Saturday, June 30, 2012

June 30 - OCD girl is hard at work over here, prepping for the adventure. I'm trying to think of things that I can do this weekend to give me a little leeway for when I get back home. Some of you posed some really good questions for me to take to my appointments on Wednesday so I wanted to pick your brains once again. Here's what I'm getting done so far:

- Get bills paid up
- Mow lawn
- Cook a bunch of soft food and stock freezer
- Clean entire house
- Clip nails on all animals
- Put together a small bag of non-valuable items to take to hospital
- Catch up laundry
- Download plethora of books to Kindle

Can you think of anything else I might want to take care of now while I'm still capable??

Wednesday, June 27, 2012

June 27 - And the fun continues. Had my pre-op with the plastic surgeon this morning and my pre-op with the hospital this afternoon. I honestly thought these would be run of the mill appointments. Say 'hi' to the plastic surgeon and have him review one more time what's going to go on, get a little blood taken at the hospital, whatever, no biggie. Ahhhh, to be so unsuspecting.........

So, first I met with the plastic surgeon's PA. She had lots of new info to pass along. It turns out they're going to need to trach me for surgery and it will stay in until the swelling goes down far enough for me to breath normally. I'm fine with this, a little slit in the throat for a number of days, I can deal. For some reason my buddy JT felt this was the most horrifying revelation yet which made me laugh. I guess we all have our different triggers!

She also told me that there is a chance they will need to split my lip and chin so they can move my face over far enough to get at the tumor. I'm sorry but THIS was MY trigger. You would think peeling half your face off is something they might have mentioned a little sooner?!? She placated me by saying if it wasn't mentioned before it's likely not going to need to be done. I now have all of my fingers and toes crossed for that, and that alone.

Meanwhile,  I wasn't really getting a good mental image of how they were going to accomplish all of this moving of body parts around so I asked her if there were some pictures she could show me of their previous work. She was happy to oblige, I'm not sure if I'm sorry I asked or not. The forearm scar was smaller in diameter than I thought it would be but I didn't realize there would be a 6-7 inch incision running up my arm where they will need to remove blood vessels as well. The neck scar isn't horrible but it isn't pretty. The picture she showed me of the chick who had to get her lip and chin split will be giving me nightmares until I wake up in ICU and am able to feel my face to see if they had to do it or not. Ugh. The tongue graft itself simply looks weird. It stays the color of the arm skin and has a different looking texture.I asked her if I was going to be able to get a suntan on half my tongue once this procedure was complete. She gave me an eyebrow and asked if I was really going to lay on a beach with my mouth open. I guess not but I thought it would be another fun fact to share with friends! ;-P

Then the plastic surgeon came in to see me. The very first words out of his mouth were "You're awfully young.". Huh? I asked "What, for cancer?". He said yes. Then I remembered the surgeon's PA on Monday telling me that I'm weird because I'm not a 65+ year old man with this particular type of cancer. Guess she was right.

So, he had me do a bunch of exercises with my left arm. I guess there are two sets of blood vessels that provide blood flow in your arm. They will be removing one set and installing them in my tongue and neck to supply blood to my "new" tongue. We discussed which leg the skin graft should come from and other sundry stuff. He then asked me if I had any more questions and I told him I was good to go. He then commented "You're taking this surprisingly well". Um, okay. Now I'm interested in how other people respond. I let myself have my 2 day meltdown and then got on with things. I can't change anything so I might as well move forward, have the adventure, and make the most from however things shake out. Right?

Luckily, the hospital pre-op did not bring to light any further surprises. I'm allowed to keep my toenails painted and I can bring my Kindle in with me because it's not considered a "valuable". So, I should be good to go. Surgery commences at 1:00 on Monday afternoon. Phew.

Other stuff:
I handed over a spare set of keys for my blog to JT. He will be posting anything of interest (such as nightmares he has from seeing the trach in my neck!) or other information that has any value while I am unable to link to the outside world.

The only bright spot to this whole thing was the 10 pounds I lost but it seems that bright spot was confiscated as well since I got into trouble for it. I'm not allowed to lose any more weight before the surgery (not sure how to prevent it, I sure as hell didn't lose the 10 pounds on purpose, it just hurts too much to eat!). Supposedly you burn 3,000 calories a day when healing so they want you to have plenty of stuff in your body to burn. That's almost a pound a day! I told them to feel free to keep me in the hospital for 40 days. Then I might finally be able to wear the Victoria Secrets bikini I bought 5 years ago!

