It's been a whole two weeks since the last treatment. I'm really starting to feel better! The neuropathy is very bothersome, I have some headaches and my concentration/ thinking ability is still shot, but- NO MORE NAUSEA. Nausea is my enemy! I'm the most relieved to not have to deal with that anymore!!
I have been keeping busy with holiday preparations and getting ready for our remodel. A few months ago we got started by having the property boundaries marked and having the designer draw up the as-built plans. Today we have a meeting with him to get started on drawing up the addition. When I first found out I had cancer we put all the plans on hold, but then I realized it was a great project to keep my head a smidgen in reality and it gave me something to dream about. And maybe there's a bit of thinking that we should do the things we want to do, and not put them off...
Wednesday, December 17, 2008
Saturday, December 6, 2008
Dysfunction
The last few days have been very trying. My last chemo treatment is behind me, but I'm forgetting that I still have tons of it left in my system. I keep thinking I can do everything like normal now, and it is frustrating to not be able to do much of anything. My brain just feels fried. And it's making me mad!!! grrrrr.
Wednesday, December 3, 2008
uphill/downhill
Well, this is it. The last one... The last infusion I will ever have to do, or at least I'm hoping for many years before any kind of relapse. At least 5 years would be nice, before I have to deal with this again. But let me repeat, my first choice is to NEVER have to do any more chemo... EVER. I'll be going in for bloodwork every few months, then that will spread out to every 6 months, then once a year. My next appointment is set for Jan. 7.
So, I'm preparing to go in this morning. This involves taking an ativan for anxiety and nausea. Sitting still to keep nausea at bay and hoping to sneak a little breakfast- peppermint tea and a slice of sourdough toast. We'll see how that goes.
Then when I am at the center I quess it will be my usual routine- barf, quickly get my IVs in place, more ativan, then a nice long nap for the rest of the time I'm there. I owe a bit of an apology to some of my dedicated past visitors- Jewelz, Veek, Serafine, Kevin, Amacker, Ethan, Sarah... I don't think I was very good company.
I was talking on the phone with Laura yesterday, we've been scheming up a little Costa Rica trip for when I'm back to "normal". I mentioned that it is all uphill from here. Then I got confused, is it all downhill from here? If it's uphill it sounds like things are going well and things going downhill aren't going well. But it's also that going uphill sounds like more of a battle that you would have to work hard at, and saying it's all downhill from here, means that things will be easier with less obstacles. Or am I making this way more confusing than necessary?
So, I'm preparing to go in this morning. This involves taking an ativan for anxiety and nausea. Sitting still to keep nausea at bay and hoping to sneak a little breakfast- peppermint tea and a slice of sourdough toast. We'll see how that goes.
Then when I am at the center I quess it will be my usual routine- barf, quickly get my IVs in place, more ativan, then a nice long nap for the rest of the time I'm there. I owe a bit of an apology to some of my dedicated past visitors- Jewelz, Veek, Serafine, Kevin, Amacker, Ethan, Sarah... I don't think I was very good company.
I was talking on the phone with Laura yesterday, we've been scheming up a little Costa Rica trip for when I'm back to "normal". I mentioned that it is all uphill from here. Then I got confused, is it all downhill from here? If it's uphill it sounds like things are going well and things going downhill aren't going well. But it's also that going uphill sounds like more of a battle that you would have to work hard at, and saying it's all downhill from here, means that things will be easier with less obstacles. Or am I making this way more confusing than necessary?
Wednesday, November 26, 2008
It worked!
My CA125 numbers went down from 12 to 10! And my blood panel came back with everything normal! I would have danced a little happy dance right there in the office, but I was trying to keep that horrible little anticipatory nausea at bay. I was successful all the way up to the infusion center, where I lost it. Dang. We got the IV's put in and I think I basically slept most of the day. Ethan and Sarah came to hang out towards the end, and we visited with some new friends. She also has ovarian cancer, but for her it has spread quite a bit more. And she is doing the same chemo regimen including with the abdominal port. I am two rounds ahead of her, so it's interesting to compare notes.
So I thank all of you who did whatever version of good luck summoning, especially the crane builders. The doctors sounded optimistic. I asked again what happens next, and it sounds like I'll have an appointment with them one month from this coming Wed. when I do my very last chemotherapy, and they'll check my CA125 numbers again. They're considering opting out of doing a CT scan, because the numbers are so low, and if they don't go up, the chances of finding any tumor is small. At this meeting we'll set the date to take out the port. While taking it out, they'll also be able to do what's called a second look surgery with random biopsies. This will really tell the truth about if there are cancerous cells left. If there is a larger tumor growing, we can send a sample for an assay, but I sincerely believe they won't find anything!
