No partying for the chemo kid...

Just in case you all were wondering what fun and exciting plans I had for this new year's eve... there aren't any. :( Well, at least not your traditional new year's eve fun. No drinking allowed while I'm on chemo...at least not for the first couple of days. If I'm already slightly nauseated, the extra push from alcohol would not be a good idea. I have this homemade eggnog in the fridge, too, so I'm a bit saddened I can't have any. Jake is on so many meds that he's not supposed to take with alcohol and my mom is a diabetic.... so the eggnog just waits.

Meanwhile, I've been enjoying the company of my mom and sister. They might not be having a lot of fun, but we've managed to really clean up the house and just spend time together. I think tonight we'll watch movies and play games. It'll be like new year's when I was a little kid... getting to stay up late and play card games with my family.

So...I may not get my toast at midnight, but I'll just be thankful to be with my family and to be getting one step closer to getting rid of this cancer once and for all.

The machine is down...

I just got a call from one of the technicians and I guess the radiation machine is down, so no radiation today. In one respect I'm happy, because I was starting to get side effects, like my throat seems to be closing in a bit and my neck is starting to get irritated/itchy. On the other hand, I will be making up this missed day by coming in on Sunday, therefore making next week a 6-day week of treatment. Three days worth this week was taxing enough, I can only imagine how bad next week would be.

I'm doing a little better tiredness-wise today, but still just feel out of it. I hope I feel better by Monday or else I'm going to be skipping out on work a lot earlier than I had anticipated. :\

exchanging nausea for napping

Well, I tried to wake up during the night to take the anti-nausea meds, which seemed to make things quite a bit better today. However, I have been soooooooo tired, it's ridiculous. For someone who already knows what it's like to be tired (as mildly narcoleptic) this is taking it far to the extreme. I can barely stay awake more than a few minutes. This "chemo fatigue" as they call it, seems to be normal, but it sure is annoying. The doctor suggested trying to go for a walk tomorrow morning or something. We'll see what I can do.

Anyway, that's about all I can write for now, I need to go lay down for a bit. :\

And the side effects begin...

So last night as I was sleeping, I kept waking up feeling slightly nauseated and thinking I was asking Jake for medicine, when in fact, I think I was just dreaming most of that. Around 7 or so I actually woke up and asked Jake for medicine, but I think it was too late. I have been extremely nauseated all day. The only thing I've been able to keep down so far is some water. I couldn't even keep down the honey I'm supposed to take with the radiation treatment. *sigh* It hasn't been a good day. I'm hoping this is just the nausea from chemo that is only supposed to last a day or two. On the bright side the radiation mask didn't seem quite so tight and I made it through the whole scan without needing to puke. :\

You can call me waffle-face

1 treatment down. 32 to go.

No side effects to report of yet. The chemo went well. The port is soooo much easier than getting an IV inserted in to a vein! For the chemo appt. I had blood drawn, anti-nausea meds, fluids, cisplatin, then more fluids. Aside from the many trips to the bathroom due to the high amounts of fluid, I just sat around and played board games with Jake... and then my mom and sister too when they showed up. :) All in all, a long but not too terrible experience.

The radiation was a little more unpleasant. The whole appointment was probably less than an hour, but THANKS to Dr. Nyugen's fatten-me-up diet, I had put on 5 lbs since the mask was made and so it was REALLY TIGHT! I left the machine 20 minutes later with the plastic grid imprinted in my face. Next time I'll be sure to get all of my hair out of the way and hopefully maintain or not lose more than a few lbs over the next few weeks. :\

Well, dinner is in the oven, so I better go keep an eye on it. Thanks everyone for the well-wishes today. So far, so good. :)

tomorrow, you're only a day away

Today is my last day of rest before my months-long personal war on cancer begins. So, do I have exciting plans for today? Did Jake and I ever go skiing? No and no, but you know what? That's ok.

My plans for today include tidying up the house, doing dishes, roomba-ing, and grocery shopping. This may not seem like an enjoyable way to spend my last day pre-treatment, but to me I just want to feel normal. When the day comes that I can't take care of basic household tasks, that will be the day I feel defeated. Plus, if I get the house in its best shape now, it will take less to maintain that over the next several weeks.

I'm actually enjoying just spending time at home, as well. We finally got our tv and surround sound set up. I was decorating cookies in the kitchen yesterday while we were watching a movie. I was looking down at the cookies when someone in the movie started shooting a gun. For a split second I thought someone was shooting at me! I guess we have a pretty sweet setup, but it makes for some scary movie-watching experiences.

My mom and sister were supposed to be here today. The weather was pretty horrific in Oklahoma, though, so after driving about 20 miles yesterday they had to turn around. Luckily I got a phone call an hour or so ago saying the sun had come up and they had made it past the affected area. They were on their way. Horay! They should be getting in some time tomorrow. I guess they won't be playing games with me at the cancer center tomorrow morning, but I am very happy they were able to make it at all. :)

This also explains why I will be spending today cleaning house. Yes, I know, I have an excuse for not keeping my house clean... but there's this instinct you have to have your house in tip-top shape whenever your parents show up. I don't know why I have it, I just do.

On that note, I better go. I have some dirty dishes calling my name.

Merry Christmas!

Again, I don't have much to write about. Jake and I had a quiet day at home. I did some baking and finally printed out our holiday letters (I'll be mailing those all tomorrow). Jake went out flying his RC helicopter. We rented some movies. All-in-all it was a good day.

I just wanted to quickly post to wish everyone out there a Merry Christmas. I find out every day more and more people that are reading this blog. It gives me strength and comfort to know there are so many people out there taking interest in my story and wishing me well. Thanks to you all!

So... Merry Christmas to all and to all a good night. :)

It's official.

Treatments start Monday, 12/28. They finished my radiation plan and called me today to schedule. I will be starting chemo at 8am Monday morning followed by radiation treatment 1 of 33 at 3:30pm.

My mom and sister are coming to visit next week (yay!) but it seems they will spending their first full day here at various cancer centers in town. Oh well... they're coming to spend time with me, right? It doesn't matter if we're hanging out putting together jigsaw puzzles while I'm having metallic cancer-fighting drugs pumped into me. :)

I don't really have much more to write about. I have a nice break from work for the next 1.5 weeks. I'm enjoying my break from doctor visits by doing a lot of fancy cooking and baking. Other than that, Jake and I are excited about getting our Christmas gift to each other all set up (a new tv with surround sound speakers). The various components (tv, receiver, cables, speaker mounts) have been/will be arriving in the mail each day, so that's been fun.

Until next time then.... :)

Our kitchen counter looks like a pharmacy

Believe it or not we're still waiting on 5 more prescriptions to be filled between the two of us!

In addition to the normal tylenol and excedrin we have lying around, I've been given 2-4 prescriptions from every doctor I've seen in the past couple of days. Jake has been filling his fair share of prescriptions, as well.

Yesterday, we met with Jake's neurologist again. I really don't know how much I trust this guy anymore. When we told him the steroids weren't doing anything he asked if we wanted to continue on them for a few more months to see if they eventually did. He still seemed to think Jake was suffering from HE, when the steroids clearly weren't doing anything. I brought up the fact that there are people with high antibodies levels that do not have Hashimoto's diseases, and his response was that there was a small subset of people where that was true, but since Jake had high levels, normal scans, and neurological pain symptoms it had to be HE. Regardless of the doctors confidence in his diagnosis, he told Jake to go ahead and taper himself off the steroids (without actually giving us a step down plan) and then gave him prescriptions for two drugs that might help (one being Lyrica, a treatment for fibromyalgia, which I had Jake ask about the first day he saw this doctor. The doctor had said there was no way it could be fibromyalgia and did all those other tests first.). The neurologist also refilled the prescription for percoset, so at least Jake is in a good mood most of the time. I'm tired of Jake having to establish himself with new doctors all the time, but I'm wondering if it's getting to the point to do that again.

