Happy Thanksgiving!

I came across this earlier in the week and it just seemed right, and very true to me, so I thought I would share it here today with you. It is an awfully powerful idea.

If the only prayer you ever say is thank you, that will be enough.

(From the German theologian and humanist Meister Eckhart, and Oprah)

Since you asked . . .

Alas, my biggest score in Vegas was with my husband :). . . and I'm certainly not complaining about that! 

We had a great time. I played some tournament poker (badly) but had a ton of fun, saw the underwater Cirque show, "O" at the Bellagio-remarkable! and had an amazing dining experience (even without being able to taste a lot of it) at Craftsteak, Tom Colicchio's (from Top Chef!) restaurant-- broke the bank and ordered the tasting menu (because . . you never know what might stand out to me) . . .4 appetizers, 3 meat dishes, 3 sides including a plate with 4 different kinds of mushrooms, and 4 desserts, one with 2 flavors of gelato and one with 4 different kinds of fruit! By my count, 21 different things to taste not including the rolls or drinks! The mushroom dish was a favorite of mine, the Kobe fillet stood out for Jason . . . I would recommend the experience to anyone who has a spare mortgage payment lying around . . .the service was phenomenal!

Regarding the job, it's great to be back (though I still wish I didn't have to work on weekends!)--check out the cool article in the Charlotte Observer Home section tomorrow (11/14) about our new smaller home plans and about being the ONLY home builder in the nation to ever win the National Housing Quality Gold Award twice!

That's all for now . . .1/2 hour left of Friday the 13th and no calamities to speak of!

Answer: "Yes, I am sure that I have ankle cancer."

Question: "Did you say that your ankle is sore after you twisted it yesterday?"

I just want you to know that the question/answer scenario above feels like a perfectly reasonable exchange of ideas when the person answering the question has had cancer. I understand from others that it abates some with time, but just now, paranoia is hard to reason with. Every twinge, ache or pain is analyzed and cataloged. The doctor is called (twice this week) and seen (only once!) Reassurances are offered, but not believed. The Internet is scoured for symptoms of recurrence. First, you want to find someone who has the same symptoms as you and who WAS having a recurrence, and then, you remember that in this particular case, it would be better to be WRONG and not have cancer, than to be RIGHT and to have proven to the medical profession that you know a thing or two about this disease! Good grief! Eventually you stop looking. There are a lot of stories and some of them do not turn out well.

There is however, at the moment, no reason to believe that mine will not turn out well. No more reason than there ever has been I mean. . . . which is to say that the scans looked pretty good and we will do them again in early February and then we will see.

This all got a little out of hand last week because my throat hurt. A lot. Differently than it had before. What to do? I had just seen the oncologist and he said the scans looked good. My appointment with the ENT was not scheduled until the 17th. But it hurt, especially when I coughed. Oh Lord, what now? Call the doctor! Insist that he fit me in! (Fine, Mrs. Todd come in right now!) Drive 30 minutes, wait 30 minutes, talk to the nurse, tell her every symptom I have had for the last 45 days and why this feels different! What do we do now?! More surgery?! Will they have to cut more into my tongue this time?! Gross! What about talking and swallowing?! Oh damn, I will have to get the tube back in. What if I can't talk? I should record my voice for Charlie. What should I record? I will read to him! What should I read? Maybe the Harry Potter books? Yes that's a good idea! Where was I? Oh yeah, my throat hurts. How can this be happening?! What are my options? WHAT DO WE DO NOW?

"Perhaps, we should just see what the doctor has to say."

Hmmm . . . . Not a bad plan.

Enter the DOCTOR. Asks several questions . . .where does it hurt? On both sides or only one? Any coughing? Nose running? Let's take a look. Peers around in my throat for awhile. Smiles benevolently. "Everything looks fine in there. . . . Mrs. Todd, . . . . .I think you have . . . .a . . . cold."

A COLD.

Another sweet smile.

At least he didn't pat me on the head.

"Since you came in today, I don't need to see you on the 17th of November, please schedule you next appointment for 8 weeks from today--the week after Christmas. Enjoy your holidays."

WHAT?! Are you kidding me? I don't want to wait 8 weeks, I want to see you every week! I want you to scan it every day and I want an affidavit signed in your blood that you are sure that it is not coming back. I know that this is NOT too much to ask. This is your job. Do it for heaven's sake. Why are you looking at me like I'm crazy?

Because you are crazy. Nuts. Certifiable, in fact.

