I've been tired today. I think it's due to residual effects of Herceptin and trying to fight off a cold.
I also had a nice walk yesterday morning in the forest, in a drizzle, with Cat and her dogs. It wasn't a long walk, but since I'm still recovering a bit from Herceptin, maybe it tired me out. I woke up feeling great yesterday, so didn't think anything about whether or not it might tire me out some. I don't regret the walk, though! It's nice to get out and get some fresh air!
My theory with regard to being tired due to Herceptin is this: for a few days last week, my body was trying to flush the Herceptin out of my body. Now, it's trying to flush the dead cancer cells out of my body. That takes work.
Also, it seems that the swollen lymph nodes are still shrinking a bit. It's really hard to tell. Sometimes, it feels the same and sometimes, it feels like it might be smaller. They may have moved around a little bit. They've been tender the last couple of days and that may be due to my body trying to clear out the cancer and/or lifting and holding Baby Gooey.
I've had a slight sore throat, too, and took Airborne today so that it doesn't develop into more of a cold. My nose has been a bit runny today.
Other than that, dad and Scotty rearranged Eddie's room and it feels a lot bigger. I got pictures and other things organized there. Then, I was able to move a few more things out of my room so it's starting to feel less cluttered. I posted about 20 or so items on Craigslist on Thursday and already we've sold about 6 of them and two more people are stopping by tomorrow for a couple of things. So, the garage is feeling less cluttered and we have a little spending money. I paid some bills and also did some preparation for filing my taxes, like calculating out of pocket expenses for medical bills.
All in all, a productive day, even if I spent most of it on the couch! : )
Sunday, January 31, 2010
I've been tired today. I think it's due to residual effects of Herceptin and trying to fight off a cold.
Thursday, January 28, 2010
The clinical coordinator of the immunotherapy trial at UW has reviewed my records and believes that I am, indeed, eligible. But before they can make a final determination, they need a recent echocardiogram or MUGA, so I'll call Dr. K's office and have him order it for me. I need another one anyway, since I've started Herceptin.
I really like the idea of doing this immunotherapy - using your own cells to fight the cancer sounds about right to me. I'll keep you posted on what happens with this!
In the meantime, still doing well, although tired today because I didn't sleep well last night. I'm taking it easy!
Oh yeah, I ended up having lunch with Phyllis Lee today - she's the retired former Director of Multicultural Affairs (now the Office of Community & Diversity) for whom the award I received was named after. She was very gracious and treated me to lunch! Thank you, Phyllis!
I had my blood drawn the other day when I received Herceptin - but my veins didn't want to give up a lot of blood, so they actually didn't do the CEA this month. However, they did do the CA15-3. Anything 33 and under is considered normal. This month? 33.8! It went down a few points from 37.5! I'm trying not to read too much into it as the numbers can fluctuate a few points each time. On the other hand, a downward trend is a good thing! ; )
Here's the CA15-3.
Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL
July 2 2009 - 22.1 U/mL
Aug 3 2009 - 29.7 U/mL
August 31 2009 - 31.9 U/mL
Oct 3 2009 - 38.7 U/mL
Nov 2 2009 - 36.4 U/mL
Nov 30 2009 - 38.5 U/mL
Dec 28 2009 - 37.5 U/mL
Jan 25 2010 - 33.8 U/mL
I'll post the CEA numbers again, even though it wasn't measured this time, just for consistency's sake. Anything 3.8 and under is "normal".
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
Hopefully, they test the CEA when they draw blood in six weeks. I'll keep you posted!
Wednesday, January 27, 2010
So, today was a really good day. I had a great night's sleep last night and felt fairly awake until early evening. Sometimes, I feel like I might have a headache (a side effect), but it doesn't last for long.
Another side effect that I may have had (other than fatigue) was lower back pain, caused by the kidneys trying to process this foreign chemical in your body. I certainly had lower back pain on Monday night and through Tuesday. But it was hard to tell if it was because of Herceptin or because of all the sitting I did on airplanes, in a conference room on Thurs/Fri and in the car on Sunday. But it was gone by this morning, so perhaps it was the good night's sleep, plus I tried to drink a lot of fluids to help flush out the Herceptin.