Taking a week off from cancer

Well, I called the RO's office yesterday to see if they had my program created yet. They did not. They said they might have it done by Wednesday or Thursday but I should probably just plan on waiting a week. So, the new plan is to start chemo and radiation treatments on Monday, Dec. 29. A lot of you might be thinking how great it is that now I don't have to be dealing with that for Christmas, but the truth is now that just puts me one week further back from being in remission. I'm a bit bummed that it didn't work out.

So now I'm just trying to figure out what I'm going to do during this week off from cancer. I'm trying to think of things that may not be as easy or enjoyable once treatment starts. Maybe Jake and I will venture up to Mt. Lemmon (and if snowy enough, go skiing). I should probably do a lot of baking since my taste buds will be messed up for about a year (at least) once treatments begin. Maybe I should do lots of drinking since I'm not supposed to do that while I'm on chemo. Hmm... that one doesn't sound like that good of an idea.

Oh, I also want to let you know I'm off of vicodin. I took some tylenol yesterday and don't really think I'll need anything today. So.... I should be fully alert at work on Monday. :)

Vicodin, friend or foe?

This relatively smooth surgery yesterday was just a cover-up for the fact that it still is painful to have some foreign thing jammed into your chest. It's not too bad, until I decide to move my right arm up and in front of me.... like to turn off the alarm clock, or brush my teeth, or pull my hair back, or pick up my coffee mug, or put on my coat, or pick up my purse, etc. Luckily, this vicodin stuff is pretty awesome and makes the pain go right away. Of course, it also seems to make all my concentration and alertness go away too. It was pretty hard to get anything done at work today to tell you the truth. I ended up working on my year's accomplishments tonight at home (they were due today... whoops). I don't know if this working + vicodin = a good idea. I think last night I responded to someone's email with "42" and then started laughing hysterically. Yes, I know that's the answer to everything. The question was if I knew how many of a certain tool we had. The answer really was 42. Finding out that "How many holding fixtures do we have?" is the ultimate question was kind of a let down.

Anyway, I'm sure half of what I'm writing makes no sense, but hey, at least I'm not in any pain.

I'll try to update tomorrow after Jake's visit with the doctor. We'll also be heading back to the chemo clinic for an "Intro to Chemo" class with the nurses. The clinic is nearby some malls and Jake and I have a bit more holiday shopping to do, so it should be a good afternoon.

Until then.... good night.

So I stayed awake for surgery...

So this marks my 2nd post within an hour. Maybe that's against blog etiquette. I have no idea. I'm just sorta confined the the couch right now, so laying back and typing is about the most active thing I can do... so I figured I'd blog about the port surgery.

So, I have to say UMC gets high marks for efficiency. My two previous surgeries at the Mayo Clinic always involved long waits for everything. This port placement procedure at UMC had me checked in to out the door in 4 hours! I was very impressed. They also had this neat monitor in the waiting room with a patient number and color codes for pre-op, various stages of the operation, or the recovery area. So Jake got a number when we checked in and he could keep an eye on where I was the whole time. Very cool.

The scariest part of the day was when I had my meeting with the anesthesiologist. He took a look at how my tongue was a bit constrained from moving down and the fact that my previous surgery still had me a bit stiff and harder for me to tilt my head up. He suggested that we just do local anesthesia and just drug me up so I don't really remember what was going on. Even if I didn't remember it, the idea of being in a room where I'd be having things jabbed into my chest while hearing and feeling things going on was really quite frightening. I weighed the pros and cons.... I really wouldn't remember it, I wouldn't have to worry about coming out with a sore throat from being intubated, I would be released quicker, there were less risks involved.... The only con was just the idea of how scary it might be. The anesthesiologist assured me that since we'd be talking, if I indicated I was in pain or uncomfortable, he could always just put me out with general anesthesia. So I went ahead and opted to be awake for surgery.

You know what...it wasn't that bad. I remember discomfort in my hand from the drugs going into the IV. I remember blue sheets over my head. I remember asking if the port was in or asking if they were putting in stitches or whatnot. I remember Dr. Ong telling the resident something about how surgeries were like cooking because you have to line up things ahead of time. I think the resident put in the stitches and I remember Dr. Ong telling him it was one of the best looking ports he's seen. Then as they were cleaning up I started coming back to normal. I was able to move myself from the surgery table to the one that rolled me to the resting area. They got me some juice as they took my vitals and wrote my discharge instructions & prescriptions. Before long I was dressed and in a wheelchair being taken out to Jake's car.

Now I'm laying here on the couch. The local anesthesia is starting to wear off on the incision site. Jake took my prescriptions to Walgreens (all 7 of them! 2 from the RO, 3 from the MO, and 2 from the SO). I think I need to take some of this vicodin soon, but unfortunately the vicodin is still in process and when I just called them to ask the status they said they'd have it ready in an hour. An hour! I'm in pain here! What is wrong with these folks. :(

Jake just left to go talk some sense into them in person. I'm going to try to take a nap until they're ready.

Yay for a good surgery experience. Yay for a good-looking port. Yay for a husband to take care of me. Yay for not having to get IVs again!!!!

Boo for Walgreens pharmacy staff today. (and they're normally so good)

A post about Jake <3

First of all I will just start by saying how great my husband has been through all of this. With his own medical drama, he still manages time to take me where I need to be, make late night runs to pick up ensure, drop of my prescriptions at Walgreens while I'm laying on the couch making blog posts because I'm still groggy from the local anesthesia, etc.

Mostly though, I'd like to write about him since I have been getting a lot of emails asking how he is doing or phone calls from my mother saying people are asking her about him. I realized I left you all in limbo after his hospital stay 2 weekends ago.

So...a little update. Unfortunately, about the best thing that came from his hospital stay was a prescription for Percoset. His chronic pain issues have not subsided one bit. It seems his headaches may have died down a bit, but other than that, there has been no improvement. IF he had HE and IF that was what was causing his pain, that steroid treatment would have had him feeling tons better by now. My impression from the doctors was that his raised antibodies levels clearly indicated that he had a Hashimoto's disease and since he had normal thyroid function and seemingly neurological symptoms, it was definitely Hashimoto's Encephalopathy. In doing more research (or mainly in getting more links to research from Allison) it seems that even some normal people can have raised antibodies levels. That didn't seem to be the impression the doctors were giving us. It is all very odd.

So now Jake is taking very high doses of steroids daily, which have no effect on his chronic pain, but have caused him a lovely array of side effects... like being hungry/eating all the time, not being able to go to sleep until the wee hours, and easily getting irritated. Fun times.

He has an appointment with the doctor on Friday and with all the research we've been doing on our own, we have some theories we will be discussing with him. I hope from there we can finally do something to get him better. This is just getting ridiculous.

I love you, Jake. <3 Thanks for all you do to help me out. :)

I got a tattoo!

It's a really small one, but still....

Let me start from the beginning. So I went in for my simulation today. I walk into the office and nurse Steve sees me and is like "Oh good. Follow me. I'll start your IV." What? IV? Why am I getting another one of these stupid things. Turns out they wanted to use contrast with my simulation to help them map better. Great. Steve started an IV in the top of my hand, my least favorite spot, and I was ready for the radiation therapist. She led me back to the CT scanner room and I got dressed into a hospital gown. She taped wires along my scar lines (including the one on my tongue) so that it would show up in the scan.