By the time I got home, I was sure that he was just some quack who wouldn't know cancer from a hole in the ground (or in this case, from a cold). Let the Internet scouring begin! (sometimes you have to take a break to eat and pee and meet the school bus and talk to your boss about going back to work . . . .thank God, or I might still be there)

A week passes.

In that time we 1) decorate the house for Halloween (scariest one on the street complete with scary music and the fog machine! Awesome!) 2)develop a plan for going back to work (on November 9th, with full pay and my old job description! Yippee! ) 3) meet with Charlie's teacher (great report card!) 4) get things organized for Mom to visit and take care of Charlie while Jason and I are in Vegas (Nov 4-8, we leave tonight!) and 5) cry uncontrollably ALL the time, over tiny things . . .convinced that I am dying and that I will never get to use the fog machine again. HUH?!?!?

Wake up yesterday and discover that for the first time in 3 months . . . I have gotten my period.

Which sort of explains the crying, and the irrational behavior, and some of the paranoia, but does not, in any way, explain my sentimental attachment to the fog machine.

Great! Just when I am going away for a fun and romantic trip with my husband, I have a cold. . . and my period.

But, my ankle does not hurt.

Yippee! Yahoo! Hooray!

Just a little excited because . . . the scans looked great! Yahoo!

We will scan again in 4 months--sometime in early February. In the meantime, My ENT will look down my throat every 7 or 8 weeks to make sure he doesn't see anything odd in there. That would be bad. He has an even better view than the scans when it comes to looking in my throat . . and that is DEFINITELY where we do not want it to return (why? because we have REALLY treated it there already, and if it comes back in that spot it is not likely to be easy to cure) The scans though, check to make sure it isn't creeping into another lymph node or into my lungs, and if it is, the sooner we find that out, the more treatable and potentially curable it is! So, for today, great news! Dr. Kamerer, my ENT didn't see anything to alarm him last month and I will see him again in about 5 weeks. (This bodes well for our trip to Vegas in early November!)

Also, it looks like I will, in fact, be a witch, albeit a skinny one, again for Halloween--the surgery scars have healed so well that they are almost invisible---so, no bride of Frankenstein costume for me. I have had the feeding tube out for about 3 weeks now. The rules were that I had to maintain my weight for 3 weeks without pouring anything down it. Luckily, that didn't turn out to be too difficult! (Getting it out was a 23 second horror movie that my husband will have to share with you-I have not yet forgiven him for his part in it) My sense of taste is still terribly distorted which makes eating no fun at all. Still haven't found anything that actually tastes good so my weight has continued to slide down a little since the tube came out. Darn.

Everywhere I go, people tell my how great (i.e.thin) I look and that they love my hair in its more natural (darker ) color. This leads me to believe that before I had cancer and lost 26 pounds, most of you thought I was a big fat cow with bad hair. Fine. I can deal with that, however, a word to the wise. . . . don't say "you look great!" to sick people on days when they CLEARLY do not look great. We have mirrors. Also, we may be sick but we are not stupid. When you say, "You look great!" We hear one of three things : 1)"You look great for someone who has cancer." 2)"You look great for someone who might be dying." or my own personal favorite, 3) "Damn girl, you look a whole lot better than I thought you would!" The fact that you expected me to look worse doesn't negate the fact that I feel crappy and look worse than that. Just so you know.

I have felt mostly well in the month that I haven't written here. There are some issues with the musculature and nerves in my right shoulder and arm ( as a result of the surgery and the radiation) that we will continue to work through; taste, as I mentioned, is still a problem; I still need the pharmaceutical sleep aids, and, I have worn out the credit card shopping for new clothes (which is NOT good because my current job description no longer exists at Simonini and they are looking for a way to make it worthwhile for me to come back to work!) I have surprised myself by realizing that I DESPERATELY want to do this. I miss the company, the job, the people and the decorating ideas . . .we'll see.

That's all for today. I WILL continue to post here and I WILL write more often, really! Thank you for your continued love and support. Have a blessed day.

Better not Worse!

I PROMISE to write a long account of what is going on with me later this week (I said that last week too!) but just know that I really am feeling better every day as we inch closer and closer to the scans on October 9th and results on October 13th. Much to tell you, but feeling so well and having so much fun that I haven't had an hour to sit down and compose a blog (making curtains, going to Bunko, meeting with my boss about going back to work, lunch with girlfriends, getting my nails and hair done) and that's just all the non-medical, non-family stuff! 

Look for another post soon and please know that your prayers, your cards, your emails and your phone calls have made ALL the difference in my recovery.  It is true what I wrote in my profile . . .I live a charmed life.  Thanks for sharing it with me!

I'm feeling better!