I picked up my prescriptions last night for post surgery recuperating. There's an antibiotic mouthwash and a huge ass bottle of liquid Vicodin. I'm a little worried about the Vicodin. It was so very hard for me to say no to the refill of the OxyContin the surgeon offered me after my emergency appendectomy a year and a half ago. Now I have a huge bottle of yet another controlled substance in my hands! All I can think about is House. He popped Vicodin like they were tic-tacs! Luckily, I'm told that the head and neck have the most robust blood flow as compared to the rest of the human body. Supposedly this means that pain is greatly lessened when trauma happens. Maybe I'll only need Vicodin for a few days and then can switch back to Tylenol. If I start babbling weird stuff on here, please come over and host an intervention for me.

A warm and fuzzy about the health care professionals taking care of me: I've had 5-6 people give huge props to the surgeons who will be tag teaming me in the operating room. One person said that their relative went to NYC to get a second opinion on a procedure similar to mine and she was sent right back to Rochester because this particular team is as good as, if not better than anything NYC can offer. Dude taking my blood at the hospital today said that he has been watching these two particular doctors working together for years. He said he's seen people come in desperately ill and once these surgeons get done, he would sincerely declare it a miracle in how drastically better they are afterwards. I am super psyched to be getting so much unsolicited positive feedback about these guys!

Okay, I think that's everything. I'm going nuts over here because I can't wait for Monday to come so that I can get things underway but I'm also dreading Monday because it's going to be the start of a lot of unpleasant stuff. Wish me luck!

Monday, June 25, 2012

June 25th - Finally. Got all sorts of good information. Fun facts:

- I'll be in the hospital for ~7 days.
- I will be out of work for 6-8 weeks.
- I will be eating soft food before being discharged from the hospital.
- It will take ~3 weeks for the swelling to go down. Won't be doing much talking until then and will definitely have trouble talking. No mention of a speech therapist. I think it's a wait and see how I do type of thing.
- I will no longer have taste buds on the right hand side of my mouth. Physician's Assistant (PA) says all food will taste awful for quite a while, especially with the radiation treatments but eventually the taste of food will "normalize".
- Not definite about radiation being needed yet (but surgeon seemed pretty sure). If it does happen, it will be 5 days a week for 6-7 weeks, approximately 20 minute long appointments. I'm told it's like getting x-rays taken by the dentist but much stronger, since they're trying to kill the cancer cells.
- Most people who get oral cancer are men who are over the age of 65. PA says I'm weird (but we knew that, right?)
- ~10-12 lymph nodes will be removed. PA says it's one long incision down the side of my neck. Yay! Another scar!
- Periodic CAT scans will be needed to "keep an eye" on the enlarged lymph node on the left side of my neck.
- Humans have hundreds of lymph nodes in their body whose job it is to fight infection. Removing 10-12 of them will not affect my immune system at all.

I think that's all the good stuff. Let me know if you can think of any questions that I forgot. I will have another chance on Wednesday to ask more questions.

Friday, June 22, 2012

June 22 - My mad scheduling skills from work are coming into play with the upcoming fun-o-rama.

- My boss guy is going to go to my pre-op appointment with me on Monday and be my second set of ears. This works out well for a number of reasons, a) he's a guy so he won't be too grossed out by whatever we'll be seeing in the video we have to watch, b) he has his own health issues so feeding tubes, surgeries, scars, etc. are old hat to him, and c) he'll have a clearer understanding of exactly how much work I'm going to be missing so he can figure out if we need a temp and what should be happening in the office while I'm gone. It's a trifecta of positive!
- JT will take me to the hospital the day of surgery.
- Luke will be at my house, furball sitting while I'm in the hospital.
- Sush Guy will be picking me up from the hospital, making sure I have all needed drugs, and getting me settled back at home with my cell phone, Wii, and Kindle close at hand.

I think I'm set. Am I missing anything??

Thursday, June 21, 2012

June 21 - Doctor called again this morning. He joked that he hoped I didn't feel that he was stalking me. Guess maybe he DOES own a sense of humor. Anywho, biopsy is back. Definitely cancer. Kind of figured since the surgery is already scheduled and everything.

