Most Expensive Pneumonia Diagnosis Ever!!!

Sorry it has been so long! I've been happily going along feeling pretty good since my last post.

So last Thursday was a busy day for me; I went to see a dermatologist to have a rash checked and I had a routine PET/CT to check on things. I'll start at the beginning- I went to the dermatologist in the morning expecting a prescription for some kind of cream for this weird rash. I wasn't too worried because I'd already shown this rash to two different doctors and both had said it didn't look like cancer. So here I am sitting there and the dermatologist says he really should biopsy it just to be sure. Hmmm...I wasn't sure this was a great idea since I was going to get a PET/CT later on that same day, so I tried to put it off. The doctor said we really shouldn't wait, so he took the biopsy. After he finished I asked when he'd have the results and he said a month!?!?! Yes, a MONTH!?!?! WTF! Had I known that, there would be no way I would have had him do it! I would have gone across the street to the breast surgeon to have it done and gotten the results in a couple days, urgh! The good news is that when I told my oncologist she said she'd get on the horn and get the results herself.

Now for the PET/CT. I got the results of the PET/CT this afternoon after a day of nervous waiting (yeesh, I hate waiting for test results). My scan showed a clean liver, a little something in the skin of my breast (where that rash and the biopsy happened, so who knows what's going on there) and what appears to be pneumonia in my lungs. I've had a hacking cough and chest cold for a couple weeks, but I don't feel too bad. Who else gets pneumonia diagnosed with an $8000 PET/CT?!?! Really it is all pretty good news. I went to get a chest x-ray today so they can check out my lungs before and after the antibiotics. I can't believe I'm saying this, but I'm really hoping I have pneumonia!

So that's all the news and then some. Keith and I are off to the U.P. tomorrow morning for Christmas with the Cormiers. I'm off to finish packing. I'll update again when I hear the results of the biopsy. Merry Christmas to all!

All Healed Up!

I went back for my post-op appointment on Monday. She took a look at my incisions, picked some of the glue out of my belly button (TMI, sorry) and told me I'm healing up well. I got to see some photos of my innards; really cool, but so strange. After years of drawing diagrams of anatomy when I taught biology I sort of forgot that I was drawing "cartoon" versions of everything. In reality they don't look quite like that! The good news is that the ovaries and tubes are clear of cancer and my liver at least looks good from the outside.

After we got home, Keith thought it would have been funny to mess with the doctor and ask her when we could start trying to conceive. That would have been pretty mean, but funny none the less...in a demented way. (we've got to have some laughs!).

Now we just motor along until my next big scan. Not sure when that'll be, should be in the next month or two. I'm getting my Herceptin every three weeks and hopefully that's killing any bits of cancer that are still hanging around!

feeling good

I spent a nice drizzly day lounging.

My mouth is back to normal and I can eat anything (and I have been eating everything!). I'm pretty sore since my innards were shuffled, but it's manageable and I've even taken a couple walks with Red and Keith today. I'm on heavy duty ibuprofen and, thankfully, haven't needed the "big gun" pain killers.

Looking forward to a relaxing and slow weekend!

Resting Comfortably

Back home. So far things are going easier than expected, but we'll see how it goes after the pain meds wear off. Keith went and filled my prescription for heavy duty motrin, and I'm sitting here trying to choke down enough food to safely take the pill. They gave me something that dried out all my secretions so I'm guzzling water and eating salines is a complete joke. I had some broth and seemed ok but crackers are futile. I came out of the sedation much easier than when I had surgery to install my port....what a relief! I just had to wait in the recovery room for a while because I had to prove to them that I could pee (not a problem). I'm tired.....more later.

Unremarkable Scan

Those are the words of the radiologist. The take away point is that they can't see any reason for my hip to hurt. There's no cancer, there's no evidence of arthritis or anything else for that matter. I'm relieved it isn't cancer, but now I've got to figure out how to fix it. I'm wondering if it isn't my bodies reaction to Herceptin or perhaps just a hold over from chemo. Who knows, I'm just relieved it isn't more cancer!

Snip Snip, I'm Getting Fixed

It's been a while since I posted. I've been enjoying the routine of getting back to work. All this cancer crap has made me realize how much I enjoy my job (the teaching part anyway). School is going well, I'm feeling good and I manage to forget about cancer sometimes!

Soon after going back to school I noticed my left hip was bugging me. It is sore and achey and while I think it is getting a little better I'm headed in for an MRI tomorrow to get it checked out. My oncologist isn't too worried about it, so that's heartening.

In other news...I'm all scheduled up for my oophorectomy next Thursday. I need to get this done because my BRCA2 mutation also means I've got a pretty good chance (27%) of getting ovarian cancer. By all reports this surgery will be pretty easy physically. It isn't as easy to wrap my head around emotionally. Keith and I had been trying to have a baby for a while before all this cancer mess started and this surgery will put a definitive end to all that and that makes us both sad. The reality is that knowing I have a 50% chance of passing along my "cancer gene", I probably wouldn't want to be procreating anyway. We've just got to wrap our heads around the upsides of being "child-free" not childless; more time to ourselves and no need to save for college!

Cancer Vacation

Well, my oncologist thinks waiting is the way to go. I'll get rescanned in several months and hopefully Herceptin will do its job and keep things in check! In the mean time I'm taking a cancer vacation. I'm feeling really good, my hair is starting to come back and with three weeks between infusions I'm enjoying forgetting about cancer. Some days I do better at it than others, but I'm working on it. I'm walking a lot, I even went for a bike ride with Keith today. It has been too long since I'd done that. I'm definitely not in biking shape, but that'll come.

I'm getting ready to go back to work. I can't believe there's only one more week of summer!?!?It'll be good to get back to it this year. I'm enjoying getting things organized and I'm crossing my fingers that things go smoothly this year!

As I relax and enjoy what is left of summer I'm enjoying some delicious steaks courtesy of an old colleague. While the steaks are scrumptious, we also enjoyed playing with the dry ice that came in the box (geeky fun). I'm not sure what I did to deserve that box full of goodness, but it is certainly being enjoyed! Thanks PD.

I really owe a whole lot of you a thank you! I know I've said it before, but it bears repeating. Thank you for the meals, the delicious treats, the chocolates, the unexpected gifts, the sweetest cards, the emails, the comments on the blog, the facebook comments, all of it. It has all helped make this most craptastic situation more bearable and for that I thank you. While we're not out of the woods, we have made it through a very ugly patch.

"Everybody gets a humpback whale!"

I'm back from a good visit back east with the family. It was great to catch up with my mom and sister. I even had a chance to spend some time with my cute little three year old niece. She is a funny little one! Her favorite joke is to channel Dane Cook as Oprah..."Everybody gets a humpback whale!" She thinks she's pretty funny and she's right!

So Keith and I went to see the surgeon today to hear about the results of my MRI. MRI's are more precise than the PET/CT scan I had early in July. The point of this MRI was to check on the cancer in my breast so we can decide whether or not I need surgery. According to the MRI there are still three tiny little spots of cancer (about the size of pinheads) in my right breast. This isn't surprising, but even so it isn't what we wanted to hear. It is still unclear whether or not I will have surgery (and this drives me crazy!!). The surgeon will talk it over with my oncologist and we'll take it from there. There is no definitive evidence that removing the primary tumor is helpful once the cancer has spread and in fact leaving it in makes it easier to monitor how effective treatment is. It would be pretty major surgery to have if it doesn't actually help anything..... such a sticky widget. My prediction is that I won't have the surgery right away and we'll wait six months (when I'll have another MRI) and see where we stand. Hopefully the Herceptin will wipe out all the tiny bits that are still left and if not then maybe I'll push for surgery...

We also discussed the impending need for an oophorectomy (removal of my ovaries and fallopian tubes). The fact that I have a BRCA mutation means that I have a 20% chance of getting ovarian cancer. So sometime in the next year or so I'll get that done. It shouldn't be too bad. It's done laparoscopically and the surgeon says it takes only a couple days to recover. I'm hoping to put it off for a couple months anyway...

The reality is that overall I'm still doing better than expected given my starting point back in February.

Scans...