THANK YOU ALL .  .  .  for all the kind words of encouragement over the past week.  Sorry to have been such a whiner. I really am feeling better, both emotionally :) and physically. Well, not better exactly, but not worse.  It seems that we are at the bottom of the bell curve and ready to climb up the other side----yay!!  

I have a follow-up appointment with the surgeon on Tuesday the eighth and then with the radiation oncologist on the 17th -- after that, I should be able to get the feeding tube out! Everything still tastes awful but there are a fair number of things that I can eat and swallow now and my weight has remained constant for the last week without pouring any calories through the tube.  I've lost right at 20 pounds since the surgery and can fit into my size 4 clothes again!  Unfortunately, I don't own any size 4 clothes anymore . . . darn . . . shopping . . .!  

(Not much shopping though) I can't wait until I can really taste again and when that happens I'm sure I won't stay this size for long--and that is totally OK with me!

I promise to write again soon, just wanted to give you a quick update for today . . . Happy Labor Day.

Life AT . . .after treatment . . .

Hey all--

Sorry it has been awhile since I posted but it has been a strange 10 days.  First the pure euphoria of finishing treatment.  Then . . . the complete let down of finishing treatment . . . . They warned me, but it caught me by surprise.  After 3 months of daily doctor visits, labs drawn,  a dietician monitoring my weight on a daily basis, nurses fussing over me and asking about side effects, and no less than  6 physicians keeping track of everything from dizziness and bowel movements to the texture of my skin . . . suddenly . . .  nothing. 

"You did great . Thanks for playing. See you in October when we will let you know if you're cured . . . or not."  

Very disconcerting. Especially because it feels like I'm not doing anything, not fighting, just waiting. . . . and you know how I love to wait. 

It's going to be a long 6 weeks.

In the meantime, the side effects  suck. Throwing up almost daily, gagging a lot more often than that, napping during the day and sleeping only with pharmaceutical help at night, no taste and no appetite, lost 11 pounds in 2 weeks and ah, the mucous, the ever @$&% present mucous. 

So . . . for those of you who thought I was doing great and loved my positive attitude, etc etc etc. sorry, but this bites.  Now is when all the doubts set in.  You see, I'm not done with cancer, I'm just done with treatment and I DON'T KNOW what happens next and I DON'T have any control over it! AHHHHGH!

Ok, Ok . . . I'm not really going off the deep end. Apparently this little "post-treatment depression" is very normal. . .  and I've done all the right things about it . . .  like noting it, and talking to people about it, and writing about it here,  and now I just have to deal with it.  

Besides, I'm not really depressed. I'm pissed. And I'm tired. And I don't feel well. And I'm tired of being tired and not feeling well.  And it's all normal.  And I don't want to be normal. Frankly, I prefer to be extraordinary. I'm working on it. 

And . . . I do still have a lot of things to be thankful for.  And I do still note them:

I was well enough to take Charlie to his first day of 3rd grade!

I have several  good hours every day where I can talk to friends, decorate, or get my nails done.

My side effects are not nearly as severe as they warned me they might be.

There is lots of time for reading.

I still have the most amazing husband ever. . .

 . . . and kid, and family, and friends, and neighbors! 

It is probably cured.

I can still swallow and TALK. (like I wasn't going to be able to talk-hah!)

So, that's it for today.  I am mostly well and getting better all the time. Thanks for checking in on me! I promise a more upbeat post next time . . .so long as the mucous will cooperate. 

  

    

No need for sheep . . .

The word "BLESSINGS" is the first thing I see when I walk downstairs every morning. It is prominently displayed above the range hood in my kitchen and at perfect "eye level" when I hit the 4th step from the bottom.  I put it there on purpose because of the lyrics to one of my favorite songs. They go like this:

When I’m worried and I can’t sleep
I count my blessing instead of sheep
And I fall asleep, counting my blessings

When my bankroll is gettin’ small
I think of when I had none at all
And I fall asleep, counting my blessings

I think about a nursery
And I picture curly heads
And one by one I count them
As they slumber in their beds

If you’re worried and you can’t sleep
Just count your blessings instead of sheep
And you’ll fall asleep counting your blessings.

So if you’re worried and you can’t sleep
Just count your blessings instead of sheep
And you’ll fall asleep counting your blessings.

The music and lyrics were written by Irving Berlin for one of my all time favorite movies, White Christmas. In the 1954 movie it was sung by Bing Crosby and Rosemary Clooney and they both recorded it later (as did several other folks including Eddie Fischer and recently, Diana Krall) but it is still the movie version that is my favorite. 