Tuesday, June 19, 2012

June 19th - Part II - Every time I think I'm going to have some questions answered, I end up with new questions. Ugh! So, the doctor just called. He said according to the CAT scan, I have no pathologic lymph nodes. I asked what pathologic means. He said cancerous. (Seriously, he couldn't just use the word cancerous??) I said good. So, based on what you told me last Friday, that means you can just chop my tongue out and I won't need radiation therapy. He said depends on the thickness of the growth, and we won't know the thickness until we remove it, but from what I saw, it's pretty big. Say what?? That was NOT mentioned last Friday. He said they are also going to remove the lymph nodes they found in the right hand side of my neck just to be safe. What the hell does it mean "they found", doesn't everyone have lymph nodes or are they something specific that occurs only when cancer is present?? He said there is also a lymph node in the left side of my neck that they are going to want to keep an eye on. Where the hell are lymph nodes located anyway, so now I'm going to have scars on my neck too? Thank goodness I have no interest in dating because I think I'm going to look like Frankenstein's monster by the time they're done with me! Meanwhile, who is actually going to be keeping an eye on this lymph node? I hope my primary care doctor can do this because I would really rather not have an ongoing relationship with Mr. No Bedside Manner.

So, I'm hoping that the video I get to watch next Monday answers a slew of questions. I am also going to sit down right now and start listing out the questions that I have to take with me.

June 19 - Just heard from the doctor's office.

Monday, 6/25 I have a pre-op appointment with the doctor. I get to watch a video on what is going to happen and what needs to be done for follow up care. Fun! Not. I had better take some darned good notes. Actually, I should probably drag somebody with me and have them take notes as well as a backup plan.

Meanwhile, the doctor's office will be calling me back to setup the appointment to meet the plastic surgeon. Highland Hospital will also be calling me to set up a pre-op appointment where they do bloodwork, an ekg, etc.

Chickie on the phone said that the CAT scan results are back and that the doctor will be calling me to talk about those as well.

And lastly, surgery is scheduled for July 2nd.


Saturday, June 16, 2012

Hi there! I decided to start a blog (hopefully, I'm doing this correctly!) to keep a running update on the tongue situation. FB doesn't seem like an appropriate place to be posting graphic details. Meanwhile, there are a number of people that want to stay informed and I thought a blog might be an efficient and expedient way to accomplish this. :-)

I also want to send out huge hugs to all of my friends. Thank you for listening to me, thank you for offering up a ready ear or a shoulder to cry on, thank you for offering to clean my house, to come visit to take my mind off things, to drive me wherever I need to go, thank you just for thinking about me.......I LOVE you guys!

Okay, so below is a timeline of what has gone on so far..........

Feb 2012 - Sheesh. All I did was chip a crown, for crying out loud. It had a sharp edge, it sliced up the side of my tongue a little bit. No biggie. Really.

Early March 2012 -  I had a temporary crown put it in. The cut did not seem to be healing and started really bothering me every time I ate.

Last week of March 2012 - I went in to have my permanent replacement crown put in. I showed the cut to my dentist and asked her if there was anything I could do to help it heal. Topical antibiotic, some kind of tongue guard, ANYthing. She said not really but that it looked like it was healing and if it wasn't feeling better in 2 weeks to give her a call.

First week of May 2012 - And I waited 4 weeks. My bad. Cut was getting worse rather than better. Started running a low grade fever for a few days, my right ear ached off and on and the right side of my throat felt raw. I called and made an appointment with my primary doctor.

May 15 - Sat in the doctor's waiting room for 2 hours in the middle of a work day. Finally asked at the front desk if they had forgotten about me. Nope. And there were still 2 patients in front of me. Are you kidding me with this?! On top of that desk chickie then said it would probably be just 15 more minutes. Huh? So the doctor only schedules 7.5 minutes with each patient?? Not a lot of value coming out of whatever they're charging my insurance company, if you ask me. AND this is the third time this doctor has left me sitting for 2 hours or longer. Um, take a time management class? Give patients a courtesy call? Let some of your patients go? Something? Really uncool. I asked for my co-pay to be returned and left without getting to see anyone.