So I'm flying off to the other coast to visit with my family. Lucky for Keith he'll have my scans to keep him company. Here's the deal...When you get a scan you can get a CD copy of all the images. Last week Keith and I decided to take a look at some of the images. They're cool, but some of it is pretty creepy if you ask me. Keith on the other hand is completely fascinated. I think he missed his calling and should have been a radiologist!

A Thankful Birthday!

I had a lovely birthday yesterday. Keith and Red (the dog) and I went for a nice hike at the coast. Then we headed out to Encuentro, a newish vegetarian joint here in Oakland, for a delicious dinner. I can't believe I'm now 38, holy crap!?! Of course this year is a little different, instead of just being disturbed by how fucking old I am, I'm really thankful to be around and living it up! This year has had some incredibly sucktastic times, but for the moment there is "no detectable cancer" and while I'm still bald and tired I'm feeling better and better. I'm walking more than 25 miles a week (Red loves this part!) and I'm finally back doing some sewing (heck I even sold something on Etsy). I still have a stupid number of doctor's appointments (evidenced by the $70,000+ bill from the cancer center last month), but I'm finding a new normal.

I know I've said this before, but it bears saying again... Thank you to everyone who offered support! I can't tell you how touched both of us have been by all the folks who have stepped up to lend a hand, deliver a dinner, send a care package, give a hug, send a card or an email, cover a class or stop in to check and see how things are going. While we may have been able to do it without you, I can't imagine how! Thank you, thank you, thank you!!!

Whew!

We just back from the oncologist and it was all good news! The PET/CT shows no evidence of cancer anywhere!!! Yippee!!! I am not free of treatment; I will continue on Herceptin, keep getting my tumor markers checked every three weeks and I'll get scanned every 4 months or so.

Just to be clear, I don't have the kind of cancer that gets cured. This is great news, but the likelihood is that the cancer will come back. The hope is that Herceptin will work for a good long time and with all this monitoring we'll catch any recurrence early and knock it right back.

I'll post up about the geeky details later.

Thanks for all the support and kind words over the past 6 months. It really helps knowing that I have so many people pulling for me.

We're Baaaaack...

Keith and I are back from our trip to the U.P. It was a nice relaxing trip! It really felt like summer up there. Here in Oakland it is easy to forget what season it is.

I am feeling the cumulative effects of chemo. I'm tired out and I've got a couple mouth sores (not so bad I can't eat, just a pain). I'm going to work on building my reserves back up. Lots of healthy eating, napping and walking.

The next couple of days will be a little nerve wracking. My PET CT on Monday will tell us a lot about what comes next for me. My fingers are crossed things look good. As long as things aren't growing I'm doing pretty good, but the best case would be that they can't see anything on the PET CT. That won't mean there is no cancer left, just that it is too small for them to see. PET CT's take "slices" every 2-3mm so tiny spots can be missed.

If you haven't ever had a PET CT, they're kinda cool. It's really two scans PET (positron emission tomography) and CT (computerized tomography) combined in one. They inject you with a radioactively labelled sugar (¹⁸F-FDG). This sugar is just like a regular glucose molecule except one of the -OH groups is replaced with a radioactive isotope of Fluorine. Cells in your body that are metabolically active will take up this sugar. After they inject you with the sugar, you just sit and relax for a while. Since you aren't exercising and using any of your muscles, and cancer is very active, the areas of cancer suck up the sugar faster than everything else. As the radioactive fluorine in the sugar decays it emits a positron. The big machine you slide into during the scan detects the positrons and correlates them with the CT. A CT scan is really just a very fancy set of X rays. When combined the radiologist can see the hot spots from the the PET scan and can see where those hotspots are located within your body/organs with the CT scan. The images are really pretty cool. Maybe I'll include some in my next post.

After the PET CT you'll be slightly radioactive. It won't last long. The half-life of this isotope of fluorine isn't long (an hour and a half or so). The notes you get will instruct you to stay away from babies and make sure to flush the toilet 2x after you pee for the next 24 hours.

I'll post again on Tuesday or Wednesday, after I get the results. Visualize clear scans!

Great Weekend and a Successful Drip!

Keith and I (and Red) had a great weekend up in redwood country. Trinidad is a gorgeous little town. We hiked almost 12 miles on Saturday!?! I was pretty stiff after that over-achievement.

After a lot of agita and bone soup, I got my 6th round of chemo today. My platelet count was back up in the normal range, but of course there was a hitch. I had a bit of a scare when the nurse said that my white blood cell count was low and he'd paged the doctor. Ugh! I got stressed. In the end my doctor approved chemo. When she came in to talk to me she said, "well your blood counts look really good". Of course I asked her about my WBC count and she said "I'm not worried about it, you're on chemo, its going to get low". That sounds dismissive, but it wasn't; it was reassuring.

In other news, my liver enzymes were all within normal range and my tumor markers are also in the normal range too! Neither is a guarantee, but they are all good signs. I'm nervously excited for my scans in July.

The doctor cleared me for the trip to Michigan! I just need to be careful not to get sick. I have a script for antibiotics just in case and I'll keep an eye on my temperature.

So Close...

Had a frustrating trip to the infusion center today. I was all ready for my last round of this chemo. Got in quickly to get my port accessed and blood drawn, got pulled into the infusion room and got hooked up with the pre-meds. Then the nurse comes in and says there is a new order from my oncologist: I'm not getting taxotere or carboplatin- just herceptin. He couldn't explain why, just said the doctor would be over and I could ask her... My doctor did come by and told me that my platelet count was too low. The cut off is 100 and my count was 94... so close, but not close enough. I realize it is for my own good, but I'm frustrated. Despite all my life surfing talk I'm still a planner and this delay wasn't in my plan. At least it's summer and I don't have work to deal with too. It just means I'll be feeling pretty good for our trip up the coast this coming weekend and I'll be feeling pretty tired for our trip to Michigan for the 4th. (urgh, not the plan I had in mind).

So, now I'm going to take it easy, eat well (bone soup again!) and get those platelets up!

Summer's Almost Here!

Graded my finals, answered emails begging for grades, turned in my gradebook, put the textbooks in order, cleaned up my classroom, hauled all my stuff home- I'm pretty much done!! I've got to go in tomorrow, but there are no kids and all I have left to do is turn in my laptop and my emergency backpack. Summer is so close I can taste it and it tastes great!

Money, Money, Money... MONeee

Thank goodness I have health insurance! Without it I would have two choices; sell the house and spend all we've got on medical bills and go on disability and medicare, or just give up and die. I just got my monthy statement for May and the bill from the cancer center is $34,427.22. In May I had 3 Herceptin only infusions, 1 Taxotere/Carboplatin/Herceptin infusion, 1 set of blood tests, and 3 doctor visits (during infusions). This bill doesn't include prescriptions I have filled at the local pharmacy (another $300 or so) or the visit to cardiology ($300). The crazy part is that May was a pretty cheap month. I only had one full chemo and I didn't get any scans. July will be a much more expensive month because I'll be getting at least two different scans (that'll add another $10,000). It is really hard to wrap my pea brain around all this $$$.

Good Blood...

After feeling more tired than I have ever been in my life on Saturday and Sunday (I seriously wanted a bench to take a rest at the grocery store on Sunday...WTF!), I'm feeling a lot more perky the last day or two. That's probably because I rebounded better than ever this time. They drew blood when I went in for Herceptin this week (they usually don't, not sure why they did this time, but...). I continue to be anemic, but no worse than previously (thank you beef broth!). Only one of my liver enzymes is elevated and even that one isn't super high. This is really impressive for being one week out from chemo. As a comparison; a week after my first round of chemo, my liver enzymes were SKY HIGH. The interesting thing about my blood work is that my sodium was pretty low. I've been craving all things salty so I guess I shouldn't be surprised. I've been instructed to measure out a teaspoon of salt and make sure to sprinkle it on my food over the course of the day. This really isn't much of a problem at the moment because my tastebuds are pretty dull anyway.