I use the lyrics as a sort of mantra when something is worrying me . . . or . . . when everything is wonderful. So much so, that a few months ago (before I was sick) Charlie asked me about the tune that I was humming.  I explained that I was worried about something and that it helped me to remember to get "unworried." The next time he heard me humming it under my breath, he ran up and gave me a hug! "Don't worry Mom!" he said. "Oh," I said, "I wasn't worried, just happy." "But you were singing the worry song."  "Oh yeah, I was . . . but most of the time its a blessings song."  "Hmmm," he said "I don't get it." I tried to explain that turning worries into blessings is what the song is all about, but I think the concept was still a little beyond him . . .

They play music every day in the radiation room. I never know who has chosen the station/CD, and I never know why. Funny, but I've never asked. I sort of like the surprise.  I've had big band classics, Sinatra, Michael Jackson, and Madonna (twice!) but usually its a random easy listening station. I can usually get in about 4 songs while I'm on the table, but I never hear the first one. Because I always start with my song, my blessings song, in my head. 

Tomorrow, Wednesday the 19th of August, I will do that for the last time.  In itself, that is a remarkable blessing. The side effects have gotten particularly crappy this week and I am told that they are likely to significantly worsen before they get better, but what a blessing that they did not start sooner! (See how it works!?) I get calories almost exclusively via liquids or the tube, (which makes dinner prep really easy). I have no hair on the back of my head (still covered by the hair at the top though). The skin on my shoulders, back, and neck is red, itchy, scaly and horrible looking (but it too, is covered by my hair). I have no sense of taste to speak of (but someday in the next few months I will get to try everything I have ever eaten in the past, as if for the first time). I got cancer at age 44 (I got to find out how many people love me). We may not have cured it, it might come back (what a great reminder to live every day to its fullest). After tomorrow, no more daily trips to Charlotte. (think of the gas $ I will save) Very few appointments at all. (More time for home decorating!) Just feel super awful for a few weeks and come back for a scan the first week in October. (I get to be home every day when Charlie gets off the bus)  Etc. Etc. Etc. The worry into blessing transformation works for almost everything (ok, ok, except the damn mucous. I still CAN NOT find a blessing in that, it's just GROSS)

Until tomorrow, forget about the sheep. Try this:

 http://www.tsrocks.com/b/bing_crosby_texts/count_your_blessings.html  

The chair is empty...

Woo hoo! No more chemo and here is my empty chair to prove it! Feel pretty good today. Tired of course but I will get some rest tomorrow and then 8 more days of radiation and DONE!!!!!!!!!!! 

Mucous is GROSS!  Not tasting sucks! I pine for red wine, red meat and salty potato chips . . .by Christmas maybe?!?!?

  

For today, my three things to be thankful for are:

1) kids who invent their own cool games 

2) Jenn, Charlie's "bonus" mom who is always willing to welcome him into her household at a moment's notice and 

3) having an anal husband--even the smallest details never fall through the cracks

Love your emails, thanks for sending them, I will try to answer soon. Have a great weekend.

No stale snacks . . .and other things to be thankful for!

For years, I have sporadically kept a "gratitude journal". Blank pages of a pretty little book filled each day with 3 things for which I am thankful. Usually not 3 "BIG" things, but 3 uncommon things, 3 little things that force me to note, just for a moment, that the thing . . . that could have gone wrong . . .didn't. Or, when something is annoying, irritating or wrecking my schedule . . .a bit of gratitude that it isn't worse (ie: when running late and then being forced to wait behind the barrier for the train to pass, there might be a jounal entry that reads: I did not get hit by the train!) In thumbing through the journal recently, I found other entries like: "the funeral procession I passed was not for somone I know" . . . "the glass I dropped in the sink did not break" . . . "ten perfect fingernails" . . . "the sound of Charlie's laughter" . . . "perfect paint colors" . . . "the maid came today" . . . "Suzy" . . . "the very sound advice of my friend Pat"

Many of these, based on the date, and what was happening in my life at the time, I can actually remember writing. The book holds these musings for the last 15 years or so, a few weeks at a time of daily entries and then months with nothing, another few weeks and then, a drought of almost a year . . .I was inspired though, to pick it back up this week because of two specific things for which I am particularly grateful: 1) I do not have a layered haircut and 2) I never have to worry about stale snacks.

The first is easy to explain. I mentioned in an earlier post that all the hair at the bottom half of the back of my head is falling out because it is where the radiation leaves my body ---with a layered cut, I would be VERY strange looking indeed, but, because my hair is all one length, you can't even tell--the long stuff from the top covers up the bald stuff on the bottom--so far!