So I thank all of you who did whatever version of good luck summoning, especially the crane builders. The doctors sounded optimistic. I asked again what happens next, and it sounds like I'll have an appointment with them one month from this coming Wed. when I do my very last chemotherapy, and they'll check my CA125 numbers again. They're considering opting out of doing a CT scan, because the numbers are so low, and if they don't go up, the chances of finding any tumor is small. At this meeting we'll set the date to take out the port. While taking it out, they'll also be able to do what's called a second look surgery with random biopsies. This will really tell the truth about if there are cancerous cells left. If there is a larger tumor growing, we can send a sample for an assay, but I sincerely believe they won't find anything!
Tuesday, November 25, 2008
1,000 Cranes
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The most incredible thing happened this evening! Alice and Kelsey (and Kelsey's mom, Molly) came by with the most amazing surprise for us- 1,000 colorful paper cranes suspended on a piece of black bamboo. They, along with other friends from Sarah's school, had been working on in for a while and just coincidentally happened to bring it over today, just after my post asking everyone to do things to bring good luck!! They hadn't even read that post yet, they just happened to be finished and it was time to bring it over! It is so beautiful, it completely blew me away and I could barely speak. We found a perfect spot for it hanging in the window of the front room.
Here's what it said in the card:
In Japan, they say that a thousand paper cranes will bring a lifetime of good luck. Perhaps it is because the cranes must be made by so many hands, or perhaps it is because so much time and energy is put towards the folding. We all wish you the best of luck in your battle.
And it was signed by about 25 people!
I always feel that when there is synchronicity, I am on the right path. I feel stronger now, heading into my next chemo session, and when I need a happy thought to get me through the day, I'm going to be thinking about those cranes!
Monday, November 24, 2008
A Request
Today is blood draw day, and I'll get the results at the oncologist meeting tomorrow morning before chemo. I really really really really hope the CA125 numbers either stay the same or hopefully go down. Last time, when it went up from 8 to 12, I got really upset even though I KNOW that it doesn't mean anything. It still sucked. And I don't need things that suck. Right now I only want things that make me feel better.
So, your job is to find a heads-up penny, wear your lucky underwear, cross your fingers (but not on both hands), toss a coin into a wishing well, carry a lucky charm, find a four leaf clover, blow out all your birthday candles with one breath, hang a horse shoe over your door (open end facing up), have a ladybug land on you, kiss the mezuzah, roll a lucky number 7, do things in sets of 8, make a wish at 11:11, kiss the Blarney stone, break a wishbone and get the big half, pray, knock on wood, rub a rabbit's foot (preferably a live one), make a wish on the first star, pet your good luck pig, rub the Buddah's belly, wear red..
Did I miss any?
So, your job is to find a heads-up penny, wear your lucky underwear, cross your fingers (but not on both hands), toss a coin into a wishing well, carry a lucky charm, find a four leaf clover, blow out all your birthday candles with one breath, hang a horse shoe over your door (open end facing up), have a ladybug land on you, kiss the mezuzah, roll a lucky number 7, do things in sets of 8, make a wish at 11:11, kiss the Blarney stone, break a wishbone and get the big half, pray, knock on wood, rub a rabbit's foot (preferably a live one), make a wish on the first star, pet your good luck pig, rub the Buddah's belly, wear red..
Did I miss any?
Saturday, November 22, 2008
Happy Thanksgiving!
So luckily my good week finally kicked in- we had an early Thanksgiving celebration with some of our (super wonderful) local family today! Complete with 20 lb perfectly cooked turkey, gravy, 2 kinds of sweet potatoes, mashed potatoes, brussel sprouts (from the cruciferous family), the traditional "pink stuff", pumpkin pie, apple cake, cheesecake and tons of other yummys. I am stuffed, happy and very thankful!
Thursday, November 20, 2008
NOT a good week
I just barfed my brains out. And have been having pain in my abdomen, some kind of crampy, some stabbing. Not horrible, but it doesn't feel good that's for sure. And my nose is bloody. And I've been a little depressed, so I've been hiding out a bit. And this is supposed to be my good week!
I went to a gynecologic cancer support group today, and was reminded that the particular drug combo I'm doing (and that I'm doing it IP abdominally as well as IV) is supposed to be one of the harshest. Everyone is always so surprised at how well I am handling it.
argh.