After a little back and forth, it looks like I have a work schedule for next year that will make it so I won't miss class time for infusions. No matter how the scans go I can count on having Herceptin infusions for as long as it keeps working for me. My school has a funky seven day rotating block schedule so getting a schedule with some day to day predictability is a huge deal! I'm feeling pretty lucky that it was something that could be accommodated, yippee!!

Well, school is almost over and with all my weeks off for chemo I have to say I'm not quite as burnt out as normal. In fact I'm almost a little nervous about not working. Working has been a really good thing for me through all this crap. Spending time in a room with 25-30 teens means you have no time to think about your own shit. I won't miss getting up at 6am every morning though! That's getting harder and harder!!

Another Round Down

Keith and I had fun celebrating his birthday on Monday. While he went for a bike ride I whipped up a yummy chocolate cake. I used the raspberries from the farmers' market on top (oooh they were so sweet you wouldn't believe it). We managed not to get into the cake until after we had a delicious dinner at FISH. Unfortunately the birthday present I ordered him still hasn't arrived! I should have paid for the quick shipping, urgh.

My blood counts were good enough to get chemo yesterday. I'm still anemic, but not terribly so. I guess I'll just keep on with my beef soup and other iron rich foods (quinoa, lentils, spinach...) and I should be ready for the next round.

I feel fine, pretty lazy, some heart burn, but I managed to walk two miles with good old

Red today.

I talked with my oncologist about what is coming up. I was trying to figure out how to schedule a vacation. It sounds like I'll get a three week dose of herceptin with my next round of chemo. This will give us some flexibility to go away without having to schedule it around infusions. Two weeks after my next chemo I'll get several scans done to check on how things are looking. Those scans will determine what the next steps will be (can't wait!).

Wait and See...

Not much new here. I'm feeling pretty good all things considered. My heart rate is back down to normal this week, so I'm chocking up the racing heart rate I was having to the chemo (or even more likely the steriods I get around the chemo time) not the Herceptin. What a relief!

Keith and I went to see the breast surgeon today. He showed us pictures of the two CT scans of my liver and the change is really pretty impressive. We had only read the report, we hadn't seen the pictures before. I hoped to get a better feel for what is to come, but didn't really learn much. He seemed reluctant to speculate before he sees the scans I will get after my 6th round of TCH (the chemo cocktail). So I guess there isn't much to do but wait and see how things look at the beginning of July. I'm not really a fan of "wait and see", I'm a planner and this is putting a real crimp in my style.

Back when Keith first came out here and we were looking for a place to rent, we looked at a place in Berkeley owned by a woman named Lily. I liked her; she was quirky and she would have been a difficult land lady, but she told me I was a "life surfer". I didn't really feel like one at the time, but I do these days. I'm just riding this wave, not sure where I'll end up, but trying my bestest to enjoy the trip.

The long weekend means no chemo for me until Tuesday. Hopefully that will go easily (fingers crossed by blood counts are good enough to go ahead with it!!). It will be a busy day over there with all the Monday folks squished in with the Tuesday folks.

Three Lovely Years!

Three years ago Keith and I got married and I love him more now than ever! Despite this cancer crap I'm a lucky fucker (well at least in some ways).

I had another Herceptin drip today. My heart rate is still a concern, but we're just going to monitor it for now. The good news today is that my tumor markers are down (they're down to 67 from 133). This is still higher than normal levels, but it is going in the right direction.

I'm feeling really pretty good after the last round. I started taking an iron supplement and it is making a huge difference (that and all that beef broth I've been forcing down). Red (the dog) and I went for a 3.5 mile walk today. I usually get between 2 and 3 miles in, but when I'm tired we do several short walks. Doing a "full pull" is something that I haven't felt energetic enough to commit to in a while.

There are however, a lot of little niggley side effects. I have crazy twitching muscles (right now it is a little muscle right below my right eye), hot flashes (hello chemical menopause), taste buds that don't taste much (therefore I eat more, urgh), my GI tract is always messed up in some way no matter what I do. Now, none of these are terrible (somedays the hot flashes are really intense - I'm trying to find a pattern there, but no luck so far) but they are pretty annoying. The reality is, if these are my only problems, I'm doing pretty well.

4th chemo down!

Keith and I are enjoying having his folks out for a visit. We're showing them the sights and just simply loving spending time with them. I can't tell you how fun it is to show them our neck of the woods. We never in a million years thought they'd make the trek. It's been so nice having them around. What a treat!! Time has flown and we can't believe they're leaving on Thursday.

After last week's great news I was actually looking forward to my cocktail this week. Everything went smoothly yesterday (a little bit of delayed start, but that seems par for the course). I was reveling in the 'comprehensive' part of the cancer center in Berkeley. While I was getting my infusion, I met with the dietician who gave me some great things to help with my anemia (which is getting progressively worse). One of her suggestions was to cook up a batch of beef bone soup (essentially beef broth). I did just that and will be slurping that down with some veggies and maybe even some noodles too.

After the dietician stopped in, I saw the doctor who was filling in for my oncologist (that was just a quick check in) and then I met the social worker. She is really lovely. She sympathized with my frustration at the amount of wait time at the Berkeley facility (and I didn't even bring it up). She gave me suggestions of support groups to try- both at the center and a couple of other places. She also gave me permission not to go to any if I don't feel like it, since the most appropriate group for me would be a metastatic cancer support group and I'm not sure I'm ready for that yet. She also reminded me of all the other programs they have going on there like qigong, yoga, meditation, stress reduction workshops, and more. It's tricky for me to fit everything in while I'm working, but I'm hoping to explore more of these when summer vacation rolls around.

Today I went for my neulasta shot (to keep my white blood cell counts up) and I went to see the cardiologist for an echocardiogram. Turns out my heart looks fine (maybe slightly larger than last time, but it is so slight it may just be differences in measuring). What a load off my mind! If my heart didn't look so good, I'd have to go off the Herceptin (not a good thing!).

In other news one of my friends sent me a care package of several books and a couple of the cutest (and softest!) hand knit hats. One of those books is the No. 1 Ladies Detective Agency by Alexander McCall Smith. It's the first in a series of books (and I'm a huge fan of series at the moment). I loved the book so much that I went out and bought the next couple of books in the series. I'm loving them too. Thankfully there are a 11 books in the series, so I won't run out too soon.

This cocktail seems to be working!

My normally stoic oncologist was borderline giddy today as she went over my CT scan results. My liver tumors have shrunk a ton!!! The big tumor in my liver that had a volume of 36 mL now has a volume of 5 mL. This is cause for celebration!

Assuming things keep going this way, my doctor predicts my liver may be "resolved" by the end of this round of chemo. I won't be done with cancer, I'll still need some surgery and I'll still be getting Herceptin, but it will be a huge step in the right direction!

good news!

Eileen just called me from the infusion center as she awaits her next Herceptin drip. She spoke with the oncologist, who said something to the effect of "if it wasn't bad for your liver, I'd suggest champagne". Her liver tumors have shrunk markedly- they're 85-90% smaller than they were!!

Whew. Things are going in the right direction. Whew whew whew!

Thanks for all the good vibes.

Scan Day...

Went in at 7:30, drank about a liter of mocha flavored barium sulfate drink (I still like the plain better, but mocha is definitely better than banana, yuck!), waited an hour and 45 minutes, got stuck on the first try (yippee!), was injected with radioactive iodine (note: if you ever get this done- the iodine will make you feel like you have peed on yourself, you haven't...thankfully the radiologist that did my first CT scan warned me) and five minutes later my CT scan was done. I went home, ate a little breakfast and went on to work. My stomach has that lovely barium gurgle, but otherwise I'm fine. Hopefully the doctor will have results to go over with me tomorrow afternoon, as my next dose of Herceptin drips in.

In other news the insurance company has finally started to pay my oncologist! I knew they would eventually, but it certainly took a while.

Nose Hair

Be thankful for nose hairs people! Mine are all gone and let me tell you I'm missing them terribly! My nose has officially become a leaky faucet that I can't turn off. I bent over today and it just came dripping right out onto the floor(thankfully none of my students seemed to notice, because you know it isn't that they're just too polite to say anything...). Ick ick ick!

Looking forward to a lovely lazy weekend!