And, I have to tell you that never having to worry about stale snacks is particularly gratifying! Charlie shared this with me earlier in the week when we were talking about my feeding tube. He said, "Mom, you know what's cool about that tube? If you ever want a snack you can just pour something down it wherever you are . . . in the car even! Do you know what this means, Mom?" "Um . . . what Char?" "You NEVER have to worry about stale snacks!"

Wow! How cool is that? Of course he can eat snacks in the car too and I have NO idea why he is worried about stale ones, but it's something to be grateful for, none the less. (two days later Jason pulled a ziplock bag of goldfish crackers (almost goldfish dust) out of his camp bag . . .can't say how long it had been in there but it might explain his concern!)

Anyway . . . I am back on the gratitude journal again and my three entries for today are:

1) SINGLE DIGITS! Only 9 more radiation treatments to go!
2) My sister's long and convoluted stories (Lord, she makes me laugh!)
3) In the cancer arena, my journey is only a skirmish . . . 32 days of treatment . . .likely not months and years of battling---one crappy summer traded for a real chance of cure.

I am unbelievably blessed . . .and grateful.

The beginning of the end . . . .

Hello all--

Today, August 3rd, is the first day of my last week of chemo!! --the beginning of week 5 of treatment. Week 4 went well and while my side effects definitely increased (more mucous, increased gag reflex and other equally charming things) they were still not nearly as bad as I had anticipated.  All my doctors are thrilled at how well I am doing and at how well I am tolerating the therapies.  My sister, Mariea is in town to be my chemo partner through Wednesday and then Jason will do the last 2 days with me on Thursday and Friday.  Much to my dismay, radiation is cancelled on Friday because they are doing a software upgrade to the laser . . . so my graduation day has been postponed to Wednesday August 19th.  21 down and 11 to go--two thirds of the way through!  

For anyone bringing food, you can definitely cut down on the quantities now!  I am still able to swallow but mostly, liquids, or soft, REALLY bland foods with no seasonings.  (not the yummy flavorful things you've been making for me!) Thanks so much though for taking care of my boys! It is really appreciated (and after being in treatment with me from 7-5, my sister appreciates not having to cook!)!  It is so humbling to have such remarkable friends and neighbors.  You guys rock!  

That's all for today . . .if I get a chance to write tomorrow I will tell you all about stale snacks and layered haircuts and why I am grateful that I don't have to worry about either! Thanks for checking in on me. Have a blessed day. 

HALF WAY DONE!!!!!

Wahoo! Yippee! Hooray!

Ok, so . . .the easy half . . .but still . . .YYYAAAAAYYYY!  

Random musings . . . .

1. After monday I will be half way done with treatment!  16 complete of 32. Hooray!

2. The mucous already sucks.

3. Tom Sorenson, the Charlotte Observer sports columnist has the exact same cancer as me. He finished radiation 2 weeks ago and wrote a column about it on July 18th. Check it out online if you don't get the paper.  I have been emailing back  and forth with him.  He is cool.

4. I also have a new cancer club friend, John, who finished his radiation in April.  He is great to talk to about what comes next.

5. What comes next sucks.

6. I am still not taking pain meds and my gut is working better. Yes!

7. It is true that I have not lost my hair from the chemo.

8. I have lost my hair from the radiation. It is falling out in big handfulls at the very back of my head--this is where the radiation leaves my body. Luckily, the longer hair from the top of my head covers those areas!  

9. I had a swallowing consult with a speech pathologist last week.  Cool, but weird. They stuck a tiny camera down my nose (Yes, they really did. I am so tired of having people up in my grill) and watched me swallow several things--applesauce, crackers, peaches and an M&M swallowed like a pill. So far I still do OK and it will give them an idea of how to help me if later I don't do OK.

10. It hurts to swallow.

11. A lot.

12. Being on the table for radiation is turning out to be one of the most relaxing parts of my day.

13. I am not kidding.

14. I still love getting your cards, emails and voice mails. I love that people love me.

15. I especially love that Jason loves me. 

16. It is possible that he is the perfect husband.

17. My Simonini family rocks!!! (Libby, thank you SOOO much for your text, it meant a lot!) Alan always calls. I still talk to Holly almost daily. Terri S. thanks for checking in. Joanne, I loved the card. John T thank you for making me laugh by visiting (when you're well) and on the phone when you're not--does Jen know about the pineapple? Lynn and Christy thanks for the messages on email and the blog!