I went to a gynecologic cancer support group today, and was reminded that the particular drug combo I'm doing (and that I'm doing it IP abdominally as well as IV) is supposed to be one of the harshest. Everyone is always so surprised at how well I am handling it.
argh.
Sunday, November 16, 2008
One more...
Coming out of the haze of the last treatment, and it is dawning on me that there is only ONE MORE ROUND TO GO! So, another month and I should be feeling better with all this behind me. Well, except for the abdominal port removal, not exactly sure when that happens. And more blood tests. And lots of finger crossing for no reoccurrences. But I guess I don't need to get ahead of myself.
Right now I'm just happy to have a week off.
Right now I'm just happy to have a week off.
Friday, November 7, 2008
Out of it...
My days thankfully are going by very quickly lately. I've got my line up of things I can take to get rid of the nausea, and some of them make me sleepy. I am all for dozing off and waking up with 4 hours already gone by. Then pretty soon it's time for bed and the next day is already here. Luckily Sarah has a second parent, as I'm not good for much around here except drooling.
3 more infusions left. 1 more bad one, and 2 more medium ones. That seems like a fairly doable amount. Now I'm just hoping that my numbers have time to go back down to those single digits again, this last blood test showed them at 12, up from 8... There is an error margin of + or - 20, which helps make it just about as vague as everything else that's been thrown at me. grrr.
ps. Making me happy lately- my new hats from Louse Bialik. A big box of them! They're made by a survivor of 111b breast cancer, so they are soft and comfy. Here's the contact info:
CJ Hats
Mary Ann Weiss
mare@cjhats.com
www.cjhats.com
I have so many hats (and a pink wig) now, I'm thinking of starting a hat bank after my hair grows back. Take one when you need one, add a few that you don't need any more. Maybe stationed at a local hospital unless they have rules against used clothes. I'll have to look into this.
3 more infusions left. 1 more bad one, and 2 more medium ones. That seems like a fairly doable amount. Now I'm just hoping that my numbers have time to go back down to those single digits again, this last blood test showed them at 12, up from 8... There is an error margin of + or - 20, which helps make it just about as vague as everything else that's been thrown at me. grrr.
ps. Making me happy lately- my new hats from Louse Bialik. A big box of them! They're made by a survivor of 111b breast cancer, so they are soft and comfy. Here's the contact info:
CJ Hats
Mary Ann Weiss
mare@cjhats.com
www.cjhats.com
I have so many hats (and a pink wig) now, I'm thinking of starting a hat bank after my hair grows back. Take one when you need one, add a few that you don't need any more. Maybe stationed at a local hospital unless they have rules against used clothes. I'll have to look into this.
Tuesday, November 4, 2008
Round 5, Part 1
I am dreading tomorrow and the next 2 weeks. I am literally sick to my stomach. I did have a few high points today- Sarah running into the living room shouting, "GUESS WHO'S OUR NEXT PRESIDENT?!!!". Also, my free scoop of Ben & Jerry's (Don't tell my MD...)
Sunday, November 2, 2008
I have become comfortably numb
Well, maybe not comfortably, but I couldn't resist the reference! My latest joy is chemotherapy induced peripheral neuropathy. So the tips of my fingers and toes have partially lost their feeling. Not completely, but I'm sure it will get worse during the next two rounds. I was warned that this would probably happen around the 4th round, so I'm right on schedule. I'm taking vitamin B, which should help, and when chemo is done I'll eventually get back to normal, so I'm not too worried about it.
Monday, October 27, 2008
Bog Person
I thought I'd share my "bog person" shot from Larnie's birthday party the other night, where we imitated ancient mummified people found in peat bogs. You can see the rest of the shots on flickr.
Wednesday, October 22, 2008
Lots of no fun with some fun intermixed
Thanks to a comment left by a certain special somebody on my last post which was about 20 years ago, or so it seems, I'm finally posting. So thanks for that little kick I needed...
Went in today for Round 4, part 2, and it went fine. I took an ativan in the morning, so didn't barf, but still had a small crying meltdown with the nurse. She totally understood. Then they gave me more ativan in the IV and I pretty much slept the entire time. Jewelz came to visit and got a lot done on the scarf she is knitting!
I've been dealing with this nausea which fluctuates between lurking in the background and actually barfing. I now carry a big plastic bag in my backpack just in case. Thankfully, I've been home for the times I would have needed it so far. Oh, except once in the chemo room, waiting for the nurse to start the IV and premeds. I think part of what I'm experiencing is what they call "anticipatory" nausea, more of a mental experience, but the end result is as physical as it gets. I've gotten a few more meds in my anti-nausea arsenal, and I can already tell things are getting better. And the bottom line is that chemo is harsh and no one, no matter what they do can eliminate the side effects completely.