And, I swear, those swollen lymph nodes already feel a little less swollen. They are certainly less tender and the shooting pain I had last week isn't there. My dad said that maybe something was slightly infected or irritated. Who knows? But I choose to believe that Herceptin is doing the trick!
Tuesday, January 26, 2010
OSU News and Communication Services had this little news bit about the Phylis Lee Award:
Phyllis Lee Award
Also, no major side effects so far - just tired. Taking it easy. Watching American Idol. Maybe it's wishful thinking, but it seems like the swollen lymph nodes under my left arm pit are already a little less swollen. I started taking Tylenol for the pinched nerve (or whatever caused the shooting pain) for a few days last week, but I haven't taken one since Sunday night . . . only one tweak since then. I'll keep you posted!
Did a bit of work today - I'm starting my little study of cancer blogs. I plan to find out what breast cancer patients have to say regarding their care and also what strategies they may use to seek support.
Otherwise, no other news. Happy Tuesday!
Monday, January 25, 2010
I had my first dose of Herceptin today. So far, I'm not experiencing any side effects except that I'm more tired than usual.
It was a long afternoon, though. I got to Ambulatory Infusion about 1pm, then there was some paperwork to fill out because it was a new medicine; then they had to make sure that they had the correct orders because pharmacy mixed the drug together. The Herceptin dose is administered over 90 minutes. By the time it was finished, I'd been there about 2 1/2 hours.
Then, they realized that my dose of zometa was calculated to be given every four weeks, but I'm now getting it every three weeks, so they had to decrease the dose. But it turns out Dr. K hadn't given them the orders so we had to wait for them. Dr. K's office thought they had faxed them. So, that was about a 45 minute wait.
Then, 30 minutes for the zometa. Finally, we did a blood draw, in order to have baseline data (before and after Herceptin). But they had to stick me three more times before they found a vein that would give up enough blood.
All told, the visit was 4 1/2 hours. I didn't get to see Eddie after school. I'll see him in the morning, though.
Patience is key in the cancer world.
I'm just glad I'm not experiencing any side effects worse than fatigue. : )
Sunday, January 24, 2010
In the last month or so, I've found myself not really wanting to work.
Don't get me wrong, I love my job. I feel very fortunate to have a job and to be able to (mostly) do what I want to do when I want to do it. I also can't afford to quit my job. I have too many bills - much of my debt, though, piled up when I was on sabbatical two years ago and I used my home equity line of credit to make up the difference. I didn't want to have to worry about finances since I was dealing with the news of a recurrence and then metastases.
Granted, in the last month or so, my life has been unsettled: I wasn't sure what my new treatment would be and then my family moved into my house. Things are finally settling down there, but I find that I can't really get my mind on my job.
Part of the reason for this is that my mind is becoming more and more focused on healing and reading about things of a more spiritual matter. I've been learning more about meditation, qigong and Eastern philosophy.
I've also been reconnecting with people from high school - which has been healing for me in a lot of ways. (Thanks to Facebook!)
I am still interested in my research projects and I hope to finish with a couple of them by spring break. I need to start working on them though!
But it seems that life is steering me in a different direction - a more spiritual direction because I have a feeling that it will be crucial to my healing. I find myself trying to figure out ways to buy myself out of at least half of my classes next year.
So, my goal for the next year or so is to pay down my debt as much as possible.
And, if anyone has any ideas for a writing fellowship of some sort, I'm all ears!
Tomorrow, I start a new "targeted therapy" for my Her-2 positive cancer: Herceptin. It's been around for 10+ years now, I think, and has been found to be really effective. I've been on Tykerb ("son of Herceptin") for almost two years. I don't expect to have many side effects. But there's always a possibility that I will.
I was planning to start a new meditation class tomorrow afternoon, which would take place after the appointment, but to be on the safe side, I thought I should just stay home afterwards and rest.