Then the spa treatment began. I laid down on the scanner table and was given a warm blanket to make me comfy. Then they placed this bolus (kinda reminded me of ballistic gel) on my neck area. This was to add a imaginary layer of skin above my regular skin so that the radiation beams would be able to be increased at my skin/scar line. After cutting the bolus to the correct shape, they pulled a bust shape plastic mesh out of warm water and put it on my face. They pressed it to the contours of my face and snapped it down to the table. As that cooled and hardened, the radiation therapist put metal dots on the mask so that could show up in the scan as well. She also marked a small dot on my chest with a sharpie to line me up with the centerline of the machine.

I then got a quick CT scan, had contrast put in (and got weird warm feelings...eww), and had another quick CT scan.

The therapist came back and removed the mask, bolus, and wire tape. Then I got my tattoo. ;) That sharpie dot became a real tattoo as she got out her India ink and tattoo needle. This helps them have a permanent mark to make sure I am always centered in the machine correctly. It actually didn't hurt at all. I've been strongly considering getting a tattoo in five years when I finally get the "cancer-free" label. Maybe it's really not that bad of an idea. :)

I then met with Dr. Nguyen to ask my billion questions and sign the paperwork saying I would let them radiate me. I think "What is radiation therapy?" deserves a whole other post. So I will save that one for later.

Well, that's all for now then. I'm going to go stare at my tattoo freckle. Ha.

Happy Hanukkah!

To all of Jake's relatives out there (and any other Jewish people reading my blog), I wish you all a happy Hanukkah. Due to Jake's hospital stay last weekend and my ridiculous amount of doctor visits this past week, we only got a chance to begin holiday shopping today. I'm assuming we get an 8-day window to have gifts arrive, anyway.

Speaking of holiday shopping, for any of you out there reading this that haven't finished your shopping yet, and are planning on doing any on-line, please access Amazon through this link. Using that link gives the Oral Cancer Foundation a few cents for every purchase you make. Over time a few cents here and there can really add up and help others like myself. :)

Ode to an MRI machine

So I had my first MRI session this morning. The tech asked what I was there for and when I told him I was starting radiation treatments, he said we'd get to know each other well. I guess the ROs typically order a few MRIs throughout treatment to see if things are changing. Great.

The MRI, CT, and PET scans are all so different. Honestly, even though this one has me in the machine the longest (~45 min), it's probably one of the easiest. The CT contrast stuff gives you crazy weird warm sensation that makes you feel like you're peeing yourself. The PET scan injection makes you radioactive for a while and requires a long wait time after being injected before you're allowed to hop in the machine. The MRI with contrast still required me to get an IV, but I didn't have to do any weird fasting ahead of time and as soon as I put all my belongings in a locker, we were ready to go. The machine is pretty loud though and even though I had some nice Miles Davis going this morning, all I could hear was the beeping and clicking of the machine. Here is an example of what the machine sounded like (imagine the staccato notes more like clicks):

I told the MRI tech that he needed to write music that was in the same key and tempo as the machine so it wasn't so distracting. I think he thought I was crazy.

After the MRI I got stuck with needles two more times (my vein decided to roll away from the first stab) so I could give a blood sample for approval for anesthesia. I then went and got an xray (again for anesthesia approval). I showed up to work 30 minutes later with blue bandages around both arms. What a sight!

Today I am very thankful for working for Raytheon. They have a program called Supplemental Intermittent Absence Pay (SIAP) where you can get approved to get paid for doctor appointments, radiation treatments, chemo, etc. and it doesn't have to come from my normal Paid Time Off (PTO) bucket. I had not anticipated all these appointments before treatments would begin and with only .5 hours of PTO left for the year, I was starting to stress out about how I'd be able to work all my hours this week. I knew I could apply for FMLA but there was so much paperwork to fill out for that. I spoke with the Raytheon nurse in charge of SIAP today and was approved for all my appointments this week and the three next week. Once I have my finalized chemo and radiation schedule, I'll be getting approved for those as well. It is times like these I am very thankful to be working for a company with such great benefits. :)

I guess that's all for now. Here is an updated schedule of my upcoming appointments:
12/14 4:00pm - Radiation Simulation with RO
12/15 8:00am - Finalizing Chemo treatment plan/contract with MO
12/16 afternoon - Port insertion surgery with SO
12/21 (tentative) - treatment begins

chili, cheesecake, and chemo...

The chili and cheesecake is what I plan to have for dinner (in addition to my glutamine enhanced ensure..yum).

The chemo is the topic of this post.

Tonight I went back to the chemo doc's office to meet the surgical oncologist, Dr. Ong, who will be placing my port next week. It's a pretty simple procedure, but it's technically outpatient surgery, so I had to sign all these forms and have to go get an xray and bloodwork done to get the ok for anesthesia. He said I could opt to stay awake for the surgery and they'd just really numb my chest. I said "no thank you!" I hyperventilate when they draw blood... I don't really think it'd be wise for me to be awake for inserting a tube into my chest! I guess there is also an ever-so-slight risk they could puncture a lung when inserting it. I asked Dr. Ong how many times he's punctured someone's lung. He said once out of the 4000-5000 ports he's inserted in his career. I guess that is pretty good odds.

So, what exactly is a port you ask? A port is a catheter inserted below the clavicle just under the skin, that then runs to the superior vena cava, just above the heart. It provides quick access for the nurses to insert the chemo drugs or fluids, while keeping out of the way the rest of the time. Here is a picture of one, as you can see, it's not that big.

The nurse said it'd probably be sore the first couple weeks after it's inserted, but I still think this was the best option. I can imagine how crappy it would be getting an IV inserted every week (or more if I end up needing fluids at some point).

I finished my reading on cisplatin. Chemo drugs are so interesting! I don't know who came up with this, but they're geniuses! So basically cisplatin is made from platinum and the metal goes into DNA that is dividing and binds to it, so that it can't continue dividing. When that happens the cell dies. Cancer cells divide rapidly, which makes the chemo work so well against them. It also starts to kill off other rapidly dividing cells, like marrow and hair follicles. For some reason, normal cells are able to bounce back after chemo treatment is finished, but cancer cells do not.

The short-term side effects from my chemo will mainly just be nausea; however, it will also increase the effectiveness, and therefore side effects, of the radiation treatment by ten-fold. Yuck! (I will post all about radiation next week). The only other things might be a thinning of my hair and I'll stop menstruating for a couple months (sorry if that was too much for some of you.)

The long-term side effects are that I'll probably hit menopause a few years early and there is very slight a risk of a 2nd cancer because of it. The thing is, these 2nd cancers tend to show up 20 years later and for most people with cancer who are diagnosed in their 60s or 70s, 20 years later isn't that big of a deal. Even so, not doing this treatment would almost certainly lead to another recurrence and then I won't even get the option to see if something shows up 20 years later.

As long as I'm being a downer, I got to see the chemo infusion room today. It was just wall-to-wall recliners divided by half-walls with mini tvs and magazine racks and homemade afghans, with IV polls behind them. It was late when I was at there so no one was getting treatment done, but I could just imagine the chairs filled with sick, elderly folks getting chemo dripped into them with me sitting across the way. It was sort of this depressing image, but hey... at least they have tvs. :\

I'm meeting with my MO on Tuesday at 8am to finalize my treatment plan. I ran into her for a few minutes again today. She said she'd been thinking about my case and might give me 3 big doses across course of treatment instead of the 6 weekly ones. She had some case studies she'll go over with me on Tuesday and from there we will decide what we think is best. She also reiterated that I had nothing to fear because I was about the best chemo patient possible. I have healthy marrow and no other health conditions. I have the best shot of making the chemo effective.