Caution! Edgy

First off, I'm feeling pretty good physically today. I got a good night's sleep and my gullet is more normal (note to self: don't go off the prilosec during chemo week). The only problem is that I'm beginning to realize how fragile I am emotionally. All the stresses I carry around about cancer, appointments, medical tests, teaching, what's in store for me after this round of chemo, (the list is endless), are catching up to me. I am now beginning to understand why so many people in my situation depend on chemicals to keep them sane. In an effort to avoid those chemicals (and their side effects) I'm trying other things.

Today I found iTunes U. If you haven't delved into this treasure trove, I highly recommend it! Classes on anything and everything you can think of from some seriously legit places! Now that I'm getting chemo at a place with WiFi, I might just sit and watch a class during my next drip. I'm getting ahead of myself... Today I downloaded a "class" from UCLA - Recreation called "Yoga Nidra". Holy moly! I went into it a skeptic, but you wouldn't believe how refreshed I felt after just 15 minutes!

Heart Rate

The last several days I've noticed that my heart has been beating very fast. It makes me feel caffeinated and a little edgy. Given the fact that Herceptin sometimes causes damage to your heart muscle, I was worried. So when I went in for my drip today and my heart was still going really fast I asked the nurses about it. They thought it was ok, but they called the doctor in. I talked it through with the doctor, she listened to my heart (which had settled down by this point). Everything sounded ok to her, but to be sure she ordered an EKG. Within about 10 minutes I had an EKG and my heart looks normal (what a relief!). I'll get an appointment with the cardiologist to have an echocardiogram. I had one of those before I started chemo and it is just about time to check and make sure everything is still looking good.

In other news, my liver enzymes are looking much better this week. This is especially surprising since I'm just a week out from chemo. I figure it is a good sign.

Next week will be a big week. I'm going in for a CT Scan of my liver to see how it is responding to the chemo. Fingers crossed that things look as good there as they do in my breast!

All my stress over this stuff has made me realize how important it is for me to find ways to relax. Walking the dog, meditating and taking a bath before bed have all gone a long way to keeping me sane! I need to keep making time for all that stuff (and more).

After being sick for more than 2 weeks, off and on, Keith finally went to the doctor today. Turns out he's not contagious anymore, he might have had more than one cold, but he's gonna be ok. I just feel better knowing he's gotten checked out. His doc said it could be another week or so but he should start clearing up. He needs to rest up so he can be a good host to his folks, who are coming out for a visit in less than 2 weeks!

What a difference 3 miles makes.

So yesterday (a day late, not bad) I had my third chemo day. This means I'm halfway done with this round (we'll just wait and see what comes next). The bigger news is the infusion center at the cancer center over in Berkeley is WAY different from the little infusion center at my doctor's office in Oakland. In every way other than actual distance they are miles apart. I'm not sure which I prefer, but I will say there is a boat load more bureaucratic bullshit at the Berkeley infusion center. I suppose it's unavoidable because it is just so much bigger, but holy cow- do I really need to give you my name and date of birth every time you bring over a new bag of cancer killing stuff (between premeds, chemo and Herceptin I have 8 different bags of crap)?!? There's more, but I won't bore you with it today. The biggest bummer is that I can't get in for my weekly Herceptin drip any later than 3pm (and even that is with special dispensation). Usually their last appointment is at 2:30 (note: the Berkeley infusion center stays open until 7, other note: I never spent more than 1.5 hours in the Oakland office for my weekly drip (and that includes a lot of waiting around)). The reason this is a drag is that I don't get out of work until 3:05, so I've got to get someone to cover my class every Tuesday for the rest of the year (not the worst thing in the world, but...). I guess the benefits of the smaller office Oakland office is that there are less hard and fast rules and more "make it work" kind of flexibility.

Lest you think all I do is bitch on this blog, there are some benefits to the new place.

1. They seem way better at keeping me well informed of meds, lab results, etc. (to the point of it being over the top, but I appreciate it).
2. The nurse practitioner that I'll work with there seems GREAT! Way more accessible and engaged than the one that I worked with at the other office.
3. It sounds like the oncologist will stop in and see me each week while I'm getting my infusion. We'll see how that shakes out.
4. The facility is much newer, but that is balanced by its lack of natural light.
5. I'm waiting to see how the wait times are. Yesterday I spent a lot of time waiting, but that may well have been due to the fact that they were squeezing me in.

Sorted Out (sort of...)

I'm scheduled for chemo tomorrow! Yippee.

The Berkeley office got approval from the insurance for the Carboplatin and the Taxotere (my two chemo meds) but not for the Herceptin (the targeted therapy). WTF?!?!? Who knows. I'll put a call in tomorrow morning and try to figure out what the heck is going on. The only trick is I had to agree to pay for the Herceptin if for some stupid reason the insurance company doesn't approve it.

Frustration!

So not only did I catch a cold, but I'm dealing with the most stupid insurance glitch you can imagine! It turns out my oncologist is only an in-network provider at her Berkeley office not at her Oakland office (why she has two offices less than five miles apart I don't really understand). This means that we're getting billed 20% of the cost of my treatment (thankfully we have an out-of-pocket limit of $2000/year, but still...). To deal with this snafu, I've been transferred to the Berkeley office. This would all be fine and good if this hadn't happened Friday afternoon when I'm due for chemo on Monday morning, URGH! Feel free to stop reading, I'm just going to continue my rant...

So before I can get any treatment at the Berkeley office, I need to have an appointment with my doctor (just bureaucratic BS that is necessitated by the fact that the Berkeley office is a much larger place than the Oakland office). So I go today at 11:30 to meet with the doctor, explain what's going on, tell her I have a cold, pass on the good news about the ultrasound from last week and talk through how to organize treatment. She seemed hopeful they could squeeze me in today and then her nurse came in to help coordinate the appointments. The nurse said there was no way to get in today, but she'd work on it so I could get in as soon as possible (usually it takes a week to get in - not acceptable!).

So Mom and I leave (yeah, my Mom is back! Poor thing is bored out of her skull since Keith and I are both wiped out from this cold). I get home and call my "member champion" at the insurance company. Yes, I have a personal contact at the insurance company to help me navigate this crap (thank goodness). I asked her if she could help expedite the approval of my chemo meds (that have already been approved for use in Oakland) so I can get treatment this week. She was super helpful and while she doesn't do the approvals, she gave me the number of the person who does. I tried the number and only got a voicemail. We'll see how this all shakes out... I'm just in awe of how difficult it is to get the same treatment from the same doctor in an office just 3 miles away. Stupid!

Now I'm going to lie down and read a stupid book and try to relax (and get over this cold) while other people try to figure this shit out.

Progress!

I had a quick appointment with my breast surgeon today. He did a quick ultra-sound to see how the chemo is working (ultra-sounds are a cheap way to check on things, unlike the $6000 PET CT)). The first good sign was he couldn't feel the lump! Yippee! He managed to find it with the ultra-sound, but it is WAY smaller (instead of 3-4 cm it is .3-.8cm depending on the angle). Good news!

In other news, Keith is SICK with a nasty cold. He's tired, he's got a cough and a slight fever. My fingers are all crossed that I don't get this! Who would have thought that the one not getting chemo would get sick first!?!?

Another Drip Down...

Yesterday I went back to work after two weeks off (waking up was hard, otherwise it was great to get back to it!) and I had an uneventful Herceptin drip yesterday and a quick check-in with the oncologist. It is all getting kinda routine (in a good way). Herceptin isn't tough at all, which is a great thing since I'm gonna be on it for a LONG time.

My assignment for this afternoon was to start to unravel the insurance snafus. Holy crap is that annoying! When I "drop in" for my neulasta shot (its the $3000 thing that jump starts my bone marrow and keeps my white blood cell counts up) they've been logging me in under one of the other doctors in the practice. This doctor is only registered with our insurance at his other two offices. As a result the insurance is treating him as an "out of network" doctor and we're getting billed for 20% of the bill. What the heck? Why does it matter which address the doctor bills from!?!? Urgh. So stupid! I called the doctor's office to try to figure this out and they told me not to worry about it, they'd take care of it. Next time I'm there, I'll make sure to follow up!

