Bad to the Bone

Good morning.  Not much new to post today about my condition except that, "YES, it is true, a tonsillectomy as an adult is NO fun!" Have actually had significantly more pain since I left the hospital than I did when I was there. Pretty manageable though as long as I take the Percoset on a schedule, and don't try to eat or speak until  it has kicked in. (Still takes me almost one full hour though to swallow a normal meal!) My friends Joy and Jenn both advised just taking the pain meds every 4 hours and not trying to go longer . . . .slept through my dose last night and may I just say, "Ouch!"  So, I am now a believer in 4 hour dosing.  This morning, I am trying to find a web forum for head and neck cancer patients where someone will compare the radiation pain to the post tonsillectomy pain . . .if you run across anything let me know. My Mommy is coming into town today --yeah! and we are getting ready for the last full week of school. Almost seems like a normal Sunday. Thank you SO much for your prayers and for adding my uncle Tom and aunt Chris to your lists as well.  If you said you would pray for me and you haven't yet . . . then save 'em all up for Tuesday and that liver scan . . .if we find nothing there then the chance of cure goes from about 25% to about 95%!  

On a completely different note.  Check out this video that Erik made of my BABY on his new  dirt bike. I can't begin to tell you how great it has been that Erik was home last week and able to keep Charlie distracted. The kid loves him some Daddy. 

 http://gallery.me.com/sparkserik#100232

Home Sweet Home!

So, my amazing husband sprung me from room 5901 at CMC today around 12:30.  Then he filled the script for 100 (yes, ONE HUNDRED) Percoset.  Life is good. I am not kidding.  I got home to meet the red-haired boy off the bus and he wasn't too grossed out at my freakish scars. As a consolation prize for his Mom getting cancer, his Dad is distracting him by getting him a dirt bike. He carries a picture of it in his pocket . . .go figure.  And, I only lost 4 lbs! Crud! 

On a more medical note, we met with both the radiation and medical oncologists as well as the dental team (trust me, it's a long story) and set up appts with all kinds of people for next week. The most important one is the CT scan of the liver that is scheduled for Tuesday (I am also getting my stitches out that day) 

The plan is pretty much as we expected, radiation for 6-8 weeks (5 days a week) beginning around the first week of July.  Chemo five days a week during week 1 and week 5 of radiation.  Normally the biggest side effect of radiation is fatigue and folks worry about the chemo a lot more.  Except . . . when they are radiating your head . . .all kinds of fun stuff in there that you need and side effects that are not fun. 1) your teeth are permanently compromised, hence the dental consult . . .they will pull anything upfront that they think is likely to give you a problem within the next 5 years . . .they don't THINK I have to have anything out but I have to have a new set of x-rays anyway. 2) radiating your throat is sort of like burning it a little every day for 30 or 40 days in a row and that means that you can't swallow . . .or eat . . .so before we start the whole adventure they will do yet another surgery to insert a feeding tube into my stomach. Yes, I know totally GROSS!  That means I can't sit in the pool all summer AND again, that I won't even get a cool weight loss program out of this because they will just be pouring the calories straight into my gut.  Small price to pay for what they now say is the very good possibility of complete cure.  Yippee!  

Thanks so much for all the notes, calls etc.  They mean everything!  Thanks too to Cathy and others for setting up the food drop off! Amazing! I may need to adjust the schedule a little when my Mom the caterer is here.  All she wants to do is cook for me :)  That's all for today. I will try to vary my posts between  "the Percoset has totally kicked in" and "the Percoset has worn off." Bet you can tell the difference . . . .

One last HUGE request.  In a horribly ironic and just wrong turn of events, my Uncle Tommy's wife Chris was diagnosed this week with a super aggressive form of lung cancer. Completely crazy for my family to be going through this with 2 people at the same time! Tom is just 9 years older than me and I grew up with him more like a brother than an uncle. You may remember that he escorted my grandmother at my wedding and said the blessing. He and Chris have been married just a little over a year and he waited 52 years to find her.  She is a citizen of Holland and her health insurance coverage is there, so yesterday they put her on a plane back there to get treatment--without him-- because he has to wrap up some things with their home, jobs, dogs etc  before he can go.  Your prayers and warm wishes have meant so much to me so please do me a big favor and add Tom and Chris to your list as well!!  Thanks so much!  I will post again soon.

Having Cancer is a lot like Getting Married . . .