Well, the chili is done simmering. I think it's time to eat. Until next time.... :)

I couldn't eat another thing, not even a mint...

So this whole diet thing is just crazy. With my low metabolism, I have found that eating more than about 1400 calories a day causes me to gain weight. In recent years when trying to eat UNDER 1400 calories I always fail miserably, yet now that I'm trying to bulk up for radiation and chemo, I'm finding it very hard to eat much OVER 1400 calories. I'm actually starting to just get sickened by the thought of eating or large quatities of food.

That being said, for all of you out there wondering what the doctor has me eating...

In addition to whatever normal food I can handle from now until the end of treatment:
***6 bottles (1500 calories-worth) of ensure (right now I am only doing 3 since I'm so full all the time and am still eating regular food... I'm going to double-check that that is ok on Monday.)
***15g of L-glutamine twice a day (180 calories total) - helps with GI heath and provides nitrogen as if I had 36g of protein
***2000mg of fish oil twice a day (40 calories) - helps increase appetite, full of omega 3
***2 Tbs honey swish three times a day (360 calories) - from now until treatment I'm just doing one of these a day to get used to it, but once treatment starts I'm supposed to do it 15 minutes before radiation, 15 minutes after and 6 hours after that. I've been reading a bit about the curative properties of honey and some of the research out there is pretty amazing. I actually have a coworker, Liz (who is just the sweetest lady you'll ever meet), and she is a beekeeper outside of work. She brought me a jar of honey today and I am very very excited to have some homemade stuff. She's told me about how it helped other people with some pretty nasty wounds, so I hope it'll be just as effective at preventing wounds in my throat.

Well, despite being super full, I should head off to bed. I have a bottle of barium waiting for me at UMC for 7:45 tomorrow and I want to be well-rested. ;)

check, check, check...

Dishes... check. Laundry... check. Groceries... check.

Ok.... so I guess I learned my lesson. No more blogging about chores needing to be done. I think I got about 4 or 5 offers of people to come live with us for a while and help out with our chores and/or hire us a maid.

I went home yesterday for a couple of hours and managed to clean all the pots/pans in the sink, do four loads of laundry, take care of the grocery shopping, play with the dogs, and eat twice. The only things really left to do are vacuum (and Jake bought me a Roomba for our anniversary, so the vacuuming pretty much takes care of itself) and the yardwork (and at this point I really should be hiring someone to fix all our landscaping, but I don't know when the best time of year is for that. I could handle most of it myself, but it's annoying doing gardening when cacti are involved. I wear super thick gloves, but I still manage to always get little pricklies in my hand).

That being said, I'm sure there will come a point when it would be nice to have someone come and stay. When that time comes, you'll know.

Also, I do have a husband back at home. Now that he's on high doses of steroids for the next two months, hopefully he'll have extra energy and much less pain, enabling him to help out with the chores.

Going back to my checklist:

Dentist approval... check.
I spoke to the dentist this morning, who said I saw him recently enough and I was clear to begin radiation treatment. I then called the RO back and scheduled by simulation for Monday.

Baseline hearing test... check.
My hearing looks perfectly normal. The only thing that was not normal was I didn't have appropriate contralateral responses (what the opposite ear responds with when a loud noise is played in just one ear). This could very likely be a temporary thing because of the recent surgery (it implies something is messed up along my 8th cranial nerve) or I could just never have had good contralateral responses, some people don't.

Initial consult with the Medical Oncologist... check.
So, once Jake was FINALLY released from the hospital around 3 (he finished his last treatment around 10:30. Hospitals are so slow with paperwork. :\), I got a call from the MO office saying that Dr. Kratz could fit me in at 4:00 if I could make it there on short notice. Jake and I decided to go since we didn't really see the point of going in to work anymore.
I will for sure be having chemo in conjunction with my radiation treatments. It seems I will be getting low-dose chemo every Monday morning, immediately followed by radiation treatments. Then Tuesday-Friday I'll just have radiation treatments. The whole thing should probably start in two weeks, so 12/21. Merry Christmas to me! That should last 6-7 weeks. Then we will review the situation and I might get an additional three doses of "mop-up chemo". Dr. Kratz didn't go into a lot a details about that, as it would really depend how things are going by that far into treatment. She gave me some reading material so I can learn all about Cisplatin, my chemo drug of choice. I'll have to write a summary on that for you guys later.

So on my to-do list for the next couple of weeks:
12/9 7:45am - Swallow test
12/9 4:00pm - Baseline bloodwork for chemo / consult with PORT placement person
12/11 7:30am - MRI
12/14 4:00pm - Radiation Simulation Session
12/15 TBD - Making a contract/schedule with the MO
12/? (sometime 12/10 - 12/18) - PORT insertion (I have no veins in my forearms, so I had the option of getting a PICC line, which would stay on an armband on my upper arm during the course of chemo treatment...or...a PORT, which they knock me out for and insert under my skin in my chest. As long as I'm not wearing a super revealing shirt, no one can see it. I opted for the PORT).
12/21 (tentatively) - Begin chemo, then radiation treatment.

I can't even remember what it's like to be "normal"

I'm tired. I haven't been sleeping well these past couple of nights, and aside from the fact that my constantly-full stomach makes it harder to sleep, my health issues have not been the reason I've not been sleeping.

It's been lonely the past two nights and hard to get to sleep when I know there are so many chores to take care of. Jake has not been home. Jake decided to opt for treatment for his Hashimoto's Encephalopathy by admitting himself to the hospital on Friday night to begin a 3-day course of high-dose IV steroids. This treatment is supposed to relieve all symptoms in 1-3 days. As Jake sits in front of me getting dose 4 of 6, without much sign of improvement, we begin to worry that the HE may not be what is causing the pain. Fingers crossed that he begins to see some improvement soon.

I want to be there for my husband while he's in the hospital. I know how boring and lonely hospital stays can be, especially when you feel fine, but are confined there anyway. I have so many other day-to-day issues to deal with, though, it's hard to be there as much as I'd like. There are dishes piling up in the sink and laundry that needs washing. The dogs are being neglected and it seems like with my diet, I have to keep leaving to go eat something. I need to go grocery shopping and vaccumm and clean up the weeds in the front yard.... It's so hard trying to maintain a routine when you see doctor's offices and hospitals more than your own house.

Also, with the five appointments I need this week and the fact that I have a mere 1/2 hour of paid time off left for the rest of the year, I need to do work this weekend to make up for the hours I'll be missing this week. *sigh*

Well, my husband is bored, so I think it's time for another game of King's Corner....

is it weird to be excited after meeting with my radiation oncologist?