18. I don't think the chemo has affected my hearing but I will do a test this week. 

19. I really do pour coffee down my feeding tube. I need the caffeine.

20. It is not that I can't taste anything, it is that everything tastes awful. Sometimes even water.

21. It really sucks when everything tastes awful.

22. We had a great visit with Matt, Keri and the twins.

23. I am a terrible Facebook user. Just email me at tjoakes@bellsouth.net.

24. I will type again soon. 

25. Thanks for checking in! 

My throat still works and my fingers are not broken!

I know, I know I know, I have not written in awhile and you were wondering if I was doing ok, or if my fingers had fallen off and I was unable to type, or something else equally as horrible. To tell you the truth, it was just the opposite!  I felt pretty darn good last week--far better than I expected to, and I continue to feel pretty good this week (with a couple of exceptions that I will get to in a bit) but I just couldn't bring myself to write here . . . . I think I was just tired of being "Cancer Girl" and in a bit of denial.  Anyway, SORRY!  I know you guys love me, and check in on me here, and worry (based on the phone calls and emails when I don't write! :) ) so I will try to do better from now on!

So, first the medical update.  As of today, July 21st, I am just over 1/3 of the way done with treatment!!  Woohoo! Yippee!  Hurray! The total treatment plan is 32 consecutive weekdays of radiation (6 and 1/2 weeks worth, not the 36 -40 treatments that we had originally thought!) For 10 of those days I get chemo as well.  So far I have had 12 radiation treatments and 5 days of chemo.  I will continue radiation only treatments through the end of July (this week and next) and then do another week of chemo/radiation August 3-7. Then 7 more radiation treatments after that, finishing on August 18th. When you break it all down like that, it seems like a walk in the park--and so far, it hasn't been horrible, just moderately awful.  

Everyone expresses stress in different ways and apparently for me, the key to my well being is all rolled up (maybe literally) in my digestive system. They can't really offer me any other explanation as to why my intestines refuse to function in anywhere close to a normal manner. After about 10 days of 3 different meds a day, and a big swing from not working at all to working in overdrive, they seem to be settling down to something resembling normal--or at least predictable.  You have NO idea what a difference this makes in my overall outlook on the world.  I am still able to talk normally and  I am not yet dependent on the tube to eat (so far I just put any disgusting tasting medicines down it and this morning . . . .a cup of coffee!  More about that in a minute) I am far more tired than usual -- a two hour nap every day is  almost a requirement-- and my throat is starting to close in--feels like I am swallowing past a big grape sized something stuck in there, but it doesn't really hurt.

By far the WORST side effect so far is that my sense of taste is GONE. For the most part, everything tastes like some version of metallic dishwater.  Hence, the coffee (utterly disgusting right now in terms of taste but I need the caffeine fix) down the tube this morning!  Sweet is sometimes better than salty but nothing tastes like it should and only a few things taste like I want to swallow them at all.  I was practically in tears this weekend when a piece of cherry cheesecake that I was so looking forward to, didn't have any taste at all!  ( So, for you guys who are bringing dinners--I am still eating and appreciating them.  Jason and Charlie are eating, appreciating, and tasting them!) Most people do get their sense of taste back -- in 9 months to a year--and no, unfortunately, I am not exaggerating that time frame. So far, I have not needed any pain meds beyond the occasional Tylenol so I have been able to drive myself to and from treatments. The docs are warning that that is likely to change by the end of next week and that I may be moving to the liquid diet down the tube by then as well.  All I can do is wait and see.  

The other big side effect they keep warning me about is the mucous. Yes, I know, totally gross. Apparently there are mucous glands in your throat and apparently they are very irritated by radiation therapy, which causes them to overproduce this goo that I will then have to spit out on something like an every  10 minute basis.  When I asked when this would start and how long it would last, the nurse was pleased to tell me that she was surprised that it hadn't started by now and that it would hopefully be winding down about 6 weeks after treatment ended. Hello?!?! I beg your pardon? 10 weeks of hacking up goo, reminiscent of the worst head cold I've ever had?  "Why yes, she responded, it is  a lot like that, except . . . sometimes it's sort of ropy and hard to spit out." Lord, let the horror movie begin.  At least I won't be able to taste it.