Yes, I know it's a weird analogy, but it's true. You tell the same people. You worry about leaving someone out. The people who love you, LOVE YOU, not just at the cool occassions like a wedding but at the ones that really suck like Cancer where there isn't even free food and open bar. It's the same group and there is something awesome about that. My sorrority sisters have all checked in (Jill, I love that picture!) and so too my high school friends, an ex-boyfriend or two, and of course all my amazing family and those friends who really are your family (you know the people you talk to every day/week who share your life whether they are related to you or not). It's remarkable really and an amazing gift to realize just how many people hold you close to their hearts. I hope none of you ever find it out this way, but I hope you get to know it. It rocks!

Of course, with cancer, the list expands, near strangers send you well wishes and put you on prayer lists and drop off food at your house! Amazing . . .and so very much appreciated but also a little bit overwhelming . . .to the point of being a little bit funny too. . . .fair warning, I am going to offend someone with this next comment but what the heck, I have cancer I can get away with stuff I couldn't before! Here is my basic premise about visiting people who are sick. DON'T. I mean it. Unless . . . .you visited them when they were well. If I have never been invited to your home and you have never been invited to mine when we were both showered, well-dressed and well-rested then why would I want to entertain you in a hospital gown with 3 days of stubble on my legs and no sleep? I don't. Really. There are a few exceptions of course, people you work with daily, your minister . . . .but not many. For the record, I've been practicing this rule for years and I think it's solid.

A few other comments about the blog, email, flowers, and the phone. It is fine to call me. If I don't feel like talking, I won't answer. If you leave a message that says call me when you get the chance, then just know that you are in the cue and I will return calls based on availability and who I like best. Make your own assumptions. Please don't call after 8. I love emails, but I get a lot and I can't answer them all (or even read them all) right now in a timely manner. Same return rules as the phone apply. My phone can receive texts but it can't send them. (Phil?) The flowers are lovely and my room runneth over. That brings me to the blog. When I get home I will figure out how to add pictures to it and make it more interesting. It is more interesting for me, if you comment on it, but I understand that that has been a problem for some people. I think you have to register for a google account to be able to comment. I think it's free and easy but I could be wrong about that. Also regarding the blog, it is likely that at some point you will run across something here that completely offends you. Sorry. What you won't run across much here are personal bits about how Jason, Charlie and I are handling this disease . . .too much sharing, even for me, (and yes, I know that that is saying a lot.)

That about wraps it up for today. I will meet tomorrow with the medical and radiation oncologists to formulate a plan for the worst summer of my life. It appears that June will be surgical recovery, July will be the first month of radiation/chemo and August, Sept and October will suck. After that I will be back to my old charming self assuming this little liver thing turns out to be nothing. . . .

The Hospital is NO Place to Rest!

Greetings all! Thanks for all the great comments on the blog! And for the phone calls emails cards and flowers. Thanks too for NOT visiting. While I am up for a text message or two and even a phone call here and there (mostly just to Charlie) I am mostly trying to rest while being poked, prodded, stuck, catherterized, decatherterized etc. (I also got the room closest to the nurses station!--unbelievably LOUD) I tell you, the hospital is no place to rest. As Jason already shared with you, the surgery went absolutely as well as we could have hoped and I feel much better today than I ever expected I would. I have even been able to eat some semi-solid food so I may not loose the 10 lbs I was counting on this week! Too exhausted to be clever here today but just wanted to say thanks for all the love and support. I hope to be home on Thursday(which is dependant on the 4 drains that are still oozing goo from my lymph nodes) and am looking forward to a good night's and then a good day's sleep! I'll try to write again tomorrow.

Post-surgical Update- from Jason

Tammy is doing well after surgery. She is quite tired, but is fully lucid, and talking. She is swallowing water with modest discomfort. She is doing well enough to complain about the leg squeezers used to prevent clots, why a second stupid IV has to be in , etc...

All in all, a good & encouraging day.

Surgical Update

This post will not be nearly as clever as Tammy's, but since she's still under the effects of general anesthesia, my less skilled writing will have to do (Jason posting for Tammy if you haven't figured that out yet).

Tammy's surgery started at 1:08 this afternoon. Her surgery is now completed, and she is in the PACU (post-anesthesia care unit). We should be able to see her in 1-2 hours. Dr. K reports that the surgery went well, with no surprises. The frozen section of the thyroid lesion & 2 nearby lymph nodes was benign, so he did not have to take the left half of the thyroid out, so she shouldn't need long-term thyroid replacement medication.

Dr. K thinks that the primary tumor started in the right tonsil, with some extension just onto the postero-lateral aspect of the tongue base (back right side). He feels that he was able to get the primary tumor out, without long-term effect on her ability to talk (vitally important to her as you all know!!!) or swallow. The lymph node removal went well also, with no apparent involvement of nearby vessels or nerves.