Amazingly, I'm not feeling too anxious about this at all. I am expecting to waltz in there like I have been while taking zometa (a drug that protects my bones from cancer invading it) and waltz out just like I usually do. That may be somewhat naive of me. But I choose to believe that I'll be just fine. So many patients have no side effects, although they say you may be feel "flu-like" symptoms the first time. I guess I feel since I've been taking Tykerb, my body is already kinda used to this kind of substance.
I also attribute my lack of worry or anxiety to learning more about meditation and mindfulness (i.e., living in the moment) in recent months.
We'll see how it all goes - I'll make sure I report on how I'm doing afterwards!
Happy Monday, everyone!
Saturday, January 23, 2010
I'm sorry I haven't posted the past few days - I traveled to Victoria, BC, on Wednesday (it took me a flippin' 14 hours!!! because of a mechnical problem on a plane) and didn't get there until 11pm. I was routed through Vancouver BC and while waiting for my flight to Victoria, I decided to have a beer at a pub there. While I was on Facebook, I heard a screech - several screeches really - and then there was a rat running across the floor! It went from one side of the bar (on one concourse) and ran to the other side of the bar (to the concourse on that side) Holy cow! At an airport! I took my feet off the floor and put them up on the chair across from me, just in case. Then, about ten minutes later, the rat (same one, presumably) ran back across to where he or she came! That was my excitement.
I spent Thurs and Fri in meetings - about 12 separate meetings with individual people each day. I was part of a three-person external review team that was evaluating a master's program in Environmental Education and Communication.
The program itself is unique - I don't know that there are any other specifically Environmental Education programs anywhere else in North America.
Anyway, I learned a lot and then took a cab about 4:15 to the airport, then waited for the flight to Seattle, had a 3+ hour layover, then a flight to Eugene. We landed at 11:45pm and then I got home by about 12:45am. Asleep by about 1:15pm and up at 8:30am this morning.
I have an afternoon qigong workshop today. Nothing really going on tomorrow, but Monday afternoon, I'll be part of a meditation class. Before the class, I will start Herceptin and will take that along with zometa every three weeks and then take daily Tykerb pills.
The pain under my armpit - which is episodic and happens only when I use or stretch out my arm - is probably due to a pinched nerve from the swollen lymph nodes. I've been taking Tylenol fairly regularly which seems to help.
Anyway, the sun is shining and things are settling in at home. Time to get going! Enjoy your week-ends everyone!
Tuesday, January 19, 2010
Here's a picture of me with the plaque for the Phyllis S. Lee Award, standing next to the President of OSU, Ed Ray (he's the guy in the suit). The other two are a student (Hunnan Pope) and Juan Trujillo from Foreign Languages & Literatures, who shared the Frances Dancy Hooks Award.
Phyllis Lee was the first director of Multicultural Affairs (now called the office of Community and Diversity). I took a class from Phyllis back in 1992 (I think) when I was a master's degree student. She and Kathleen Saadat taught a class entitled Minority Groups and Issues. While the whole class was a good one, one exercise in particular sticks out in my mind. Phyllis and Kathleen had us put labels on our backs of various different minority people and we were to walk up to each student and talk to him or her as if they were that label. My label, it turned out, was "Evangelical Christian female". Other students made comments about Tammy Faye Baker and makeup and mascara! I was so afraid of saying anything stereotypical that when I came across a student with the label "African American female", I didn't say anything at all. I was tongue-tied. That exercise taught me more than anything that in order to treat everyone equally, I should have said to that person the same thing I said to someone whose label was Caucasian female or Native American female.
Thank you, Phyllis, for that lesson!
(For more on the Phyllis S. Lee Award, see http://oregonstate.edu/affact/phyllis-s-lee-award. See also this short article on the Life@OSU website. And, the OSU student newspaper, the Barometer had a short mention of the award.)
Sunday, January 17, 2010
Actually, there isn't much to report. Just continuing to clean and organize in the house. I finished filing away my papers; I cleaned out about four years of Eddie's school and art work and only kept the best; organized the storage under his loft bed more; figured out what pictures to hang on my walls and which on Eddie's, etc.