That's it for the medical side of things, other than that, it was a week for in-laws (both the official and unofficial kind! ) Jason's folks were here last week and we got to spend some time researching/chatting/ suggesting things for the new house they are building on the farm in Alabama. SO much fun, you know that I am ready to build again right now, I love the process! Even more fun when it is their stuff and therefore their $$ and we get to reap the rewards by having an amazing place to visit!  Plus, they were overdue for a visit and it was great to see them while I still felt reasonably well. Matt and Keri, Jason's brother and sister-in-law, will be here on Friday with the twins.  I can't wait.  Justin and Abigail will be 5 in a few weeks--so funny right now and Matt and Keri make me laugh-always!   I also heard from almost all of my could-have-been in-laws this week!  I am so lucky in that regard.  Though I have never had a type of guy that I fall for.  I have always fallen for guys with GREAT families.  In fact, I have fallen head over heals in love with the families of almost every guy I have ever dated (breaking up with the him has never been as hard as breaking up with the them)  Luckily, most of the thems have continued to stay in touch! Adam's sister Joy, religiously comments on the blog which I love, and I got another sweet note with an angelic picture from his parents, Jim and Katy, this week. I think Mark's whole family has called or emailed me.  I have always kept in great touch with his mom, Mary Ann, but I hear often from Terri, Carrie, and Sharon too, and last week I got a wonderful email from Meredith, his now grown up niece that I have known since she was 5--she's in her 20's now!  (Mere--I loved hearing from you!)  Erik's mom, Susan, calls, or types, or sends something almost every week and his Uncle George and Aunt Betty, two of my favorite people on the planet, sent me wild strawberry jam, made from strawberries picked in the meadows of Little Horse Creek.  (and I ate almost half the jar before my sense of taste gave out!)  I know that I have mentioned this here before but it bears repeating,  I believe that the true gift of this disease is consciously being made aware of all the people on the planet who have touched my life.  Much gratitude to all of you for your love, support and prayers! Lucky, lucky me.  I will type again soon--I promise! 

105 . . . !

Just wanted you all to know that the chemo/radiation combo week continues to go extremely well--due in no small part to my amazing husband who is managing all my stuff at home, my extraordinary chemo partner (otherwise known as MOM!), all my neighbors who are bringing me dinner and checking in on me, Charlie's terrific Dad who is hanging out with him all week, the cool oncology nursing staff and RT therapists, and those of you who comment here, send cards, voice mails  and emails!  Thank you!  I love hearing from you all.  

So far, we are managing the nausea quite well with meds, though the BM issue has become . . . well, an issue . . . again.  My mouth is dryer than usual but not a problem at all, still able to eat, swallow, and talk normally. All and all I feel FAR better than I expected to, though both docs continue to warn me about the dreaded "week 4".  But, for now, I will get through week 1 and plan to drive myself to treatments on week 2. I will let you know about week 3! Stay tuned for more pictures over the weekend!  

Day 107 and counting!

Yippee!  The first day of treatment down, and only 35 more to go. (of course there is still the 60 or so days of recovery after that but still!)  Based on my earlier schdeule of allowing 150 days from surgery, I now have only 107 to go! 

Today was long but easy--no panic attack in the mask, no nausea with the chemo.  Based on today's experience and conversations with the nurses, it is likely that I will feel pretty good for most of this week . . .I may have some break through nausea next week but should still feel ok with the right medicines on board and MAY even feel well into week three!  Jason was in in clinic with me today and Mom arrived to be my partner for the rest of the week.  The meals you guys  signed up for are so appreciated, we start radiation at 7:30 and get out of chemo after 4:00 . .  . then Charlotte traffic to contend with--long day!

I will post again soon.  Thanks for checking in! 

Snake Poison, Light Sabers and Mayonnaise

So . . . tomorrow is the big day!  Now that Dr. Kamerer has  cut out all the cancer cells that he could see, it is time to turn it over to Drs. Haake and Frenette so that they  can work their magic with radiation and chemotherapy.   I am SO ready to start because I am SO ready to finish! 

When we first told Charlie about my treatments we tried, obviously, to share it with him in terms that he could understand.  I explained that chemo was poison for the bad cancer cells, but that it also poisoned some good cells too,  and that's why Mommy might feel pretty sick this summer.  

"Like snake poison?" he asked.  

"Well, sort of, but this is a special poison that the doctors make.  They do put it into your veins just like snake venom though. It will weaken any cancer cells that are still around so that the radiation can kill them."   

 "Cool!" he replied, "what's radiation?"  

"Well, the radiation is a sort of laser that they will shoot at my neck from both sides to completely kill all the cancer cells that the chemo made sick. Unfortunately, they have to aim for a wide area so it could hurt some of my good cells too. That's why my  throat might be REALLY sore. "

"Sounds like a light saber!" he exclaimed.

 "Yep!  Just like a light saber.  And . . . don't forget the creepy mask . . . that will help  too."

"Your doctors have a lot of cool weapons, Mom!"