In our pre-op converstation with Dr. K, he mentioned that the official PET scan report indicated a liver nodule that was hyper-metabolic, and would need further evaluation. He must have detected the ashen look of fear on my face at the time, as he was reassuring after the surgery that metastases to the liver without also going to the lungs and without any systemic symptoms would be quite atypical of a tonsillar cancer. Tammy will likely need a CT of the abdomen and possibly also a biopsy of the liver lesion to look into this further, but hopefully this will be benign, just like the thyroid nodule.

So far so good today. I'll post again later this evening. Thank you for your interest, support, and prayers.

Oh The Irony!

You know, the irony  associated with the fact that I have a cancer that could seriously limit my ability to speak is not lost on me!  At first I just laughed and laughed . . .honestly, it's so funny.  Also, it's  a complicated cancer to explain . . .it takes some talking through.  .  . . .and there are no good plastic surgery perks at the end . . .I mean really now, couldn't I have just gotten breast cancer which everyone knows about and understands?  You know . . . . cut 'em off and get me a nice new set?!  Oh no, cancer of the head.  It doesn't even sound right.  (It should be noted though that it's not cancer of the brain . . .this one generally doesn't spread there and for that I am very grateful.)

But later, when I'm a cancer survivor and people ask about the great scar on my neck . . .it's going to be a lot of trouble to explain that I had "head cancer". Most people actually say "head and neck cancer" and if you want to get technical (and everyone in the cancer world does) the official name is Stage IV metastatic squamous cell carcinoma of the head and neck with origin in the______. We don't actually know the part in the blank yet.  It's a big name.  

Fact is, once you throw the "C" word out there it doesn't much matter after that.  It's a club. I'm just a pledge now but the community is amazing and everyone has a story. They tell it to you with out even meaning to. I spoke to a guy yesterday, Kevin,  who I've never met before. Don't actually even know where he lives and couldn't tell you his last name though I have it written down somewhere . . . he works with my friend M.A., he went through this last year and when she spoke to him about it , he just said here's my number . . .tell her to call me. We spoke for a couple of hours I think . . . . he has no idea how much he helped me. Then there's my friend Julie, she's in the club already. Her beautiful son Adam is a neuroblastoma survivor. Her brother Tony is an oncologist in Nashville and  himself a lymphoma survivor. He gave us a long distance consult that really opened our eyes to some questions we want answered as we go forward.  Also, Julie brought me a "cancer kit." It rocks!  But it also sucks that there is someone in my circle of friends who is so intimately associated with this experience that she knows what to put in the damn thing ( the thing I most appreciated was the file folder for all the paperwork!--you have no idea how much paper this disease generates!) 

There is also the guilt . . .because I have some other folks I know in this club and I now know that I didn't do nearly enough  or anywhere near what I should have for them. Before it was me, I thought "I won't call because I don't want to intrude on their family time."  Or, why would one more entry on the website matter  . . . when someone you love is dying (or even if you're just considering the possibility that they might) do you really want a card?  Everything I do seems so small so I won't do it all.  Well let me tell you something, I have been glued to the computer for the last 2 days: every email response, every comment on this blog, every promise to include me on a prayer list, MATTERS.  It's the only thing I really need.  Just call, I may not answer and I may not get around to calling you back for awhile (but really, that's nothing new!) but call anyway, leave a message, comment on the blog. Check in with Jason, I think its harder on him than it is on me.  

So, having said all that: Wendy and Gina . . .I am oh so sorry that I didn't do enough.  I didn't really get that it's just the human contact that gets you through, forgive me.   

That's about it for today. It's my last full day BC--before cancer. Not really of course, because it's there already and it's going to be for quite awhile. That's another conversation that I had with Julie and with Jason, part of what sucks about it the most, is that you can never go back. I would like to wake up again the way I woke up on May 4 . . .not knowing, not dreading, not fearing what comes next.  Not gonna happen, but at least after tomorrow we have a plan. Kevin said that he was back at work 10 weeks after his treatment ended (the side effects from the chemo/radiation combo are actually cumulative so the last couple of weeks of treatment and the 2 months after are the  worst.) So I've taken his calendar and made one of my own . . . Surgery and recovery: 4 weeks, chemo/radiation 6 weeks, post radiation recovery 10 weeks . . . .20 weeks in all, give or take a week or two so we will call it 5 months . . .150 days.  I am posting the calendar  and counting them down . . .we should be at "1" sometime around the end of October . . . just in time to use those cool new scars for Halloween!  I will write again when I'm able, look for a post tomorrow evening from Jason about the surgery!   

Just the background . . .