Yesterday, I had more pain under that left armpit, where the swollen lymph nodes are. Any time I raised my arm up or out, it seems like it would pull on whatever tissue fibers are there and I'd feel a sharp pain that went up the back of my arm a bit. That pain now seems worse than what's going on the right rib area. I also seem to have a bit more lower back pain - and whether that's due to having to sleep on my back more or this new chair that I sit in in the living room or whether it's all the slouching on the floor as I go through papers . .. probably a combination of all three.
I had a good night's sleep last night, though, and things don't ache as much today as yesterday. I'm still not sure what my plan is for the day - need to finish hanging a couple of pictures and lord knows I should work on my fellowship application. I really want to go look around at furniture stores to come up with a solution for Eddie's loft bed. We'll see what I come up with!
I'll pick up Eddie later today. I wanted him to stay with me tonight because I will be accepting the Phyllis Lee Award tomorrow at OSU, during the Martin Luther King Jr. Peace Breakfast. I'll write some more about it tomorrow. I just wanted Eddie to see me receiving this award - my folks and my brother will also attend. Happy Sunday everyone!
Thursday, January 14, 2010
First, I should say that there's a chance I'm eligible for a Phase I/II clinical trial which is studying a Her-2 vaccine. The protocol would mean giving me a vaccine for once/week for three weeks, then they'd harvest some of my T-cells, which they'd grow in the lab until they had "millions" of them, which they'd then reinfuse into my body over three treatments. The vaccine would go to the tumor/cancer cells and make them look more like a foreign invader and my t-cells could go to town on them.
But, I'd only be eligible for the trial if my next treatment only includes Tykerb/Herceptin.
Dr. K said that Tykerb/Herceptin is one of my options. The other option is Herceptin/Gemzar. A third option is Abraxane/Avastin. The latter has serious side effects. He would prefer I go on Herceptin/Gemzar as it has a better track record - Gemzar is a traditional chemo-type drug whereas Tykerb attacks similar cells as Herceptin, so Gemzar gives us more variety as opposed to Tykerb treating a similar characteristic of my disease.
However, Dr. K did say that my tumors are not life threatening and if I wanted to just try Herceptin with Tykerb to see how I responded, he'd be okay with that.
This would allow me to try the immune therapy, which to me makes a lot of sense. From what I can tell, there aren't many side effects. Dr. K said that they have tested these immunotherapy on just a few patients. He said that a couple of patients have had "amazing" results, but it hasn't helped some patients.
So, in the end, what's my plan?
I'm going to start with Tykerb/Herceptin, in the off-chance that I'm eligible for the study. Hopefully within about a week and a half, I will know one way or another.
If they feel that I'm not eligible, then I agreed to do the Herceptin/Gemzar route because I do believe Gemzar/Herceptin gives me more tools to fight the disease than Tykerb/Herceptin.
I'm getting tired of this egg under my left arm pit. It's becoming more tender and the tissue is becoming tighter. So, the sooner we can do something about it, the better I'll feel.
Tuesday, January 12, 2010
Before the holidays, Eddie wrote a few creative writing stories. The stories just made it home, though (they get lost in Eddie's desk). There are three of them:
"My Trip to the North Pole" by Eddie (teacher's grade - 100/100)
It was 9:30pm on a Friday night. I was playing N64 Sherbet Land on Mario Kart Wii. I fell asleep during the 3rd and final lap. I had a dream that I was in the North Pole. BTW, if you were wondering who I was playing as, I was playing as Donkey Kong in a large bike called the Phantom. Anyways, I walked with my mom because we felt like seeing what there was to see. Then, after we walked a mile, we got hungry. We brought cheese zombies and chicken nuggets from Burker King. BTW, the cheese zombies weren't from Burger King. A mile later, we got to Santa Claus's house/factory. We walked to Santa. I told Santa what I wanted for Christmas. "I want a Nintendo DS Lite, Mario Kart DS, and New Super Mario Bros. DS for Christmas," I said. "I'll see if I have those," said Santa. "Bye, Santa," I said. "Goodbye, Eddie," said Santa. then my mom and I explored some more. Then I woke up. The End.