I'm feeling really good, I could almost forget that I have this crap (except my hair is falling out). I'm a little worried about neuropathy since my fingertips have been sensitive lately, so I'm taking a couple supplements recommended by my nutritionist and okayed by my oncologist.

Great Quick Trip!

We got back from our trip yesterday. It seems crazy that we were in Arizona (albeit for just a second as we walked across the Hoover Dam) yesterday! We had a great time. We didn't quite see everything we wanted to, so we'll just have to go back again (and rent a Jeep so we can get to some of the more remote places in Death Valley).

I'm feeling pretty good. I end up getting really tired by the end of the day. After a long fun day of hiking in Death Valley on Wednesday I was completely wiped out! Thankfully a decent night's sleep did the trick and I was ready to go again on Thursday. Now that we're back home I'd say I feel pretty much normal again.

My hair is really coming out now. As luck would have it this dramatic shedding started on our trip. Not a terrible thing, I made a mess of the hotel shower instead of my own! It is a little weird because it is starting from the top, so I have what looks like male patterned baldness at the moment. The other drag is that my scalp HURTS! I've read some suggestions from folks who swear by using a lint roller on your head, but ooof that hurts! I guess I'll just let it come out on its own time. What's a little more hair in a house with two cats and a dog, at least Keith isn't shedding as much anymore!

It is back to work for me next week. I've gotten used to this no work thing, but with only a week of teaching before my next round, I'll manage. I've got a couple of doctor's appointment's this week, one with my oncologist and the other with my breast surgeon. I've managed to make those appointments for after school, so I won't miss any more time (thankfully!).

If you're interested in seeing some more photos of our trip, head over here:

http://gallery.me.com/eileenium#100014

Gorgeous

We made it to Death Valley without incident. I'm feeling really good,
the flowers are in bloom an the weather is perfect!

Slugging Out

So far so good with round two. I didn't get as achey as I did the first time, but my brain is definitely a little more foggy. Maybe it is just too much TV.

I haven't been as good about taking it easy this week. Thursday I thought Meg and I would go to Costco and get new tires for my car. Who knew this would take more than four hours. Yikes. It wasn't worth the money we saved. However, I did learn that Costco is indeed one of the cheapest places to grab a bite to eat. For $1.50 you can get a HUGE hotdog (not good for chemo stomach) and a bottomless cup of soda. Long story short, I was TIRED at the end of the day on Thursday. Friday we laid low, except for a quick trip to school to pick up some grading. With help from Meg I got through most of it. Yipppee!

It'll be another lazy day for me. I'm trying to get rested up. Keith and I are heading to Death Valley for 2 days next week. We're hoping to see some wildflowers.

Miso Soup!

So my sister Meg arrived yesterday from the East Coast to keep me company this week. I was a little worried about the weather cooperating, but there were no problems (hopefully her return trip will be as easy!).

I'm tired, probably more tired than last round. Or maybe I'm just less keyed up because I have some idea of what to expect. Who knows... I am happy to report I have managed to get my horrible heart burn under control with some drugs! That makes me a happier camper and I think as a result I'm eating a little better this time around. Meg and I made some delicious miso soup with udon noodles and some veggies last night. I can't believe I've never made miso soup at home before. So easy- once you get the miso paste you're pretty much set!

Here's the recipe (I'll note my changes):

Udon with Shiitake Mushrooms and Kale in Miso Broth - From Vegonomicon

1/2 pound of udon noodles (I used the fresh ones you can get at the grocery store, but dry would work too)

2 tablespoons of vegetable oil

1 medium sized red onion, sliced into thin half moons (we only used about 1/2 an onion)

4 ounces of shiitake mushrooms, stems removed and sliced (we went a little heavy on the mushrooms).

(3 carrots, peeled and thinly sliced - these were our addition and they were yummy if I don't say so myself)

3 cloves of garlic (we used 2 large cloves and that was plenty for me)

2 teaspoons of ginger, minced

2 tablespoons of mirin (we didn't have any so this was left out)

2 cups of water

3 tablespoons of miso (more if you're using light or mellow miso)

4 cups of chopped kale (we used swiss chard form the farm box instead, I think any hearty green would work)

2 teaspoons of soy sauce

We added a cup or so of mushroom stock because we wanted a more soupy meal...

1. If you're working with dry udon, cook it according to the package directions. If you've got fresh udon, don't do anything yet!
2. Preheat a large skillet over medium heat. Saute the onion and mushrooms (and carrots if you're including them) in the oil for 5 - 7 minutes, until the mushrooms are tender an onions are softened but still have some crunch (we didn't need all that much time, so keep an eye on things).
3. Add the mirin, water, and miso and bring to a gentle boil (this is where we added the mushrooms stock). If you're using fresh udon add it in now. Lower the heat to a simmer and add the kale (or chard).
4. When the kale is wilted you're ready to serve up!

notes: Next time I'll play around with my veggies...I think snow peas, or just regular peas would be a good addition. If you're feeling like adding some protein, tofu or some chicken would be a yummy addition.

Another Dose of Cancer Killers on Board!

So far so good today...At least I got a good night's sleep. I finally broke down last night and took something to help me sleep better. You see, they give me steroids before my chemo and I keep taking them for a couple of days after chemo. Those buggers keep me feeling pretty good during the day, but I could stay up all night if I'm not careful.

I'm hoping the unpredictable weather we've had around here (hail and rain yesterday) won't keep my sister from getting here for a quick visit. Poor thing will be out here just when I go off the steroids and the side effects of the $3000 Nuelasta shot really kick in (lots of achiness as my bone marrow is encouraged to make white blood cells).

We have also been treated with a yummy home cooked meal from one of my collegues (thanks Tom!), another box of yummies from Zimmerman's and I got the cutest earrings (just the right accessory for a gal who is slowly but surely losing her hair).

Thanks for all the support we've gotten from everyone (encouraging emails, comments on the blog, facebook notes, hugs, offers of help, and all the things I can't think of!). Knowing we've got so many folks rooting for us helps more than you know!

Good Drip

All done with my second round of chemo. This week I got the whole "cocktail". It went fine, it was a lot quicker than last time (they were less worried about allergic reactions). I was home in less than four hours. I managed to talk them out of the Benedryl this time (I didn't need a crazy nap today!). Some minor side effects from the chemo are creeping in already. My tongue is tingly and things don't taste right. Otherwise I feel fine. I even snuck in a run to Target and Fourth Street! I'm a little less worried this time through because I have a clue about what to expect (yes, it might change, but it isn't a complete unknown).

Warning: I'm going to geek out on the chemicals now. I'm a science teacher (who's not teaching today) so I figure I'm allowed. Stop reading now if you have no interest in how the chemo thing works. Here comes the nerdiness...

I start off my cocktail with premeds of Dexamethasone (steroid) and Emend (miracle anti-nausea stuff). These things are supposed to keep the serious side effects at bay. The next up is an hour long drip of Taxotere. Taxotere was first made from the needles of European Yew trees (now it is synthesized in labs). Taxotere works by binding to microtubules and making it impossible for cells to divide. Taxotere and Taxol are both classified as taxanes (Taxol is the "mother" of all taxanes). Taxol was first discovered back in the 1960's after the National Cancer Institute got together with botanists from the USDA to start screening plants in search of compounds that killed cancer cells. It took about 30 years from its discovery in the 1960's before it was approved in the 1990's (holy cow!). Originally Taxol was derived from the bark of the Pacific Yew. Its use as a chemotherapy drug lead to the harvesting of lots of Pacific Yews (it takes a lot of bark to isolate enough Taxol for a chemo drip!). Not only were Pacific Yews not the most common tree to start with, but they grow in forests where you find spotted owls (a threatened species). This was a problem for the first couple years of use, but by 1995 a method for synthesis of taxol in the lab had been developed and the controversy (helping cancer patients vs. saving the forests and the birds) was over.