I had a good meeting today with my oncologist, despite the fact that none of my records got sent to him and he had no warning that I had had a recurrence, even though I called weeks ago to let them know for this appointment. :\

My RO is an associate professor at the U of A school of medicine, in addition to being associated with the comprehensive cancer center here in Tucson, the only CCC in all of Arizona. His research is in Head and Neck cancers and in recent years has been focusing on younger patients. He said he had sort of expected this recurrence in me, which is why he had had me stopping by for checkups every few months even though he had not recommended radiation the first time around. He says these cancers in young people tend to be very aggressive and that is why. He went over a lot of the side effects of radiation, the basic areas that will be treated, and all the appointments I would need to have done before I could even begin.... So, within the next week I will be seeing:
1. The Dentist - I need to get his ok, before I can even schedule treatment. Apparently, any dental work that requires teeth removal, ever, after radiation treatment could cause my jaw to shatter. The dentist has to do any potential dental work before I begin radiation.
2. An MRI machine - my RO wants to image my head and neck to see if he can find any source for this recurrence. It is odd that it moved sides, so he's looking for a possible point of origin. The PET/CTs I've had before only show the cancer if it's larger than 7mm. The MRI should be able to show smaller areas.
3. My ENT - I have to have a baseline hearing test, as radiation treatment possibly could damage my inner ear.
4. A bottle of barium - I have to have a baseline swallowing test, by drinking barium in front of an xray screen (cool!).
5. A Medical Oncologist - My RO strongly recommends chemo in conjunction with the radiation treatment, as in the studies he's done with my type of cancer, the chemo can increase my chance of 5-year survival by 15-20%!

After those five appointments, I will return to see my RO. I will then begin creating a mask and doing the simulation to set up my treatment plan. They will be radiating both sides using Helical tomotherapy, a new, advanced form of IMRT, only available at a handful of hospitals. It is very good at targeting specific areas and avoiding healthy tissue. They will be specifically avoiding my larynx and my right cheek (in order to save one of my major salivary glands).

The part of my appointment that made me the most excited, though, is that Dr. Nguyen has been researching the most effective diet for helping people to maintain nutrition during treatment and avoid needing a PEG (feeding tube). Many cases I've read about have the PEG installed before treatment even begins, since once you actually need it, it's too late to have it put in effectively. My RO said this was going to be like preparing for a marathon, so for the next week or two before I start treatment, and then for as long into treatment as I can, I have a list of about 2000 calories worth of nutritional supplements to add to my normal diet. I can't imagine losing that much weight during treatment, that I need to try to put on that much.... but I will listen to the doctor. I soooooooooo want to avoid getting a PEG. The whole idea of it just sounds miserable. For some reason, I understand the effects of radiation and chemotherpy, yet the part I'm dreading the most is the PEG. Ha! I'm very glad to have a good chance at avoiding one.

It's getting late, so I supose I should get going to bed.

I'm actually in a good mood tonight. I think Dr. Nguyen is just what I needed to "Nguyen" this fight against cancer, once and for all. :)

sometimes it's the little things in life....

Just a quick post before bed so people know I'm doing better than the depressing post this morning....

I am amazed at how many people truly care about me. Jake has been exceptionally nice to me today; he even took care of emptying the dishwasher before I got home. I have coworkers who look out for me and one who even told me I'm like Chopin (I guess b/c he was able to turn his depression from having Tuberculosis into beautiful music). I have friends who I haven't spoken to in a couple of years send me flowers (Thanks Janice! It made my day, really). And I have others who just send me emails letting me know they've been thinking about me.

It may all be little gestures but when added together it really helped to turn my day around. Thanks to everyone! You guys are the ones who make me strong. I love you all. <3

Good night.

even if the glass is half full, you can still be thirsty

I'm going to be brutally honest. This is probably not the post to print out for Grandma.

Last night was rough. We had just gone to bed and Jake said something offensive. I rolled over to ignore him, which normally would have been enough. Any other night and I would have just fallen asleep and woke up this morning in a great mood..... But it wasn't any other night. I think things finally clicked. I started crying....and crying... and crying. Then I stopped. Then I started again. An hour later, when I was into a full-fledged sobfest, it finally came out, "I have....only....a fifty....fifty.....chance....to survive....survive...five years." It went on with me babbling for a while and saying mean things to Jake. He was great though. He held me and told me he loved me and would be with me for this journey. What a fun way for him to spend his birthday. :\

I woke up this morning with puffy eyes and in low spirits. I decided to Google survival rates to see how far off I was....the results were not very good.
It seems before this recurrence, I had about a 60-80% chance. Oral cancer has one of the highest rates of recurrence, about 50%, but it usually shows up in the same side lymphnodes. That's why they removed all the ones on my right side back in Oct 2008. I was in the less than 10% of folks who get it on the opposite side, go figure.
So, now that I had a recurrence, and the lymphnode was on the opposite side of my neck, I think this puts me at a StageIVa, T2N2cM0.

And that gives me a 37% chance at 5 year survival.

37.

Not even a 50-50 shot.

I've always been so optimistic. I generally get a lot of comments about how strong I am. I know those statistics are for people who were treated 10-15 years ago. I know medical technology has improved since then. I know I have a better shot because I'm young and "healthy". I know I have a great team of doctors.

Still, even if I see the glass as half-full, I can still be thirsty, can't I?

oh how I miss you, left cranial nerve XII...

Achoo! Great, there goes snot all over my hands again... For some reason, ever since surgery I've had a really hard time sneezing correctly. Every time I do the stuff goes everywhere, not just a little area of my hand or a tissue or whatever.

I decided to Google it. Turns out that neurons connected to cranial nerve XII "regulate the reflexes of vomiting, sneezing, swallowing, and coughing." Well, my other nerves are not compensating nicely on this one. I'm tired of making such a mess when I sneeze. Swallowing has improved considerably, except when I'm laying down. I guess it's harder when I don't have gravity aiding me. *extra gross alert* Also, I had to go out and buy a tongue scrapper because my tongue isn't moving around enough to adequately remove all the food particles off the back of my tongue. Yuck. *end of alert*

Also, I'm still having difficulty speaking clearly, drinking with a straw, and eating at a reasonable speed. Last night we went out to a mexican place for Jake's birthday (his actual birthday is tomorrow, but we decided to go out on a Saturday night instead). First I had to repeat my order a couple times. I wanted a "eso enchilada with hreen sauce" (queso enchilada with green sauce). Then my frozen margaritta came with a straw in it and I couldn't drink it. Then we were there forever because it was taking me so long to eat. *sigh* I guess on the upside, I have some yummy leftovers for tonight.

Yes, I am continuing to make improvements, but I still wish my cranial nerve hadn't gotten damaged to begin with. :\

mmm...turkey, stuffing, cranberries, and ... pizza?

Happy Thanksgiving, everyone!

It has been quite a day. Jake and I were at his Aunt's place most of the day for the Thanksgiving celebration. The food and company were great, but I kept telling Jake I felt like I should have made myself a t-shirt that said "I feel fine, except for my speech. Please stop asking" or something. I guess people don't expect you to be back to normal after such an intensive surgery and then when they ask how you are and you say "I'm hood"....it kinda makes them wonder. It was also a little embarrassing to be the last person finished eating out of about 40 people....even those who got 2nds and 3rds. People probably thought I was eating a lot, even though I didn't even completely cover my plate with food, oh well....

On the up side, because I eat so slowly, I didn't overeat for the Thanksgiving lunch and when we got back to Jake's mom's place I got to have leftover Giordano's pizza....mmmmm.....

All in all, it's been a great holiday. I suppose it's about time to call it a night. We have an early flight in the morning back to Tucson. Good night. :)

babushka!

My mother-in-law just got back this morning from a trip to India and brought me back a scarf. :) What a fun way to protect my newly acquired scar from the Arizona sun.

I have begun to realize I am acquiring a scarf-collection that would rival a Russian grandma. What's cool, though, is that I have unintentionally been collecting scarfs from all over the world for the past few years. It all started in college, when Jen brought me back this neat one from Ecuador. Next, I bought myself a pashmina in Italy on the trip with my mom and sister. Then Beth went to Ireland and got me one this past summer. And now I have this beautiful new one from India.