"The Super Duper Mario" by Eddie (teacher's grade - 100/100)
"Fill the world with songs of Christmas," I sang. "I feel like making something," I said. I made a Mario plush. It wasn't just an ordinary plush. It talked. Yes, it actually talked. I made a video on You-tube about the plush. I got a ton of comments, saying, "I want it!" I accepted them. I sold over 1,000,000 plushes. I sold it for $9.99 each. People thought it was a bargain. BTW, it was like a real person. It didn't just say whatever the owner said. It also did your homework, did the chores, etc. etc. Anyways, I sold all those plushes in one day! The next day, I sold over 2,000,000 plushes. I sold them for $9.99 each. I thought I was rich. I mean, I could buy everything I wanted I was so rich. BTW, on Christmas morning, I got Press Your Luck for Wii, and a Nintendo DS with Mario Kart DS. The next day, I sold over 5,000,000 plushes. I was worn out. The End."
"A Christmas poem" by Eddie Kingston (teacher's grade - 100/100)
Christmas day. Christmas night. Christmas is a glorious sight. So awesome, so cool, so old, it makes me feel really bold. Christmas is the best, the presents are like a treasure chest. It's like you're hoping for gold. Hopefully the presents you give or get are not that old. Maybe it's like 15 years. Christmas is full of holiday cheers. Christmas is when you celebrate Jesus's birth. Yes, come on, it won't hurt. Have you been good or bad? If you've been bad, Santa will give you something that'll make you sad. It's coal that Santa will give you if you've been bad. The End.
I think I have a budding writer on my hands!
Monday, January 11, 2010
As I noted a few months ago, the drug repository bill passed here in Oregon. The Oregon State Board of Pharmacy is currently in the rule-making phase and I met with their director. She wanted to know if I had any suggestions or wanted to give her any feedback about any rules that might be written. She also explained all the research she's done in order to implement this rule.
There are over 30 states that have a drug repository laws on the books. Only 14 are operational, but of those, only 4 states really have a repository in which drugs are donated and prescription drugs are dispensed. The best of these is in Iowa and the only reason why it works as well as it does is that it gets state funding to the tune of $1 million a year.
The upshot is that states must follow federal law with regard to prescription drugs. Under federal law, once a prescription drug leaves a licensed pharmacy or other licensed medical facility, the drug is considered "adulterated" and it is against federal law to dispense adulterated drugs. In other words, once a person has received a drug, even if they have not opened the package (even if it is bubble-wrapped), it is considered adulterated and therefore it is illegal to give to another patient.
She (Paige Clark) talked to pharmacy boards in the four states and all note that the majority (98% or something) of the donated drugs in their repositories come from nursing homes or other care facilities (licensed medical facility). And, they also noted that they usually don't even accept meds from individuals even if their rules allow for it.
Well, crap. I'd hoped I could donate drugs that I was prescribed but didn't use. It's time to think outside the box here . . . if you think of what we can do, I'm all ears! One thing is to try to change the federal law with regard to the definition of "adulterated prescription drugs". Probably a long shot . . .
In the meantime, this law does give a mechanism through which nursing homes and other medical facilities like it can donate their unused medications and it creates a repository that can dispense these meds to uninsured or underinsured individuals.
I guess that there's an organization in Portland (called Inside Out) that has managed to get pharmaceutical companies to donate medications to their facility that they then make available to indigent populations free of charge. I wondered if we can use a similar mechanism so that the same companies could donate medications to a drug repository throughout the state.
Paige also wanted to know that with regard to the "storage" issue (after a patient receives a drug, they aren't sure how it's stored - remember some meds must be refrigerated, etc.), if it would be a problem for patients receiving drugs to undergo a brief consultation about the proper way to store a drug. In other words, would it be too onerous for me, as a patient, to have the pharmacist give me clear instructions about how to store the medication. I told her that I wouldn't mind and I don't think most patients would mind at all.
So, that would solve the storage problem. But it still leaves the problem of adulterated drugs under federal law.
Another idea would be to create an informal matching service in which patients with unused prescription drugs could be paired with patients needing those drugs ... and while this may be happening informally anyway, it would be nice to make it a more formal kind of service. Unfortunately, I think there are laws against this . . .