Numbers- I know I said I wouldn't obsess over my tumor marker #s, but since they're still moving in the right direction, I feel this is a cause for at least a minor celebration! Last round my numbers went from 14 down to 9, and this round they went down from 9 to 8 !!! You may all do a small, but rowdy round of tap dancing for me at this point! Ok, you can stop now!! My MD said the goal at the end of chemo was to be in single digits. This puts me in the best possible position moving forward. So now I'm focusing on keeping the numbers from going back up and even better, to keep them creeping downwards.
After a few days dealing with Round 4, part 2, I'm so happy to have a good week coming up! My last good week I did a lot of fun things including going to a live butterfly exhibit with Will and Dot and Sarah, followed by my first time to an icecream shop I've been wanting to go to for 10 years. Also had a great appt. with an MD at an integrated medicine center. He had tons of advice for me, including giving up dairy, sugar and soy COMPLETELY. Not really what I wanted to hear, and now I'm figuring out how I can learn more about this, and try to incorporate it into my life without going totally overboard.
Oh, and I got a new vacuum! You can tell how exiting my life has gotten...
Went in today for Round 4, part 2, and it went fine. I took an ativan in the morning, so didn't barf, but still had a small crying meltdown with the nurse. She totally understood. Then they gave me more ativan in the IV and I pretty much slept the entire time. Jewelz came to visit and got a lot done on the scarf she is knitting!
I've been dealing with this nausea which fluctuates between lurking in the background and actually barfing. I now carry a big plastic bag in my backpack just in case. Thankfully, I've been home for the times I would have needed it so far. Oh, except once in the chemo room, waiting for the nurse to start the IV and premeds. I think part of what I'm experiencing is what they call "anticipatory" nausea, more of a mental experience, but the end result is as physical as it gets. I've gotten a few more meds in my anti-nausea arsenal, and I can already tell things are getting better. And the bottom line is that chemo is harsh and no one, no matter what they do can eliminate the side effects completely.
Numbers- I know I said I wouldn't obsess over my tumor marker #s, but since they're still moving in the right direction, I feel this is a cause for at least a minor celebration! Last round my numbers went from 14 down to 9, and this round they went down from 9 to 8 !!! You may all do a small, but rowdy round of tap dancing for me at this point! Ok, you can stop now!! My MD said the goal at the end of chemo was to be in single digits. This puts me in the best possible position moving forward. So now I'm focusing on keeping the numbers from going back up and even better, to keep them creeping downwards.
After a few days dealing with Round 4, part 2, I'm so happy to have a good week coming up! My last good week I did a lot of fun things including going to a live butterfly exhibit with Will and Dot and Sarah, followed by my first time to an icecream shop I've been wanting to go to for 10 years. Also had a great appt. with an MD at an integrated medicine center. He had tons of advice for me, including giving up dairy, sugar and soy COMPLETELY. Not really what I wanted to hear, and now I'm figuring out how I can learn more about this, and try to incorporate it into my life without going totally overboard.
Oh, and I got a new vacuum! You can tell how exiting my life has gotten...
Monday, October 6, 2008
This made my day- opening the mailbox, finding a package inside (addressed to me!), containing a book with the hilarious title, "Any Day with Hair is a Good Hair Day." Now, last time I got some books in the mail from an unknown sender they turned out to be from Michelle... How are my detective skills, Michelle?
Thursday, October 2, 2008
Movies
Movies I recommend dealing with cancer issues:
Crazy Sexy Cancer- a documentary by Kris Carr
In the Family- a documentary by Joanna Rudnick
The Breast Cancer Diaries- a documentary by Ann Murray Paige and Linda Pattilo
(I'll add on to this post as I go)
Crazy Sexy Cancer- a documentary by Kris Carr
In the Family- a documentary by Joanna Rudnick
The Breast Cancer Diaries- a documentary by Ann Murray Paige and Linda Pattilo
(I'll add on to this post as I go)
Friday, September 26, 2008
Unhinged
I'm in the middle of feeling really crappy a few days after my last chemo. I have aches and pains, mostly in my abdomen, but also in my bones and joints and back, everything tastes disgusting, I feel starving and nauseous at the same time (and that really doesn't go well together), I feel like crying all the time and I just generally feel unhinged. Sure I can take stuff to minimize these side effects (and I do), but the bottom line is that I'm just going to have to feel crappy for a few days.