So, I guess if any of you are planning on leaving the country, please bring me back a scarf. Brownie points if it's from a country that starts with a vowel. ;)

long scarf

You ask me to take off my scarf

And sit down and rest for a while?

That’s sweet of you--but before I do,

I’ll tell you a story, my child.

Some years age I fought a duel

With the Count Doomandread,

And I slipped or tripped

And his sword just clipped

My neck--and sliced off my head.

I scooped it up and put it back,

But it didn’t quite connect,

So I tied this scarf around it

Just to keep it on my neck.

That’s why I always keep it on,

‘Cause if it did unwrap,

This wobbly chopped-off head of mine

Might tumble in your lap.

So now you’ve heard my tale, and if

It will not make you ill,

And you’d still like me to

Take off my scarf…

I will!!

~Shel Silverstein

Hashimoto's en-snuffleupagus

I am just going to start by saying how much I hate human's lack of understanding of statistics....

Here I am with some form of cancer that affects old, chain-smoking men.... Then it jumps from the right side of my head to my left, which "never" happens. Then I find out my good friend has this weird disease, Hashimoto's Encephalopathy, that is diagnosed in patients about a dozen times a year or something ridiculous. THEN, I go with Jake to the neurologist this afternoon and he also has Hashimoto's Encephalopathy????? Is there something in the water in Tucson? What is going on?

For those of you who don't know, Jake, my husband, has been dealing with unexplainable chronic pain for the past 2.5 years. It started in the back of his legs when sitting, then traveled to his back, and makes it so he is uncomfortable all the time. It got to the point where he couldn't even sit to play video games. *gasp* He's seen countless doctors with various specialties and just recently wound up in a neurologist office. The neurologist ran some tests and this afternoon we found out that the only abnormality in the entire batch was that his Hashimoto's antibodies were 10 times the normal level. Apparently they are attacking the neurons in his brain, causing him pain. The good news: If that's what it is, then the steroids the doctor gave him should have him feeling better in a week. The bad news: If that's what it is, then continual steroid treatment should make him gain weight and/or a hunchback and the other treatments are experimental and invasive.

Allison, who has known she has HE for about two weeks now, presented with numbness, dizziness, and migraines. The symptoms are very different, so it is all so weird.

All that being said, Jake and I have safely traveled to Illinois tonight, where we will be spending the Thanksgiving Holiday with his family. All I have to say is I'm happy to be drinking Illinois water again, instead of that rare disease-inducing Tucson stuff.

being young gives you xmen-like powers...

A quick post before I leave for work this morning, with two more tidbits from yesterday's appointment...

First, when speaking to the doctor about upcoming radiation treatments and what areas would be targeted, he explained that since the first cancer, last year, was well-contained and had no lymphnode involvement, there didn't seem to be a reason to radiate that area. It was this left side and the lymphnodes that were crazy-aggressive and needed to be hit. That means no radiating of the oral cavity and a good shot at keeping most of my taste and salivating functions. Horay! I still have to talk to my RO about that choice, but that seemed to be a knowledgeable response.

Secondly, I told my doctor that I had just starting getting zapped by the nerves lining up again after surgery and his response was something like "Already?! Wow, that's fast! I guess being young makes you like an xmen."
...
...

hmmm..... my cells did go through a bunch of crazy mutations....
...
...

got to go. ;)

Nov 23rd email to some family and friends

I know I said I would start just posting to this blog, but I did send out an update email this morning to some family and friends, letting them know how this morning's appt. went and about the blog. So I will copy most of that below:

"Dr. Hayden's colleague removed my stitches this morning and we discussed the pathology report and my future treatment plan. The pathology report showed clear margins and the main cancer was contained to the one original lymphnode area. As the team had gathered, the cancer in that lymphnode had sort of exploded causing the lymphnode to "burst" and spread/surround the submandibular salivary gland and 12th cranial nerve that extends into the muscle at the base of my tongue. It also seemed to have slightly effected one other tiny lymphnode. The remaining dozen-some lymphnodes that were also removed were all negative of cancer and that cancerous node/gland/nerve/muscle mass was cleanly removed with negative margins. All in all, the surgery was a success.

Going forward, I will be meeting with my radiation oncologist on 12/4 to develop my treatment plan. Due to the rarity of my cancer conditions, the Mayo team thinks that it might be wise to talk to a medical oncologist (chemo doc), as well. It'll be a personal choice with that one as the benefits and unpleasantness of treatment almost outweigh one another.

The radiation treatments will begin in 2-3 weeks and last for 6-7. This means I doubt I'll make it to IL for Christmas. We'll just have to plan for a separate trip in the Spring. :) I got the ok to fly to IL for T-day, but was just told to keep it easy."

I just returned home from Phoenix and am picking up an ensure and heading out to work. Until next time then... :)

I feel loved

Two of my good friends from work, Allison & Alfredo (and Allison's dog Miso) came by tonight for dinner. They brought Jake and I nice soft food (slow-cooked chicken and mashed potatoes), which still took me over an hour or two to eat. They also brought some beautiful 'get well' flowers. Allison has been going through quite the medical drama herself, lately, yet here she is spending the afternoon making dinner for me. I feel loved. <3

Well, I think it's time to call it a night. I have an early appointment in Phoenix tomorrow, so I'll have to get up by 5-something. Yuck.

Good night. You know....I'm really starting to like this whole blog thing. :)

random thought #1

Ever since I was diagnosed with cancer I keep having flashbacks to Mrs. Mullins's 9th grade English class and one particular journal entry. One day we were asked to write about: "If we had to lose one of our senses which would it be and why?" I remember writing (as an overweight high school freshman girl) that I would give up my sense of taste because then maybe I wouldn't eat so much.

Little did I know there would come a point in my life where I probably will lose some of my sense of taste, if not all, for at least a short period of time. It's a scary thing actually thinking about losing my sense of taste. I really love cooking. Planning menus and making dinner each night is a stress relief. I'm an excellent baker (ask some of my coworkers who love when I bring in cookies). I hate the idea of not being able to enjoy one of my favorite hobbies.

That being said...looking back, would I have changed my journal response? I love music more than anything, even cooking, so sense of hearing is completely out. Sight is so important for just my normal day-to-day activities. I feel like that is far too important of a sense to give up either. Smell might be a good option, although, it seems to be a good, built-in, safety feature...being able to detect when the milk goes bad, if there's a gas leak, etc. Also, smell has so much to do with taste, I think I'd lose my enjoyment of food with that one, as well. Finally, touch seems like an even better built-in safety feature, sensing if something is too hot or too cold. I'd miss my doggies licking me in the morning or hugs from my husband. It's weird enough now when he lightly brushes my check and I can't really feel it (my nerves were somewhat damaged from the first surgery). It's almost like that creepy crawly feeling you get when then dentist numbs your mouth and your lips are all weird for a few hours....except it's like that all the time for me. Some of the connections didn't line up quite right, either, so if I brush my cheek, I feel it in my neck. Very weird.

So to answer Mrs. Mullins, I suppose I would still opt to lose my sense of taste....but why would you make anyone ever have to choose?

trying out this whole blog thing...

Well, I decided this morning while lying in bed that it might be a good idea if I started a blog. I've been trying to keep a lot of people updated about my medical conditions and continue to get cards from all over the country of people I haven't spoken to in years wishing me well. I kept thinking....if only there was an easy way to keep everyone up-to-date with how I'm doing, especially over the next few months with radiation treatment. That's when it occurred to me....why not start blog.