May 16 - 17 - Made numerous phone calls looking for a new doctor, finally found one who was accepting new patients. Phew.

May 23 - Met my new doctor, she took one look at my tongue and told me they would make an appointment with an oral surgeon for me and I should hear from them within 3 days.

May 30 - Still no appointment so I called the front desk at the new doctor's office asking if maybe I had misunderstood something and I actually should be making the appt. on my own? Nope, no misunderstanding, they would have made an appointment for me but their new computer system had eaten my referral. They said they would start working on it right away.

June 6 - Still no appointment, called the front desk again, they gave me the phone number to directly call the oral surgeon. Got a hold of them. First available appt. was July 2nd. Made the appt. but was not happy with the wait. Went to see our HR employee, Karen, with a couple of questions about our insurance. Found out that our new insurance doesn't require a referral. OH! Good to know, immediately hopped onto the insurance website and found a different oral surgeon to call.

Meanwhile, was telling Karen that I was having some cancer concerns. I mention this because a number of friends said they didn't see the cancer card coming. I saw it coming, it's the brutal way we deal with cancer that totally floored me!

BTW: I've lost 6 pounds at this point because it hurts so darned much to eat. Got to look for your silver linings wherever you can! :-) 

June 8 - Saw the oral surgeon. Not good news. He said that he didn't like the look of my tongue at all and that he was going to personally call the ear, nose and throat specialist (ENT) to get me an appointment the following week.

June 14 - Both JT and Lisa had their hopes up for me that I would simply walk in and get this thing lopped off. They both offered to come pick me up afterwards in case I was chock full of some good drugs. Alas, it was wishful thinking.........

Saw the ENT, he said yep, you have cancer. He took a slice of the growth to send out for a biopsy but then sped things right along by telling me that I need to go in for surgery where he's going to cut out half my tongue at which point a plastic surgeon will remove a chunk of flesh from my left forearm and graft that into my mouth instead. And then skin will be taken from my inner thigh to graft onto the spot where they took a hunk of flesh. Meanwhile, if things have spread to lymph nodes, then radiation/chemotherapy will be involved as well.

Um wow.

Just wow.

Stopped in at work to give our Office Administrator the scoop because she told me to call her with deets even if I wasn't drugged. Ended up with an audience of 5-6 coworkers. When I mentioned the tongue replacement, good old JT asked if they could all vote to not replace my tongue and leave me unable to talk. Perfect timing for one of his smart ass comments since I was getting a little teary telling the peeps the news. He made me laugh instead. Gotta love him. :-)

Meanwhile, went home and got very, very drunk.

June 15 - Went for a CAT scan at 8:00 am (with one hell of a hangover!) which I think allows them to look at my lymph nodes? Unclear, kind of in shock and just going with the flow at this point.

Went to work after the CAT scan. Decided that maybe it wasn't a bright idea to give coworkers full disclosure. Was being asked off and on all day how I was holding up. Honestly, I was trying not to think about it. Although as my friend, Jen, pointed out, if nobody asked me how I was doing, that probably would have bothered me as well. It's def nice that they care. :-*

Near the end of the day I made the mistake of doing a little Googling. Was wondering about the timing of things, like how long I was going to be in the hospital after surgery, how long does it take for speech therapy to allow me to talk again, how long before I can eat without pain, etc. Ended up not finding anything about timing but learned a lot of other stuff that I would have been better off not knowing. Like the stages of cancer, the estimated survival rates of people with this type of cancer, etc. I'm sorry but at this point, a little ignorance is bliss so I will not be doing any more Googling.

June 16 - And today it's the start of the weekend. Plus I have all of next week off. I was supposed to be going to Cape Cod with my friend, Patilda but she cancelled mid-last week due to bad stuff happening in her own life. Turns out it's just as well we're not going.

So now, it's all about waiting. Waiting to meet with the plastic surgeon next week. Waiting for the CAT scan results to come back. Waiting for the biopsy results to come back.

It's also about worrying. Mostly worrying about my furballs and who will take care of them while I'm in the hospital, while I'm indisposed, if I die. There are other smaller worries but honestly, that's the biggest one. I know, I'm such a sucker for my pets, I can't help it.

So, that's where I'm at. As I get new information, I will post it here. Stay tuned.