The Taxotere is followed by a 1/2 hour drip of Carboplatin (yes, I now have some platinum coursing through my veins). Carboplatin is an alkylating agent. It reacts with my DNA and adds alkyl groups (methyl, ethyl etc). Essentially it causes mutations that will hopefully kill the cell. Like all chemotherapy drugs, neither Taxotere nor Carboplatin can tell the difference between cancerous and non-cancerous cells, so it is killing any cell that is undergoing mitosis. Since cancer cells do this so often, they are killed (hopefully), but there are some civilian casualties as well (hair follicles for one thing- my hair is now starting to come out).

I finish up with Herceptin dripped in over a 1/2 hour or so. I go every week for Herceptin and technically that isn't chemo- it is a targeted therapy that works specifically on the cancerous cells and has very few side effects. My cancer cells have an abundance of HER2 receptors sticking out of their cell membranes. This receptor sends messages to regulate cell division, but in cancer cells like mine the HER2 receptors just keep sending the message to divide the cell. This is no good, it makes tumors! Herceptin binds to the HER2 receptors and stops them from sending out the "divide" message. Once it has bound to the HER2 receptors, my immune system (which according to my blood work is doing fine!) gets rid of the cancer cells. Herceptin (a.k.a. trastuzamab) is a wonder drug for HER2+ folks like me.

Once the Herceptin drips through, they flush my port. The weirdest part of this is that I don't really notice the taste or smell of any of the chemo drugs or the Herceptin, but when they flush my port with saline and Heparin (to keep any clots from forming in it) I can taste both. Saline (which should taste like salt water) tastes very chemically and Heparin tastes like fake citrus flavor, weird. The only explanation I can think of is that they really push that stuff in fast with a syringe (no drip drip here at all!). Anyway, once all that is done, they put a bandage on and I'm outta there.

In related news...there is a "super herceptin" (TDM1) drug that is currently in stage 3 trials that sounds very promising. It combines Herceptin (which binds to the HER2 receptors that my cancer cells have an abundance of) with DM1, a chemotherapy agent. This would get chemotherapy straight to the cancer cells rather than spreading it throughout the body. Who knows when or if I'll ever need this drug, but its existence gives me one more option in the fight!!

Just to give credit where credit is due, the info here came from: my doctors (mostly Dr. Z my breast surgeon), carboplatin.org, taxotere.com, the numerous pamphlets I have been handed by my nurses and The Story of Taxol: Nature and Politics in the Pursuit of an Anti-cancer Drug By Jordan Goodman, Vivien Walsh (the preview on Google).

drip 2 of 6

Off to an on-time start....

Sixteen Days Out and Feeling Perky...

It's been sixteen days since they dripped the toxic cancer killing chemicals into me. I'm feeling almost normal. I think I'm a bit more tired than normal, but not bad. My taste buds returned to normal last weekend, so I've been enjoying eating all sorts of things (so refreshing!).

In other news, I've been totally overwhelmed by the kind words of support from my students. One of them set up a Facebook page called "Mrs Rohmer Get Well" (should be "Ms", really, but whatever...it is totally sweet!!). Reading all of their well wishes and kind words is so touching, and I can't help but tear up. Just one more reason I like my job.

Two more days of work and then I'm off for TWO WEEKS (chemo next week and then spring break is the next week). Yippee!

my sleepy wife.

We had an appointment with the oncologist yesterday, and then Eileen went for her weekly Herceptin drip. As you may already assume, we had to wait a long time for both appointments to commence. (I probably wouldn't be as cranky about it if I could get cell service in the waiting room....I'm a slave to technology. Perhaps I'll bring a paperback next time!)

The onc appointment went well. Her blood and liver numbers are looking very good, so that was a huge relief. We also learned that now she doesn't need to get blood drawn every week as she has been. She only needs to go prior to the chemo mondays. That amounts to 2 less needle sticks- always a good thing!

Once she finally was able to get into the infusion center, the drip went without incident save for one thing; The chemo nurse gave her a small dose of Benedryl. She didn't get that last time (and she mentioned it to him) but it seemed routine. Mind you, I had just gone back to work (after being in the office for more than 1.5hrs at that point...) so I wasn't there to play the heavy. (i.e. "she didn't get that last time, would you please call the doctor to confirm?").

Anyway, not a big deal- we're sure it was fine and all, but holy moly- Eileen was ZONKED last night. I got back home from work around 630, we chatted, ate, and she was out. I took Red for a long walk, she didn't stir. I played music. She only grumbled and rolled over. By 10:30, she finally motored from the couch to the bedroom and slept straight through until 5:30am.

She seemed rather refreshed this morning and in good spirits. Maybe we'll ask about the Benedryl next time- (and by that I mean, "hey man....can you hook us up?")

TGIF

I made it through a full week back at work. I'm tired, but otherwise feeling pretty good.

I went and got my blood drawn today just 'cause. I'm not sure whether I needed to or not, but it seemed easier to go get it done than to call the doctor's office to double check (and I'm kinda curious what my numbers look like). That's pretty stupid, but... I ended up meeting the most fascinating Rainman like character at the lab. He could tell ya all the celebrities born on or near your birthday. It was amazing really. I share a birthday with J-Lo and Barry Bonds. If I was born a day later, I'd share a birthday with Diana Ross. He then went on to people who share the same astrological sign. I don't know how he keeps it all in his head and I really don't know how the receptionist there doesn't go completely berzerk and tell him to shut the hell up!

Knocking on Wood.

I have been knocking on wood all day... I feel back to normal, pre-chemo normal! My stomach has pretty much calmed down and my energy level is great. Being back at work has been really good. It helps me get out of my head. Add to that the fact that the weather here is gorgeous (low 70's and sunny, LOVE IT!). Red (the dog) and I got out for our 2+ miles and could've kept going. I'm doing well (except for the fact that I have FUCKING CANCER, urgh!).

In other news, I have to say I already love my portacath. When they accessed it today it didn't hurt a bit (thanks to a bit of lidocaine). My portacath is this tiny thing about the size of a lifesaver with a tube attached to it. The tube goes straight into my jugular vein. This way I don't have someone poking around trying to get a vein every week! Yippee! Keith and I are both wondering why some IV drug users don't go this route (or maybe they do, who knows right?). It seems way easier than trying to find a vein everytime! (albeit expensive).

I like to bitch.

Sure, I like to bitch on occasion. We all like to get our digs in when we have to wait too long at the post office, or that ass-hat in front of you doesn't signal his turn. Happens every day, and the little frustrations get easily defused with a simple "oh pah-leeeze" or the like. But let me tell you; fuck cancer and its associated ball of potential bitchpoints. I think we hit a new record clusterfuck quotient today. Yes yes, not to worry- it all ended up ok, but FOR PETESAKES!! Argh. I'll spare you some of the details, but the take home points are thus:

-I find it incredibly disrespectful and truly annoying that an oncologist's office consistently runs behind schedule. Take a hint- if your first appointment of the day cannot commence within an acceptable period of time, how about you rethink your scheduling? Today, our 8:45am appointment actually began at 9:12. I know that may not sound like a big deal, but this stuff is cumulative. We've figured out that in 2 visits we have waited to see the oncologist for about 1.5 hours, and we've only seen her for 45 minutes. I'm not a fan of that ratio.

-Sounds like our issue of non-returned calls and calls not getting through to the office has been rectified. I sure hope that is the case, because I can't tell you how frustrating it can be to have an uncomfortable wife asking if it's ok to take this med or that med....and not being able to get that answer in a timely manner....especially after you've been told on numerous occasions to "call anytime, we'll get right back to you". Don't lie.

-And the winner of the clusterfuck of the day: "What do you mean, she's supposed to be getting WEEKLY Herceptin doses??....nobody told us that?!!??" It worked out ok, it being only Tuesday. They were able to get her an infusion appointment right then (well, after waiting another 20minutes or so....remember, it's cumulative!). Turns out the schedule we were given was incorrect. I can accept the screwup, that's fine....those things happen. But, don't you think that SOMEBODY would have caught that a while back and given us a call? Shit like that does not instill confidence.

We see now that we need to be much more proactive with this aspect of the process. We can't be quite as confident that all appointments, prescriptions, and procedures will fall into place when we're told they will be. Followup is my new middle name. "I'm sorry to bother you again, I'm just wanting to confirm this upcoming appointment...is this correct?...oh great, thank you...is the doctor running behind? ok, just checking...."