So, I'm going to try to post to previous dates by copy/pasting from past emails I've written to folks. Then going forward, I will just try to make entries here.

Thanks for listening!

Nov 20th email to Chris (coworker)

"I finally am home. The doctor didn't release me until this morning. I really hate those drains. I feel pretty good now, other than being a little tired, the speech and the swallowing thing. My tongue doesn't quite have the mobility it used to. I am having a hard time eating still. I managed some soup and ice cream for lunch today. It still looks like I'm going to be able to go up to Illinois for Thanksgiving a few days next week, so I really hope I can eat more by then.... especially with radiation treatments starting probably before Christmas. I want one good meal before the ensure meals start.

I think the scariest thing was this morning when the doctor said to me something to the effect of 'you know we really want you to undergo radiation treatments this time. The last time we avoided it because we wanted to maintain your quality of life for the next 20 plus years. Now with the aggressiveness of this cancer, we're just trying to make sure you survive the next 5.' Yikes!

Well, like you said I just should be happy with what I have left.

I'm just so happy to be home at this point. I'll be at work probably Monday afternoon and Tuesday morning, but since you're on PTO I guess I'll see you the Monday after Thanksgiving.
You can help out by not laughing when I ask you a question about the "aye-sow ouher imbal status". Ha!"

Nov 20th email to Jake

*Subject: The tube is out!*

7:12am: "The doctor said to give the nurses a couple hours to get the paperwork filed.

Maybe in Mayo terms that means be here by noon. Ha!

I'll give you an update when I know more."

--------

9:20am: "Update. I'm back in my street clothes and the nurse gave me this shampoo cap, so I'm not so gross anymore.

She hasn't gotten any of the paperwork yet, but said she'll let me know when she does so I can give you the heads up to get here."

--------

9:44am: "The nurse just stopped by and said she had the discharge order from the doctor and should have the paperwork done by the time you get here.

So go ahead and leave [the hotel] now. I'll see you soon!"

Nov 19th post to OCF forum

"I think it's time for another update... This morning I am typing on my phone from my hospital bed. I really hope I can go home today. I just hate hospitals and miss my doggies and my husband being around all the time. (He's staying at a hotel, because he just can't sleep in the hospital chair.)

Anyway, despite the pain in my jaw getting quite a bit worse, I held off until 11/16 for surgery. There were many delays and I ended up not getting back to surgery until 4-something. Despite what was supposed to be a simple left neck dissection, it ended up being much worse. After removing the lymphnode area, the doctor saw that the cancer had spread into the base of my tongue and my 12th cranial nerve (hence all the pain in my face lately). They had to sacrifice my nerve and they removed some of the BOT. My speech is pretty bad. Supposedly, it's supposed to get better with time, but without that nerve, I know my speech will never be normal.

It looks like radiation treatment will be coming up in about 4-6 weeks. I'll see my surgeon Monday to remove my stitches and give me the final pathology. I also have an appt. with my rad. oncologist on 12/4.

I guess at this point I'm just looking forward to getting out of the hospital and hopefully getting to keep my plane tix to fly to IL to spend Thanksgiving with relatives."

Nov 18th email to some family and friends

"Well, Dr. Hayden's team stopped by early this morning (and actually woke me up). I'm doing better. My speech is improving, although they are sending in a speach therapist later today for an evaluation. They had to sacrifice my 12th cranial nerve which will permently have an effect on my speech, although hopefully just slight.

I'm disconnected from all machines as of last night. In the last 24 hour I ouput 35 ccs to my drain. I need less than 30 to be released. Signs are looking good that I'll be going home tomorrow.

I asked about Thanksgiving. They said no heavy partying, but I should still be able to go to Illinois. I'll have to have my stitches removed Monday or Tuesday and we'll review my pathology report, but they should still give me the ok to take the flight.

I look forward to getting out of here and to seeing many of you for Thanksgiving."

Nov 17th pm email to some family and friends

"The doctor finally stopped by. He is in an all day case today, so he just had a chance to step away.

I guess the cancer was much more aggressive than they had thought. They removed the lymphnode and salivary gland and found the cancer had spread into the base of my tongue and my nerves in that area....explaining why I had developed some nerve pain in weeks past.

They went ahead and removed part of my tongue and nerve which is why I've been having difficulty talking. It might take a while for that to come back again.

It seems radiation treatment is pretty much definite at this point but we're still waiting up to 5 days for the pathology report.

It looks like I have another 2-4 days left in the hospital depending on the drain.

I'll get another followup with Dr. Hayden tomorrow morning and I'll let you guys know how that goes."

Nov 17th email to Amy & Gina

"Amy & Gina (or should I say Jina)

I just got your guys' teddy bear & balloon.

I think it's a little small to sit on its lap, but it's nice to look at and made me smile this morning.

Still no visit from the doctor.... But I'll keep you posted."

Nov 17th email to some family and friends

After accidentally hitting send before typing a message the first time...

"Sorry for the double message guys. It's hard to type on my phone with the pulse-ox meter on my finger.

So I just wanted to thank you all for the well-wishes and support. There were quite a few delays yesterday and I ended up not making it into surgery until 4:00ish. Then during surgery they found some slight involvement with the base of my tongue, which made the surgery last even longer. By the time I had a room it was after 11:00pm!

I'm doing ok now. It hurts a bit to swallow or turn my head too much, but other than that I don't seem to be in much pain. I'm having a bit of difficulty talking, which I assume has to do with the base of tongue issue.

Dr. Hayden will be stopping by sometime today and then I'll send out another update.

Thanks again for all of your support."

Nov 3rd email to mom & Beth

***I had a POME (Pre-Operation medical exam) at the Mayo clinic back on Oct 30th. I told the doctor about the nerve pain in my face and she gave me a prescription for percoset...in case I needed it. I had gotten to the point by Nov 3rd, that even taking extra strength tylenol every 4-5 hours wasn't helping and I was having trouble sleeping. I decided to get the percoset and while I was in a lot of pain (b/c I couldn't take the first dose of percoset until I got home from work/Walgreens) both my mom and sister decided to call me.***

"I just want to thank both of you for putting up with my grumpy phonecalls earlier.

I picked up the drugs, came home to immediately take one and layed down on my heating pad while Jake made dinner (awwwwww.... Of course he offered to make pizza instead of the chicken fried rice which was on the menu for tonight, but the thought was there.) The drugs kicked in quickly and I am now feeling great! I'm a little loopy, almost drunk-like so I don't know how I'm going to make this work with work. Maybe I'll just take tylenol for the morning."

Oct 22nd email to some family & friends

"It all started the morning of Monday Sept. 28, when I awoke to some swelling on my neck. I had had a scratchy throat the weekend before and assumed I had a cold coming on. The next morning, when the swelling was still there, I decided to call my ENT and move up my next checkup. So, Friday Oct. 2, I saw my ENT. He thought I probably had an infection in my salivary gland and recommended some meds. We also decided on a biopsy to rule out cancer. On Tuesday Oct. 6, I went in for the fine-needle aspiration (FNA) biopsy on the lump. That's when I found out the bad news....my cancer was back. I was diagnosed with a recurrence of Squamous Cell Carcinoma in a left submandibular lymphnode. (Originally we thought it was the salivary gland, but it turns out that the lymphnode has actually just gotten so big it sorta incased the salivary gland.) A Pet scan on Monday Oct. 12 revealed the cancer was contained to just that one lymphnode area. (yay!) My ENT recommended going back to the Mayo Clinic in Phoenix for surgery. That was where I had the partial glossectomy and right neck dissection about a year ago. Unfortunately, my wonderful surgeon from last time, Dr. Kim, has moved to Seattle, so I met with a Dr. Hayden earlier this week (Oct. 20). Dr. Hayden was Dr. Kim's mentor and has been doing head and neck cancer surgeries for 31 years, so he is definitely good hands to be in. Unfortunately again, Dr. Hayden is going out of the country for a few weeks, so I am not going to be able to go in for surgery until Nov. 16th! I'm a little scared to be waiting so long, but the benefits of waiting an extra week or two for an experienced surgeon (less time in surgery, quicker recovery, less possibility of damage to surrounding nerves and muscles, less chance of missing part of a cancerous node) outweigh the slim slim chance of the cancer growing/spreading.