Monday, September 22, 2008
Wednesday, September 17, 2008
Reprieve
I haven't posted for a while since nothing has been happening and I've been feeling good. Then it occurred to me that this is something worthwhile to share- I'M FEELING GOOD!! Last week following chemo wasn't bad at all, and now I've got a week off. Paul and Margaret are coming to visit from L.A. for the weekend and we have some fun things planned including a fire spinning party, a drawing workshop, brunch and a Crank Ensemble show. Can't wait!
Tuesday, September 9, 2008
numbers and dates
Tomorrow is round 2, part 2 of chemo. I still haven't bounced back from part 1, so, not really feeling quite ready. A few people have lamented bloggers lack of a calendar, so here's the rundown on my schedule:
9/10- Round 2, part 2
9/24- Round 3, part 1
10/1- Round 3, part 2
10/15- Round 4, part 1
10/22- Round 4, part 2
11/5- Round 5, part 1
11/12- Round 5, part 2
11/26- Round 6, part 1
12/3- Round 6, part 2
(all Wednesdays)
So, part 1 is cisplatin into my abdomen, and taxol into an IV (the hardest week), part 2 is taxol into my abdomen (an easier treatment), then week 3 with no chemo.
The really encouraging thing that happened last week is my CA-125 numbers have dropped significantly!!! Before surgery- 1,500; after surgery- 185; and after the first round of chemo- 14. That's an awfully small looking number compared to 1,500!!! But apparently the numbers can fluctuate during treatment, so I'm going to try hard to not obsess about them.
But, (yay!)
9/10- Round 2, part 2
9/24- Round 3, part 1
10/1- Round 3, part 2
10/15- Round 4, part 1
10/22- Round 4, part 2
11/5- Round 5, part 1
11/12- Round 5, part 2
11/26- Round 6, part 1
12/3- Round 6, part 2
(all Wednesdays)
So, part 1 is cisplatin into my abdomen, and taxol into an IV (the hardest week), part 2 is taxol into my abdomen (an easier treatment), then week 3 with no chemo.
The really encouraging thing that happened last week is my CA-125 numbers have dropped significantly!!! Before surgery- 1,500; after surgery- 185; and after the first round of chemo- 14. That's an awfully small looking number compared to 1,500!!! But apparently the numbers can fluctuate during treatment, so I'm going to try hard to not obsess about them.
But, (yay!)
Thursday, September 4, 2008
I'm leaking
Today I went for part 1 of round 2. It was a long day, but everything went well. I had lots of nice distractions, including a good, chatty visit with Serafine and a package from my sister Julie with a neon pink wig inside! But when I got home, I started leaking from the injection area where the chemo was put in through my abdominal port. The stuff dripping out is most likely the heparin, which is used to prevent clogging, and/or the saline solution used to flush the tubing out. So I called the gyn oncology after hours #, and after consulting with one of my doctors let me know that several people have been having the same thing happen, and they typically stop leaking by the morning. I'm finding that it drips out less when I remain horizontal.
It is very upsetting to have these weird things happening to my body.
It is very upsetting to have these weird things happening to my body.
Monday, September 1, 2008
Unfortunately
I asked Sarah, "Does this hat look ok?" and she answered, "It kind of makes you look like a muffin!"
Friday, August 29, 2008
Fortunately
I asked my fortune cookie, will I beat this cancer? And my fortune was:
"You will have a long and healthy life."
"You will have a long and healthy life."
Thursday, August 28, 2008
hair
Also yesterday my scalp started feeling very bizarre. Like when you wake up with a spot feeling as if it's bent the wrong way, except my entire head felt that way. And it's definitely starting to come out. I've had super short hair for 10 years, and the thought of being bald doesn't bother me. But when I'm holding a clump of hair after running my hand across my head, it is unnerving and makes me feel like I'm falling apart. On the other hand, it is visual proof that the clear liquid dripping from the IV bag is, in fact, something that is eliminating cancer cells. In the afternoon I met with Dawn in the city to learn about meditation and guided imagery (and snack on chocolate and green juice!) While I was there I went to an incredible hat shop called Alternative Design Studio Hats
and bought 3 hats.
and bought 3 hats.
Dear John
Yesterday I sent a message through the Black Rock City Post Office to be delivered to the Temple:
"To my ovarian cancer cells that chemotherapy will kill during the next 5 months- You are not welcome here. It was just not meant to be..."