Ok well thanks for the vent, I feel a little better now.

On the bright side, E feels good to have another dose of cancer killing toxins on board. The chemo nurses are really pretty cool (and were apologetic about the snafu). Our new favorite nurse, "The Animated One", is really really good with needles. E didn't feel the port poke hardly at all this time!

Those tumors don't stand a chance. We may have a scrappy team, but they've got a good set of killing tools.

Fuck you cancer.

Back to school.

Red and I drove Eileen up the hill to school today (and then hiked home). E's feeling pretty good and I know she's excited to be back at work (instead of sitting at home over-analyzing how she feels). Hopefully her ooglyness will remain at bay throughout the day. I've had a full week at work without the hair, but I'm sure she'll now experience the flurry of surprised looks and questions about her new "do". Bound to happen and not much to be done about it.

I'm hoping she continues to feel ok. It'd sure be swell if this is more or less how it'll be (i.e. managable). We're staying positive and taking lots of walks!

Keith

Lazy Days

I've been feeling pretty good the last couple of days. I'm lazy, but have managed to walk between 2 and 3 miles every day this week. Having a dog around helps with motivation!! My stomach is ok once I get going but first thing in the morning I am pretty oogley. After I get some toast things start to settle in.

My mom is on her way back home today. She helped with a bunch of easy grading and recording of grades. I wouldn't have powered through it without her! She was great company during my first round of chemo. All in all, this week wasn't so bad (knock on wood). It'll be nice to go into the next round knowing a little bit about what to expect.

I'm just gonna take it easy, walk the dog, watch some tv and enjoy these sunshiny days before I head back to work on Monday!

Three Days Post Drip

This button came in that crazy amazing gift basket yesterday! It cracks me up.

Feeling tired and achy today. Not so bad that I couldn't get out to do some food shopping and dog walking, but I'm glad I didn't have to go to work.

Hair, Hats and Wigs, Oh My...

There it is; the picture you've been waiting for...Not as bad as I thought it'd be, in fact I could get used to it. Although my head gets pretty cold (actually our heads both get pretty cold).

Today started off with the delivery of the most over the top gift basket you can imagine! Thank you to that entire group!

I'm still feeling pretty good, it was nice to have a day without a visit to a doctor's office! Just puttered around, bought a wig (that I can't really imagine wearing, but what the heck!), enjoyed a calm browse at REI. I never go there on a weekday, it's really quite nice. My mom and I walked the dog and after all that I'm beat. This is the first day where I can really feel the fatigue. It's not terrible, but it's there.

Dinner is being delivered by some of my delightful students and I'm told we'll be enjoying some yummy mac n' cheese and apple cobbler! Can't wait.

So far so good.

I'm feeling pretty good, despite the fact that I've been sitting around analyzing every last thing. I'm happy to report that I'm feeling pretty perky (thank you steroids) and I'm not nauseous (thank you Emend, the very pricey "anti-nausea bomb"). I have spent the day lazying around, getting a shot in the stomach to kick start my bone marrow into making more white blood cells, trying to figure out some insurance snafu, going to Costco to pick up a couple of things before my mom's arrival and chatting on the phone. Not bad for the day after my first session of chemo.

There were quite a few goodies delivered by the UPS fairy today! A gorgeous orchid, a box of yummies from Zingerman's, a new hat and a gorgeous bouquet of flowers.

In other news, Keith buzzed my hair today. I actually like it short (very very short). It's just a little chilly up there. I'll post a photo tomorrow.

I'm off to watch some TV and try to get my mom settled in.

First One Down...

Keith and I are finally back home after my marathon drip, some assing around trying to get scheduled for everything else and getting meds from the in-house pharmacist (way easier than having to go to the drug store!). Keith was great, he came with me this morning and stayed with me for an hour or so, then he went to work for a bit and came back at 2:00. What a guy!

The other guy in my life today was G my infusion nurse. He explained everything, kept me smiling and even let me take a quick picture of my first bag of chemo!!

Everything went fine, but they had us worried at first. My liver enzyme levels were pretty high, so they had to call Dr. Y to check and see if we could go ahead. Thankfully she gave the go ahead and we got started (albeit 45 minutes late, Keith says "that is why you're called a 'patient'").

Before the chemo drugs start they give me a bunch of "pre-meds". This includes several different anti-nausea drugs, benedryl and steroids. The benedryl kicked my ass. As soon as they injected it I felt it. I'm gaining an understanding for intravenous drug use. The benedryl made me sleepy and out of it for a couple hours.

Then the chemo starts (taxotere first, then carboplatin, then herceptin). Everything went in very slowly today just in case I had a bad reaction (my next drip should take less time, thankfully!).

The only thing that hurt was accessing the port. My port is still tender (I've only had it a little over a week) and they have to push pretty hard to find the right spot in there. Once they got in, it was fine, but ooof, I'm going to have to get some numbing cream before my next drip!

Now I'm just sitting around waiting for the side effects to come... Actually, I'm going to force myself to get up and walk the dog in a bit. I should be fine today (with all those pre-meds) and tomorrow I'll go back in for a Neulasta shot (kick start my bone marrow) and I'll start taking some heavy duty anti-nausea pills (the pharmacist called one an anti-nausea bomb). Fingers crossed it all works and I continue feeling pretty good!

Better living through chemistry.

Count Down to Chemo...

Tomorrow at this time I'll be done with my first chemo drip (not done with the side effects, but that's another matter entirely). We've had a lazy weekend getting things pulled together before this next chapter starts. We cleaned the house, made and froze some dinners (and dog treats), put up a new shower curtain (as per the "chemotherapy and you" pamphlet) and Keith dove in to the no hair pond to check the water for me. He says the water is fine and I say he looks great! I'm up next and I'm still debating whether to spend the money on a cute very short hair cut (that will only last a week or so) or to just have Keith buzz it. At the moment I'm leaning towards having Keith buzz it.

I'll post tomorrow after (or maybe during) my drip.

Set for Take Off...

After yesterday's frustrations, today was great!

My CT scan was easy (although I still have that barium gurgle in my gullet, sorry if that's just TMI) and the cardiologist, who stood me up yesterday, fit me in for my heart checkup. I even was told that my kidneys are perfect and my heart looks normal. I'm a sucker for any good news at the moment.

Now I'm all done with testing and I'm even scheduled for chemo! Yes, I will finally start getting rid of this shit!!! My chemo starts on Monday. It'll be a long one because it is my first dose, so I'll need to bring plenty to do so I don't go crazy sitting around for 4.5-5hours!

Not much left to do now but get a blood test (another stick in my battered arms/hands) and wait.

Thanks for all the well wishes!

CT Scan

I had my abdominal CT Scan this morning. There was no waiting, quick service and a really friendly radiologist. I couldn't ask for more. I got there at 8:45 and was home before 9:30. The best part is I have a sub covering my classes until 12:30 so I'm just going to relax and walk the dog now.

84%

In other news, the results of my genetic testing are back. It wasn't a surprise to learn that I have a genetic predisposition for breast cancer. I find all this stuff fascinating (I just wish it didn't apply to me). Here's a blurb from the report:

The results of this analysis are consistent with the germline BRCA2 mutation 2378delG, resulting in premature truncation of the BRCA2 protein at amino acid position 729. Although the exact risk of breast and ovarian cancer conferred by this specific mutation has not been determined, studies of this type of mutation in high-risk families indicate that deleterious mutations in BRCA2 may confer as much as an 84% risk of breast cancer and a 27% risk of ovarian cancer by age 70 in women (Am. J. Hum. Genet. 62:676-689, 1998).

I just can't get over that I had an 84% chance of getting breast cancer. This doesn't really impact the treatment of my breast cancer, although I'll be going in to talk to Dr. Z (the surgeon not the oncologist) about dealing with the risk of ovarian cancer.

Why am I so excited about chemo?