Okay, I think that sums up the conversation. A bit frustrating . . . but it seems like something good will come of it at some level.
I also wondered if there was a way to match up patients with unused prescription drugs with patients who need them. A kind of "match.com" for patients. I'm sure it's illegal somehow, but wouldn't that be great if we could work that out safely?
We had a busy week-end with my folks move-in. I was fortunate and didn't do any heavy lifting (I think I have a healing fractured rib - 18 months ago, my CT scan only noted three ribs with healed fractures; my latest CT scan showed FOUR healed ribs). However, I did reorganize and condense my bathroom, reorganized the contents of the kitchen cabinets. I did a little more organization in Eddie's room. I took care of a friend's kids for a bit. Then, the usual running of errands and helping Eddie with homework.
My brother Scotty was all moved in by Thurs night. Mom and dad got the rest of their big stuff moved and are busy trying to reorganize and make room for everything in their room. My garage is packed! We need to organize it a bit more and I will try to sell stuff on Craigslist.
In the meantime, I have to put a few more files away in my room and then find a good stair or ladder system for Eddie's loft bed. Then, we need to figure out what pictures to hang up on walls and what knick knacks to keep out and what to pack away.
I'll stop there. I can't think too far ahead or I'll get overwhelmed! Happy Monday!
Sunday, January 10, 2010
The last few days, I noticed a few people posting a color as their Facebook status. I didn't realize until I received a fb email that it was only women. The idea was that women were to post the color of the bras they were wearing at that moment to raise awareness for breast cancer - and to not tell those male-types what it was all about. (Sorry, ladies, I let the cat out of the bag!)
Someone I went to high school with, P. (one of those male types), started a chain of comments that I got a chuckle out of, so I asked for and he gave me permission to post it here on my blog.
P. (male) said, "O.K........... What is all this nonsense everyone is posting with just one word describing a color???? Can anyone explain this to me????"
A. (female) replied, "Women are posting their bra color...to raise awareness for breast cancer"
P. (male) responded, "is it the color of the bra they are currently wearing??? What if you're braless at the time of posting??"
T. (male) responded, "To raise awareness for men wearing underwear, we are posting our colors. Let me guess on you Phil, drawer full of tighty whiteys and your comando?"
A. (female) replied, "I have seen a few women post..none.... and yes its suppose to be the color at the time u are wearing......."
J. (male) said, "Speaking for us guys we would like to request that tomorrow you all post your bra size instead."
A. (female) replied, "Oh dear god....that would not be good....not for me anyways....."
J. (female) said, "guys don't get a say!! lol"
P. (male) replied, "As far as Commando Tony, HOORAAH!!!! They don't make cups that big... And I agree with Jim, and pictures should be included for proof!!!! Especially you Amy!! LOL"
K. (female) responded, "OMG...I will now go poke out my mind's eye......."
Ka. (female) said, "if guys have moobs, they seriously need to wear a bra, hahahah"
A. (female) replied, "U guys are too funny"
Deanna (me), said, "I collect boob jokes (I have breast cancer) - and this whole exchange made me chuckle. Can I post it to my blog? (http://deeupdates.blogspot.com). (If you want to see my boob jokes, go to my blog, then scroll down and look under "Labels" to find humor - and there they are.)"
P. (male) replied, "It's fine with me Deanna..."
C. (female) said, "36D - LOL"
Thank you, P., for letting me post this . . . I think what I found funny was the comment about guys and tighty whiteys and moobs. I like it when people turn a joke upside down!
Saturday, January 9, 2010
My doc called me with the CT scan results yesterday. It was as I expected: the three tumors in my left lung are still there and they have grown over the past six months. The largest grew from 2.0 to 2.5 cm. That's 0.5 cm in six months. Compare it to 1.0 cm in the three months before that (that same tumor went from 1.0 to 2.0 cm in three months). So, Tykerb plus Femara (or whatever combination it was) slowed the growth down, but didn't stop it.
