart to each of you... most sincerely.
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