From the Jackrabbit Speaks:
The BRC Post Office (Extreme Version) at Tokyo Plaza is initiating the Email-to-Playa Art Program this year. Have your default-world situated loved-ones follow the instructions on:
http://www.brcpostoffice.com/arttoplaya
and they will be able to send a short message transformed to art delivered to their favorite Burning Man participant. The intended BRC citizen will receive it as art (our choice as to which artistic medium!) delivered in person. If we fail to track down the citizen in question, one of our grumpy and/or sexy postal employees will have the art-transformed message at the Tokyo Post Office.
"To my ovarian cancer cells that chemotherapy will kill during the next 5 months- You are not welcome here. It was just not meant to be..."
From the Jackrabbit Speaks:
The BRC Post Office (Extreme Version) at Tokyo Plaza is initiating the Email-to-Playa Art Program this year. Have your default-world situated loved-ones follow the instructions on:
http://www.brcpostoffice.com/arttoplaya
and they will be able to send a short message transformed to art delivered to their favorite Burning Man participant. The intended BRC citizen will receive it as art (our choice as to which artistic medium!) delivered in person. If we fail to track down the citizen in question, one of our grumpy and/or sexy postal employees will have the art-transformed message at the Tokyo Post Office.
Monday, August 25, 2008
True Nature Reiki
http://www.truenaturereiki.com/
Rene has been wonderful, even coming to work on me in the hospital! Here's a link to her practice, True Nature Reiki.
Sunday, August 24, 2008
A Good Week
Friday wasn't so bad after all. That's a huge relief! My diaphragm calmed down and I just had a teeny bit of nausea and just felt generally tired and unsettled. And bloated. Yesterday was better and today I felt downright good!
I spent a good part of the day reading the blog of a friend's experience dealing with breast cancer. I've read about 5 months worth, think I'll continue it tomorrow. Now I'm sitting here drooling after a visit from Deborah, who gave me the loveliest and longest foot massage ever!
I spent a good part of the day reading the blog of a friend's experience dealing with breast cancer. I've read about 5 months worth, think I'll continue it tomorrow. Now I'm sitting here drooling after a visit from Deborah, who gave me the loveliest and longest foot massage ever!
Thursday, August 21, 2008
Bloated idiot
I have learned that it's true that it takes a few days before the full effects of chemo hit you. Wed. I went in for the treatment, Thurs. I still felt pretty good (which was nice since it was my birthday. We had an impromptu dinner with some friends, a lovely sunset, a humongous chocolate cake and a nummy banana cream pie...) then Fri. hit and I felt horrible. I'm writing this almost a week later and I have successfully blocked most of it out. But I do remember at one point wondering if I really would be able to handle this. The weekend was shot, except for a nice little reality check from Rene, who helped me calm down with some reiki.
Finally felt better on Mon. I went to a yoga session for cancer patients (I really hate how that sounds!) and it was amazing. We did a lot of breathing and guided imagery and a few simple poses and stretching. I felt so nurtured. And on Tues. I went for acupuncture. I'm finally starting to do some of the things that can really help me, instead of wallowing in self-pity.
Wed. went in for part 2 of my first round of chemo. This was supposed to be a short day, but we were still there from 8:30 until 4. This time only Taxol, abdominally, and only about 1/3 dose. Last night I couldn't sleep at all, my heart was pounding and I couldn't take deep breaths because my diaphragm is super sore, probably from the huge bags of fluids getting pumped into my abdomen. I am a bloated idiot! Finally slept around 5 am, for about 3 hours. Today was a good day, but now I can feel it starting to set in. Tomorrow will be fun.
Ok, let's see who gets the bloated idiot reference!
Finally felt better on Mon. I went to a yoga session for cancer patients (I really hate how that sounds!) and it was amazing. We did a lot of breathing and guided imagery and a few simple poses and stretching. I felt so nurtured. And on Tues. I went for acupuncture. I'm finally starting to do some of the things that can really help me, instead of wallowing in self-pity.
Wed. went in for part 2 of my first round of chemo. This was supposed to be a short day, but we were still there from 8:30 until 4. This time only Taxol, abdominally, and only about 1/3 dose. Last night I couldn't sleep at all, my heart was pounding and I couldn't take deep breaths because my diaphragm is super sore, probably from the huge bags of fluids getting pumped into my abdomen. I am a bloated idiot! Finally slept around 5 am, for about 3 hours. Today was a good day, but now I can feel it starting to set in. Tomorrow will be fun.