The lymph nodes under the left arm pit have sorta grown together into a 5cm mass. That will hopefully disappear with the new treatment. Other lymph nodes around the lungs (under my breast bone, near my aorta, and in my pelvic region) have also grown.
On the right side, there are four ribs, behind the breast tissue and back, that have extra calcium deposits that are indicative of healing. We don't know how long ago they were broken or how long they've been healing. (Note, the last time I noted healing ribs in Fall 2008, there were only three ribs involved, so apparently, another rib fractured.) The little nodule I felt under my RIGHT arm pit, near the breast tissue, might be scar tissue, but my doctor feels that it's probably a little "nest" of cancer cells.
For now, all of them will be treated with whatever combination of drugs we decide on.
My doctor also gave me the contact info for the UW folks - it's the Her-2 Study Group. They may accept me as a patient - and maybe even harvest some of my t-lymphocytes to create a vaccine to help stimulate my immune system to attack the cancer. I'll contact them on Monday.
In the meantime, my folks and brother are continuing to move things into the house. My brother is all moved in. We rented a U-Haul and got most of mom and dad's big stuff. I cleaned out my files . . . and have almost put all of them away. So, things are progressing slowly but surely. Whew! Yay!
Tuesday, January 5, 2010
I decided to call my oncologist about my on-going rib pain today and luckily, there was an afternoon cancellation, so I went in to see him. He checked the tenderness in the ribs and found the nodule and then had me lie down and he checked my liver and then all the abdomen - and found another tender spot on my lower right side. When I asked what that could be, he said that it was possible that the nodule is resting on a nerve that extends down to the rib area.
In the end, we decided to get a CT scan - both to check on the status of the lung tumors as well as to see what's going on in the ribs. Before making a treatment decision, we want to see the CT scan results. But he's leaning toward me starting Herceptin and Gemzar, which is a treatment that I'd get every two weeks. I wouldn't lose my hair and I shouldn't get nauseous, but I would experience fatigue. If I start that, then I would probably get a port. I asked if the lymph nodes under the left armpit would get back to their regular size and he said that they probably would. In the event that they don't, they sometimes remove them and/or radiate them.
Other treatment options include this "super Herceptin", TDM-1 (or something like that), which is a targeted therapy that finds the cells that overexpress Her-2 and then deliver a traditional chemo that kills them. He doesn't know how to get it, though. Another option is that researchers at UW in Seattle are experimenting with a vaccine that stimulates your immune system to attack the cancer. He did say, however, that they have been experimenting with vaccinations like this for 30 years and haven't been successful.
I asked him about the radiation therapy that can direct radiation more precisely to the tumors in the lungs and his reply was that usually, that treatment was done for single tumors and that it might not be feasible for multiple ones. I don't think I'll give up that easily, though. I think it has to do with how much lung tissue is damaged by the radiation.
In the meantime, he said I can go ahead and stop taking Tykerb and Femara since they are apparently not working. Maybe he wants my body to recover from the treatments so that I can be as strong as possible prior to starting a different regimen.
I'd been planning to go to a conference in Miami in March and am now wondering if I should just wait and see how I do with this treatment. I'd hoped to use my tax refund to take Eddie to Orlando and Disney World ... but I think the only way I could do it (if I have some side effects from treatment) is if someone else joined me. Gonna think on that one for a bit longer.
Although I am back at work - and was feeling kinda ready to jump back into it - I am finding it hard to be here! Today, even though I got almost eight hours sleep (with a good 4 hour uninterrupted time in there), I'm tired! I think it's back to going to sleep around 10:30 or 11pm and getting up at 6:45am - which is way too early in my opinion!
I also have several applications to write and while they are moving forward, slowly but surely, my attention isn't really on them.
I think it's because my house is still unorganized. Eddie's room is almost completed, but I still have piles of files in my room. I can't imagine my parent's house, though. I think their place must be more discombobulated than mine.
It's a lot of work, moving is.
I am thankful, however, that I'm not teaching this term. I managed to buy myself out of both of my classes - I need to continue my interviews with Yup'ik elders and I will also be doing a little study on cancer blogs.