On the Monday before  Mothers Day (May 4) I was driving home from work and reached up to smooth my hair back out of my earring and I noticed that the lymph node on the right side just under my ear was swollen. I actually said out loud to myself in the car, "Shit,I do not have time to have cancer." It seemed weird to me since I didn't have a sore throat or anything so I mentioned it to Jason when I got home and he thought it was weird too.  We were getting ready to try some serious baby-making in-vitro one more time and the cycle was ready to start . . . so we both thought that I should get it checked out to make sure it wasn't some bizarre infection that was going to push back the timing of the cycle. I went in the NEXT day to my primary care doc and he did a CBC blood panel and a chest x-ray and both came back clean. He too thought it was odd that the gland was so swollen and said normal protocol would be to watch it for a few weeks and then if it didn't go down, to biopsy it. Well . . .as you know, I'm not really a watch-and-wait kind of girl, so 36 hours later on Thursday morning, I called to make an appointment with an  ENT doc who specializes in head and neck surgery to get his opinion and hopefully a biopsy.

Dr Kamerer could not get me in on Thursday or Friday so I made the appointment for Monday morning the 11th at 9:15. He immediately biopsied it (sharp needle jabbed into the neck and twisted around a bit--fun!) and scheduled me for CT scan on Wednesday morning and a follow-up appointment on Friday afternoon to discuss the results of the biopsy and scan. When we got there on Friday afternoon (May 15) he shared with us (Jason went with me of course!) that the results of the biopsy were inconclusive because he did not get enough cells but that the CT scan clearly showed that at least 2 lymph nodes were full of something they should not be that he defined as "likely to be tumor".  He did a second biopsy and scheduled me for PET scan on Tuesday (4 days ago on the 19th). On Tuesday morning before the scan, I went into the cancer center to meet with Dr. Jim McDermott, the oncologic pathologist (ie the guy who looks at tumor cells under the microscope to try and figure out what kind they are) for yet another biopsy . . .he jabbed a needle into my neck for the 3rd, 4th and 5th time and was able to 1) withdraw a lot of fluid from one of the nodes, 2)finally get enough cells to actually analyze, and 3)look at them under the microscope immediately and give me some answers.  He confirmed that it was a tumor of some sort and shared with me his best guess observations--not lymphoma or thyroid cancer as we had hoped, which are relatively easy to treat, but some sort of head and neck cancer that starts in the squishy places in your mouth, nose, throat etc and that most people don't even know they have until it has already spread somewhere else.  

With that news, I headed off to the PET scan where they give you some IV glucose and then scan your body to see where it "lights up" on the picture because cancer cells take up glucose faster than other cells. . . . The results of all that and what happened next are below . . . copied from an earlier email  

Tuesday May 19th: The news today is not good but not horrible either!  We finally got some biopsy results back that show "undifferentiated carcinoma cells" most likely squamous cells from  somewhere in the head and neck that have spread to the lymph nodes on the right side of my neck.

Based on the PET scan that we did today, it is likely that the primary tumor began in one of two places . . .my right tonsil or the base of my tongue (I know! Gross!) there is also a potential spot on the right side of my thyroid but they actually think that this may be a SECOND cancer not related to the others . . . Two for one, you know how I like to excel at everything I do! 

Anyway, the treatment for this type of cancer is pretty straight forward---- CUT IT OUT! On Monday, May 25th at noon, (21 days after i first noticed the mass) they are going to remove my right tonsil, and biopsy the tongue base (NO they will not be cutting into my tongue--whew!), then they will go in from the outside and remove most of the lymph nodes just below my right ear (where the mass is now) and finally, make another incision just under my adam's apple and remove the right half of my thyroid. (totally cool Frankenstein like scars for Halloween . .. Perhaps just this once I won't be a witch!) Dr. Donald Kamerer is going to do the surgery at Carolinas Medical Center in Charlotte. He is the Chief of Head and Neck surgery there and also the Chief of the Multidisciplinary Head and Neck Cancer team. The surgery is expected to take about 6 hours and then a couple of hours of recovery after that. Jason will try to post something here while I am in recovery. 

The worst of it from a pain perspective is apparently the tonsillectomy which is supposedly quite painful for adults.  The hospital stay will be 3 to 4 days and then about 3 weeks of recovery after that. Just as I am beginning to feel better and start to be able to eat and talk normally again, they will begin the radiation and possibly chemo--fun summer! The odds of curing the stuff are better than 50%  so that is good news (heck, we've spent $30K on in-vitro trying to have a baby with far worse odds than those so I'll take it!) My Mom and sister are coming down for the surgery and then my Mom will be back at the end of the week when I come home. Charlie will be staying with Erik for those few days and then . . . .we will just take it one day at a time . . .