Ok, let's see who gets the bloated idiot reference!
Wednesday, August 13, 2008
No Prob!
This first day doing chemo wasn't too bad at all! Here was my day:
7:30- Lab for blood work
8:00- Appt. with doctor to check on my new port. After the placement, he had spoken with Ethan on the phone that they had seen a few spots of cancer about the size of rice grains. So he was able to tell us more- they were actually very, very small, very common, and will be obliterated by the chemo.
9:00- Up to the infusion clinic. The nurse was super nice (and has a dog named Abbie-bell.) It took a while to get in and settled, then they put in the IV and started pumping in anti-nausea and anti-allergy medicine. Then started the Taxol. It was just a plastic bag filled clear fluid hooked onto the IV stand. Didn't feel anything. Then had a bunch of hours chatting with Serafine, Ethan and Sarah, watching a smidge of the Olympics, eating a quesadilla and getting the lay of the land. Next came the Platinol, into my intraperitoneal port (IP for short). Another innocuous bag on the IV stand. Again, didn't feel anything. Really the only thing I was feeling at this point was a bit of wooziness from the anti-allergy stuff. Then a visit from Lego Kevin, an attempt at reading, some snoozing and watched a few episodes of Lost on the laptop (thanks Molitov!)
7:30 pm- Check out
Tuesday, August 12, 2008
Monday, August 4, 2008
What do I want????
Really, I don't know. It's very confusing. I want to be taken care of and to be left alone at the same time. I want people to feel sorry for me, I want to feel sorry for myself. No, actually, I'm fine. Go away. I told you it's confusing!
I was talking to Allison about this. I told her that this is hard for me because I'm a back of the audience kind of person and all of a sudden I'm on the stage with a big spotlight on me.
One thing I want that I can actually verbalize is that I want to make it to the end of the 6 rounds of chemo. And I might want to quit before then. I've heard a good amount of people don't make it to the end. So I need all of you to be my cheerleaders! Encouragement, threats, bribes... whatever it takes!
(This is what happens when I try writing a post while watching the movie, The Tracey Fragments...)
I was talking to Allison about this. I told her that this is hard for me because I'm a back of the audience kind of person and all of a sudden I'm on the stage with a big spotlight on me.
One thing I want that I can actually verbalize is that I want to make it to the end of the 6 rounds of chemo. And I might want to quit before then. I've heard a good amount of people don't make it to the end. So I need all of you to be my cheerleaders! Encouragement, threats, bribes... whatever it takes!
(This is what happens when I try writing a post while watching the movie, The Tracey Fragments...)
Phospho-soda
If anyone ever has to drink this, I truly feel sorry for you.
I have another 5:30 a.m. hospital appointment. This time for a laparoscopy to put the port in my abdomen. The really good thing is that while they're in there they'll look around and if any tumors have grown since the last surgery, they can be removed. So I'll be starting chemo with a clean slate.
And it looks like chemotherapy will start on Aug. 13th. So it looks like I'll have a few days of feeling good before then. Fun in the city?
I have another 5:30 a.m. hospital appointment. This time for a laparoscopy to put the port in my abdomen. The really good thing is that while they're in there they'll look around and if any tumors have grown since the last surgery, they can be removed. So I'll be starting chemo with a clean slate.
And it looks like chemotherapy will start on Aug. 13th. So it looks like I'll have a few days of feeling good before then. Fun in the city?
Wednesday, July 30, 2008
Jiggety Jig
We're home!
And I have never had such an amazing homecoming! My sister, Andrea, had popped over earlier today to surprise us with a clean house, food in the fridge, flowers and a card! We walked in and the first thing I saw was the flowers, along with some special soup packets from Switzerland (Fladli- pancake soup we grew up with.) Then I noticed fresh bananas in the fruit bowl, and the surprises kept on coming! The dishwasher had been unloaded, kitchen looks better than it has in a long time, and food in the fridge- new milk, homemade apricot jam, stuff for dinner, my favorite english muffins for breakfast and homemade brownies! And the living room had been organized! This was so unexpected and helpful, it really made our day, and was such a nice ending to our trip.
An aside- I'm counting 5 exclamation points in the above post. Sarah has taken on the job of being my blogging coach. One of the first things she suggested was to limit the amount of exclamation points and to use them only when necessary. Well, this time I just couldn't help myself!