My right ribs continue to be tender - guess I'll call Dr. K and see about maybe getting an x-ray or something.
Remember that book I read a couple of months ago, "The Unmistakable Touch of Grace"? Well, the latest message I seem to be getting is to somehow unify or balance those energies or forces that are seemingly opposites in my life. A friend of mine said something to that effect in a message to me recently; the Deepak Chopra book I'm reading "Reinventing the Body, Resurrecting the Soul" said something about it; and then, last night, when I randomly flipped to a page in this large mandala/meditation book I got on sale at Borders, the mandala depicted and the explanation discussed both Hindu and Buddhist teachings about the "illusion of separation between opposite forces" such as male/female, matter/spirit, etc., and how they are not really separate, but exist simultaneously. Or something like that. My lesson is to learn how to incorporate or open myself up more to my spirit or soul and not just rely on the physical part of healing. Still working on how to articulate it - well, maybe I don't really need to articulate it as there are some things in this world that can't be articulated.
Whew. Philosophy in the morning. Now on to things more practical, like an article review!
Saturday, January 2, 2010
One of my fellow cancer bloggers, Liz at Literally Liz, said "We have a life to life and it doesn't involve giving in to cancer. Just all there is to it" in response to a comment I made on her first 2010 post.
Like, I said, you got to love Liz!
Today, I was going to accompany a friend to REI in Eugene to exchange something, but she decided she didn't need it, so ... we drove to the coast instead!
We drove to Newport, then north to Lincoln City, had lunch, hit the Outlet Mall, then an antique store, and then took the long way home. All in all, a good day. I hadn't been to the coast in a long time and it was fun. Unfortunately, it was high tide, so we couldn't really get out to walk at the beach we were at, but it was enough to feel the wind, smell the coast, and hear the waves.
Man, I really love the coast. I really love it.
Thanks, B., for suggesting the coast jaunt and thanks for the great company.
Friday, January 1, 2010
I have a feeling that this is going to be a very good year. I'm tired today - but it's a good tired, so I'm just taking it easy.
Yesterday, I had lunch with a friend (mmm, Indian food), then another friend picked up a new loft bed for Eddie - and found that it needed to be torn apart before transporting so it was a longer project than expected - brought it back to the house and Dad and Scott started putting it together again, then I ran an errand, then I went to a colleague's house for New Year's Even potluck dinner, then to another friend's to ring in the New Year. I had about a glass and a half of wine at my colleague's house, then several glasses of water over several hours, then a half a drink to ring in the New Year. I made it home safely by 1am and managed to sleep in until about 8:30 or so. Thank you, Rick, for transporting the loft bed and helping to take it apart!
Today, all I did was to attend a qigong/meditation class. Then helped move some things out of Eddie's current room into his new room. Scotty and Dad finished putting together Eddie's bed. Thank you!
But, the house is still a mess. I decided to get rid of these old metal filing cabinets that I've had for years so now I have files all over my bedroom floor. Yikes! I really want to go through them and throw out old papers that I no longer need.
Eddie's room has piles of things in it, too. I have a lot to clean up!
Last night, as I left my colleague's house to go to my friend's house, the right rib area became tender again. It's not really a sharp pain or an ache, but it felt bruised and hard to breath. I assume that just whatever small amount of physical activity (reaching or carrying things) triggered it. I hadn't worn any Under Armor, either, yesterday, so it's back on today.
Qigong helped that tightness/tenderness I felt and it also helped to stretch the lymph nodes under my left arm. Those swollen lymph nodes have tightened the tissue under my arm, making it hard to stretch over my head.
I had a breakthrough this week - it's just a matter of finding another perspective about my high school days and making my peace with it. It feels like this hard armor or whatever that I'd built over myself is dissolving. This breakthrough came about through Facebook (of all things) and also reading Depak Chopra's "Reinventing the Body, Resurrecting the Soul". It's because of this that I think this New Year will be a good one!
I almost forgot - another friend gave me and my folks some money. Thank you, friend!
Happy 2010! Love you all! I appreciate all the thoughts, prayers, blessings, and energy that people send my way, as always.