Today I'm cranky, not depressed or down, just cranky. I had an appointment to see a cardiologist to have my heart checked out. The herceptin that I'll be getting in my chemo cocktail damages heart muscle is a small percentage of folks, so they want to have a baseline picture of my heart prior to chemo. The nice part about this appointment is that it fell right at the beginning of my two free periods (I didn't need a sub, yippee! This never happens!). I teach my first class and hustle down the hill to the doctor's office. I get there and wait for a bit before the receptionist opens the little window to say "I'm so sorry, the doctor is home sick today with a fever." WTF! I asked why she didn't call to tell me and get nowhere, urgh. I need this test before I can start chemo. Chemo that I need because this cancer is dividing and dividing inside me (a thought that makes me sick to my stomach). The receptionist can tell I'm mad and freaking out as I tell her I'm waiting on this test before I can start chemo. She starts working on rescheduling me and finds time on Friday when they can fit me in. FRIDAY?!?! I was hoping to start chemo by Friday. I left that office and went right downstairs to the oncologist's office. I'm freaking out and walk in and talk to the receptionist who talks me down a bit. She's surprised they can't fit me in earlier but says even if it is Friday I should be able to start chemo on Monday. I leave feeling better, but still fuming that no one in the cardiologist's office thought to call and tell me not to come!?

Wait, there's more...

I got home and checked the phone; two new messages.

Before I talk about the messages, let me give you the background, I have a CAT scan of my liver tomorrow (another baseline kind of thing). When they scheduled me for this scan (on Friday) they told me I needed to get some blood tests. I dutifully went and got blood drawn (my hands and forarms are now such a mess from all this that a kid asked me if I had gotten my hand slammed in a door, yikes!) on Friday afternoon.

Back to the messages. The first was from someone at the oncologists office who said that they hadn't gotten the results of my blood tests and "I thought I told you how important it was to have these blood tests done." She was scolding me! The second was from someone at the CT scan place who told me at least three times that if they didn't get these blood results my CT scan would be cancelled. So I call back to figure this stuff out and it turns out the lab where I had my blood taken had misspelled my name but they'd finally figured it out and I get to drink my barium tonight!

Yippee!

The Best Words Ever!

"Your brain MRI is clear." -Dr. Z

Thanks for all the prayers, crossed fingers, good vibes and good thoughts! Happy Weekend!!

Waiting Rooms and Doorsteps Piled with Treats!

Warning I'm gonna rant for a moment...

The last two afternoons I've gotten coverage for my last class (everyone at school has been amazingly supportive!) so I can go to appointments. Both afternoons I've watched the clocks in the waiting rooms click away (actually I watch my phone, because they don't have clocks in waiting rooms!!). In the end I could have stayed at work for the full day both days because people were running so late. This pisses me off. I understand about emergencies and the like, but urgh.

Now the good stuff...

I came home this afternoon to find a pile of all sorts of treats from various family members. If you live nearby, you might want to swing by for some Godiva chocolates, H&H bagels, smoked salmon, amazing English cheddar cheese, brownies, fresh bread and I might even read to you from one of my the addicting and kinda scary books. Thanks to all of you. Keith and I feel quite loved (and FULL).

The brain MRI went fine today (when I finally got in). Keith would have totally freaked out if he had gotten his head clamped in and then got shoved into that tiny tube. Not sure when we'll get the results. Not super keyed up about it either (not sure why).

The insurance company approved the chemo as well as some other diagnostic tests (yippee, more tests). Doctor Y was expecting it to take 1-2 weeks to get the chemo approved, so this is great news! We're feeling lucky to have good insurance.

I'm still working to figure out how to deal with work, but I can't even describe how supportive and accommodating my boss is. There are a lot of unknowns, but I have options and flexibility. Keith's work has continued to be amazingly supportive and understanding of all his time spent not working on the movie (which happens to be in crunch time). We're lucky fuckers (well kinda).

Easy Chairs and IVs

These things are in my future!

We just got done with a marathon session where we met the oncologist and previewed the new chemo digs. The oncologist (Dr. Y) is very serious and frank but in a comforting and thorough way. Sounds like I'm in it for the long haul here. My first chemo session will happen as soon as the insurance approves. Then I'll have chemo every three weeks for the next 18 weeks. That's the current plan...

I've got a few more tests in my future, but none sound quite as bad as that PET CT. I'll have an ultrasound of my heart to get a baseline before I start chemo. One of the drugs I'll be getting can damage the heart muscle, so I'll be getting these periodically. I'll also have a CAT scan of my liver also for a baseline before I start chemo. Thankfully PET CT's are too expensive to use as a routine check of how the cancer is responding to chemo, so I'll just be getting these every so often to check the kill rate.

I also got a script for a wig. Holy moly, I'm not sure I'm ready for that shit. Keith swears he's gonna shave his head in solidarity (I'll believe it when I see it).

The next decision is how to deal with work. I'm not sure yet what I want to do (or will be able to do). Ideally I'd keep working, but I don't think I'll be able to work full time for a while. Still figuring this part out, lots to consider.

Brain scan tomorrow, should be a party. It'd be nice to get some good news for a change and have this one be clear! Keep your fingers crossed.

As an aside Red (our dog) has been super well behaved. I think he knows something is up (what a love).

The Waiting Game

I put in a full day's work today. It was good to get back to it. I feel pretty much back to normal after the surgery. The portacath is still a really alien thing though. I catch myself moving a certain way and feeling it in there (ick, ick). I'm getting much more used to it and I'll be relieved to put it to use (and avoid all the sticks!).

In the back of my mind all day were the results from my PET CT, so I called the Doctor as soon as I got home. He called me back a couple hours later with the results. The bad news is that there is cancer in my liver (fuck, fuck, fuck!). The good news is they don't see it anywhere else (not even any other lymph nodes).

So, I have stage IV breast cancer (fuck, fuck, fuck!).

We're headed to the oncologist tomorrow afternoon to talk about the "cocktail" I'll be getting to kill this shit.

Even though the news is bad, we're counting our blessings that it isn't worse (and it could've been WAY worse). We're hanging in there and looking forward to watching LOST tonight.

Two More Tests Down

Both the breast MRI and the PET CT went fine. I'm feeling like a much happier person now that I can eat carbs again. I can't tell you how much I wanted some kind of bread/cracker/donut/cookie/potato over the last 24 hours or so. Keith kindly bought me my favorite Pixar meal (smoked salmon pizza). I'm now relaxing comfortably eating and watching some TV.

All this testing is making me very glad I'm not claustraphobic. All I could think of as I was strapped in and moving into the tunnel was how much Keith would hate it. If he ever needs one, he's going to have to get some serious meds!

No appointments tomorrow, just work. I'm looking forward to it!

pets and cats

E is off at the PET/CT scan place.  I'm at work trying to contribute a little bit.  She assured me she'd be fine and wanted me to sit this one out.  She texted me saying that, in going with the theme of the day, she was just sitting and waiting again.  They must've called her in though cuz she didn't respond to that last great joke I sent her.  She said the barium was making her feel pretty oogley, to which I responded to look on the bright side- at least she's radioactive.  Sorry, just gotta make light of it sometimes.  Thanks for all the good thoughts everyone.

Early appointments....

E is in for her MRI. We arrived at 630am, and after 6 minutes of
paperwork, we sat for another hour. The wizard of oz is playing on the
tv. Loud. It's very random and bizarre background sounds. She should
be out soon.

Sleepy Sunday

Still just laying low today. The doctor said I could resume regular activities immediately, but I just don't see how that's possible. I'm off the serious pain meds and feel pretty good, but I'm crazy tired. I'm going to force myself to get cleaned up and get out of the house today. I'm sure just getting out of the house will help.

I seem to be healing up fine. I've got a day of testing ahead of me tomorrow, but it should go easily (except for the gross banana flavored barium smoothy I have to drink, I'm dreading that!).

Home.

We finally got home around 8pm. Eileen was super groggy but now she's
mostly herself, just drowsy. Some pain meds and lots of icepacks are
doing their thing. Some sprite and saltines are going down fine-
nausea is gone. Found some nice stupid tv, threw the ball for red, fed
all the animals, wolfed down some leftover pasta myself, and......I'm
gonna call that a day. We're smiling about having this step over with.

Later.