So....on Nov 16th I will be heading to Phoenix for a left neck dissection, where they will remove all my left neck lymphnodes and my submandibular salivary gland. The surgery should last about 2-3 hours, and I should feel back to normal by the following day; however, I will probably be in the hospital 3-5 days depending upon how long it will take the drain to clear. After the pathology report comes in following surgery, Dr. Hayden will present my case to Mayo's tumor board, who will then recommend the next coarse of action. Right now, radiation treatment is not definite, but it is a "probably". If I need radiation treatment, it will most likely be 30 treatments (5 treatments a week for 6 weeks). It will most likely take place 4-6 weeks after surgery (so late-December through early-February). Since I am young and "healthy" it is possible the treatment shouldn't be as bad. I've known cases of some 30-year-olds who manage to continuing working throughout the entire treatment. I also know cases of people who are out of commission for months, but those tend to be older patients. We will all just have to wait and see how I take it. "

Oct 22nd post to OCF forum

"I'm having a hard time being strong today. I got a call from the scheduler this morning and my surgery isn't taking place until 11/16. I realize the surgeon is going out of town and he has dozens of cancer surgeries to schedule, but I am still very uneasy about waiting so long. I called my ENT who says the wait shouldn't make a difference and he thinks I should still go to Phoenix. He says if I still am uneasy about it, he could do the surgery maybe 11/4.

The surgeon I had last year, Dr. Kim, was so amazing. He was always so willing to work with my schedule and would remember little facts about me from each visit and was just so personable. Dr. Kim got a new job in Seattle a month or two ago, so my files were transfered to Dr. Hayden, Dr. Kim's original mentor. Dr. Hayden seems like an amazing doctor/surgeon with many years of experience and recognition..... I just didn't get the same warm and fuzzy feeling with him. Now with scheduling surgery so far down the road it just makes it that much worse."

Oct 21st post to OCF forum

"Another update - so I met with my surgeon late yesterday...
Turns out it's not actually my salivary gland, but a lymphnode, although it's still contained. The lymphnode swelled so much that it sorta fused around the salivary gland, hence why the ENT had thought that's what it was originally.

Nonetheless, the surgeon is going to do a left neck dissection and remove the salivary glands and all the left neck lymphnodes. Then after surgery he will present my case to the Mayo clinic tumor board and they will collectively decide if they think I need radiation. He says right now it's not definite, but a "probably". If I will need it, he says he always recommends 6 weeks of 5 days/week treatment.

I have two concerns at this point.

1. My surgeon is going out of town and so my surgery won't be until 11/11 or 11/12 (the scheduler is supposed to call me tomorrow morning). I just hate waiting that long. Who knows what this cancer will do in the meantime.

2. My left jaw has been aching off and on recently and I don't know if that's related or not. I sorta forgot to ask my surgeon about it yesterday because it wasn't hurting at the time and I had about a dozen other questions I was asking him.

My surgeon is supposedly one of the best in the nation, so I guess waiting for him to do the surgery is my best option. I just hate the waiting part....that is the worst part of this disease....the waiting and the unknown. *sigh*

At least now I am beginning to have a plan unfold before me."

Oct 15th post to OCF forum

"Another update - I got the results of the PET scan. The only spot that lit up was my left submandibular gland. Horay! I told my husband that was the best bad news I could have gotten. I meet with the surgeon on Tuesday to discuss upcoming surgery/radiation plans.

I think my biggest fear at this point is catching the flu and having to postpone surgery. I just found out yesterday that three people I work pretty closely with are out with H1N1. My husband was sick earlier this week with some other flu strain. I'm trying hard to wash my hands a lot, but it's still a big concern."

Oct 8th post to OCF forum

"Today's update -
I met with my ENT this morning. He said I would get a PETCT, then a left neck dissection, and then most likely radiation. It all depends on the results of scans/surgery/consultations over the next few weeks. The PETCT place called at 5:45 today leaving me a voicemail that they close at 5:30 (what?) and to call them tomorrow to schedule a scan for first thing next week. The hospital called to schedule my consultation with my surgeon for the 20th. I've decided to return to the Mayo Clinic in Phoenix for this round of surgery, as they do 1-2 of these surgeries a week and my ENT says he usually does about 5 a year. After all of that I'll meet with my oncologist for the next plan of attack. At this point I'm just hoping to be home from surgery in time for Halloween. I think the fresh left neck scar and faded right neck scar would make a pretty awesome/scary Halloween costume. Ha!

Thanks to David for the CCC link. It turns out my oncologist is associated with the only CCC in Arizona. Go figure! That makes me feel a whole lot better about how this will all turn out.

Thanks to Charm for the book recommendation. That guy's story sounds awesome and would be a real encouragement during this time. I'll have to pick up a copy as soon as it comes out. "

***Side note about the book recommendation - James Beard award-winning, Chicago-based Chef, Grant Achatz is in the process of publishing a book 'Life, on the Line" about how he survived Stage IV tongue cancer and how he adapted his lifestyle and career and made it through it and is still at the top of the culinary world. There are lots of pics of food superimposed next to PETscans and things. It's due out Fall 2010. Also, I believe there is talk of making a documentary titled "Taste" about Achatz's story, as well. With my love of cooking and personal link with this story, I am very excited about it coming out.***

Oct 7th post to OCF Forums

After many replies to my Oct 6th post with kind words...support...suggestions...

"Thanks for all the kind words/support. I won't know my exact next course for surgery or treatment until I see my ENT tomorrow at 7am.

I emailed two coworkers yesterday who had known I was going for the biopsy. One is an oral cancer survivor and he gave me hug this morning. The other is a good friend and he brought me a box of cookies.

I am thankful for the support of my friends, family, and this forum. And also relieved to hear radiation is not the end of the world. How do I find out if my oncologist is with a CCC? I've been seeing one at the U of A radiation oncology department.

I'll keep you all posted after tomorrow's followup with the ENT.

Thanks again."

Oct 6th post to Oral Cancer Foundation Forums

"Well....I'm one of those typical members who disappears when things are going well. So of course after today's news, I am back.

Last Monday I noticed some swelling on the left side of my neck. Thinking it could be a cold coming on, but also knowing my history, I scheduled an immediate appt. with my ENT. He felt it was probably an infection in my salivary gland from dehydration, but recommended a PETct or biopsy b/c of my history. I chose the biopsy to get the results quicket.

Today I had an FA biopsy done on the gland which came back confirming the cancer was back. The pathologist said I'll need surgery and probably radiation. I'll see my ENT first thing Thursday and plan out my next steps.

I'm just anxious, especially about radiation. I absolutely love cooking and can't imagine what will happen to my salivary glands and tastebuds. I also don't know how I'm going to deal with missing so much work. I thought I was through this.

I'm just overwhelmed right now and needed to put my thoughts down."