Saturday, July 19, 2008
Kailua
We've spent the last few days in Kailua on the windward side of Oahu visiting Ethan's brother, Daniel. The entire time we've been here there has been a 2" baby gekko hanging out in the house on the corner window screen. It's been very mellow so far, which is just what I need. We've had macadamia nut pancakes at Boots and Kimo, we've hit the thriftstore, taken naps, we had a sushi picnic lunch at He'iea Park overlooking Kaneohe Bay, we went up to the Pali Lookout, with super strong wind gusts blowing us over, had dinner at People's Cafe in Honolulu (including Poi) and breakfast at the Pancake House in Kaneohe followed by garage sailing and smoothies at Lanikai Juice. We had so-so luck at the garage sales. I found a Sounds of the '70's- Punk and New Wave CD and got a free Danish magazine I'll bring to Bodil. Sarah found a necklace for 25 cents.
Thursday, July 17, 2008
Hawaii or Bust
We're off! Being in a house overlooking the ocean with a bunch of friends is just what I need! We'll be with Maria, Cicada, Z'ev, Matt, Larnie, Bodil, Liv, Pat and the birthday boy, Keith. The MD said it was OK to be in the ocean a little, but I should avoid the pool. Hmmm. I guess that's better than nothing.
We've been planning this trip to celebrate Keith's 55th birthday for about a year. It's very strange that it landed in the 2 week window that was available between the follow up appt. with the MD and the time they want me to start chemotherapy. The EXACT time, to the day.
Wednesday, July 16, 2008
Ooph!
Went to the 2 week post surgery MD visit today, along with my crack team leader, Ethan. We each had a list of questions a mile long, and I have to say they were very patient with us and answered every one.
Last week we got a copy of the pathology report which answered some of the big questions. Top of the list, was there cancer in the lymph nodes that were enlarged? Big sigh of relief, no there wasn't. Also, they didn't find cancer cells in the "washings" (I think that's abdominal fluid) and the tumor on the omentum was contained to a marble size lump and hadn't spread. Then there were some other areas where it had spread, but the surgeon said they had anticipated that some of the biopsies would show this and since the cells aren't visible as tumors, they'll be taken care of by the chemo. A few things on the report struck me as odd- one of the procedures I had was called an oophorectomy, and even odder- they biopsied my cul-de-sac!
The other thing we worked out at this meeting was the next step. When we get back from Hawaii (that will be another post) I will have a minor surgery to implant a port (yes, a PORT) into my abdomen, probably Aug. 5th, then chemotherapy will start after that. yippee.
Sunday, July 13, 2008
Will somebody please explain to me what just happened?
So, Ethan suggested I start a blog. My first reaction was panic, but then realized that it would be a good way to pass along news to you, and might even be beneficial for me.
I am sitting here at home, with a 4" incision on my belly, still reeling from the surgeon's words after the operation telling me I have ovarian cancer. It happened so fast. On June 16th I went to our family physician asking her to look at a lump I noticed on my left side. She ordered an ultrasound which happened a week and a half later, and I got the results from her within a few days- large cysts on both ovaries. One the size of an orange, the other a grapefruit. She also let me know they weren't the usual fluid filled cysts, they had solid parts as well. She made me an appointment that same day with a doctor specializing in minimally invasive surgery to figure out the next step, and also had me go in for a CT scan. The specialist did another ultrasound exam and decided to make an appointment for me the following Monday the 30th with an oncologist, he said "just in case" it was cancer they wanted to be prepared for any scenario. So at this point it was scary, but still the chance of cancer seemed very remote. My friend Allison and her son accompanied me to this appointment, as Ethan was in L.A. for the memorial of a good friend. Thank goodness they were with me, I started panicking a bit when I saw the harpist playing in the hallway of the medical center! The oncologist I met with let me know that he didn't think laparoscopy (minimally invasive) surgery was the way to go. The CT scan results showed enlarged lymph nodes and some other red flags. He suggested the laparotomy should be scheduled for Thurs. July 3rd, just 3 days away. After much debate we decided to trust the oncologist's call. The surgery went well and I stayed in the hospital for 3 nights, then went home with Nurse Ethan. While I was in the hospital the surgeon visited to let me know it was indeed ovarian cancer and it had spread to a few other places within my abdomen. They had removed my uterus, fallopian tubes, ovaries, omentum, appendix and a few lymph nodes.
Nutshell version:
-June 16th: Showed family MD lump in pelvic area
-June 25th: Ultrasound
-June 27th: Results from ultrasound: large suspicious looking cysts on both ovaries. Appt. with specialist. CT scan
-June 30: Appt. with oncologist
-July 3: Surgery
-July 6: Home
Subscribe to:
Posts (Atom)