So, as far as Charlie is concerned, we are fighting this disease with knives, scary masks, snake poison and light sabers.  A pretty good arsenal when you're eight!

I have also been given a list of other weapons to fight the dreaded enemy, WEIGHT LOSS.  Yes, you read that right.  

As I mentioned in my last update, I got the tube placed in my stomach on Wednesday. It is healing nicely and not hurting as much (and I hope to not have to use it for several weeks yet!) In the meantime, I am eating things that I love and trying to GAIN some weight.  Really. And yes, I know how ridiculous that sounds coming from a 44 year old Mom!  

For those of you who have signed up for dinners over the next few weeks--thanks.  I will post here when I go on the liquid diet and then you only need to bring enough for Jason and Charlie (which is still soooo appreciated because it means I don't have to shop, cook, or clean up!) Until then though . . . per my doctor's instruction . . . I am supposed to GAIN weight.  It's unbelievable! In an effort to assist in this quest, (and to help out those of you who have volunteered to cook for me . . .) I was given a little flyer by my oncology nurse.  It's the funniest thing I've ever seen!  I swear it reads like a Saturday Night Live skit!  The title is . . . not kidding here . . .in bold capital letters . . . HOW TO INCREASE CALORIES IN YOUR DIET   Here is the executive summary.   There are 11 items running down the left side of the page.  Ideas and suggestions for their use are bulleted on the right.  The first item on the list is Butter and Margarine. Suggestions include: Add to soups , mashed and baked potatoes, hot cereals, grits, rice, noodles, and cooked vegetables. Stir into cream soups, sauces, and gravies. Combine with herbs and spread on cooked meats, hamburgers, fish and egg dishes. Use melted as a dip for raw vegetables and seafoods.  The next four items down the left side  are Whipped Cream, Table Cream, Cream Cheese, and Sour Cream. All of which can be added to soups and sauces, put onto cereals, breads and pastas, and used as toppings for desserts (Under Cream Cheese, they also suggest rolling it into a ball and coating it with nuts for a high protein, high fat snack!) Then comes the category Salad Dressings and Mayonnaise. Quick summary is: spread on everything. Next,  my personal favorite: Honey, Jam and Sugar.  Yes! Sugar! Real Sugar! Not Splenda, Equal, or Sweet and Low! Add to bread, cereal, milk drinks, fruit, and yogurt desserts. Use as a glaze for otherwise healthy foods like meat and chicken. Then, three unexpected (at least by me) categories: Granola, Dried Fruits and Eggs.  Chop them, sprinkle them, layer them, or mix them,  INTO and ONTO EVERYTHING! Fold them into pies, custards, casseroles and salads. Beat them into purees and sauces. Substitute them for lower fat alternatives!  And finally . . . the last entry.  It's not actually something you eat.   Instead, it reads, Food Preparation.  And the bullet points are . . .  I'm sorry, I'm really not making this stuff up . . . Saute and fry foods when possible because these cooking methods add more calories than baking or broiling.  Add sauces and gravies to breads meats and vegetables (see sections on butter, margarine, whipped cream, table cream, cream cheese, sour cream, salad dressings, mayonnaise, honey, jam, sugar, granola, dried fruits and eggs!) 

If the damn cancer doesn't kill me, my arteries will surely explode! Thanks for checking in on me. Enjoy your dinner!! (I know I will!)  I'll post here again tomorrow after my first day in clinic. Have a great day.

Quick Update

Hello all-

Just a quick update to let you know that I did have the PEG tube placed yesterday and stayed overnight in the hospital . . .felt pretty good this afternoon after checking out, but as with the tonisillectomy it seems that this too, is one of those procedures where the pain sort of sneaks up on you later. Switched from regular tylenol back to the percocet which is helping some. :) I will keep you updated over the weekend and will definitely write a longer post before heading into "Treatment week#1" on Monday! (Can you believe, 6 weeks post surgery, we are just NOW beginning treatment week #1?!!) Thanks for checking in.

Photo timeline . . .

Hello all. I am not going to bore you with lots of words today but instead, I am going to test my ability to add photos to the blog! Thought you might enjoy a little photographic timeline of my progress. This first photo is of me with my Mom and my sister Mariea. It was taken in my kitchen on 5/24/09, the night before I went in for surgery.




The second lovely photo was taken 9 days later, on Tuesday June 2nd, 8 days after surgery and a few hours before I had the stitches taken out. This is why I was afraid of scaring Charlie when I got home! Looks pretty gross but if you then fast-forward four days to picture number 3, you will see that the scars are healing quite nicely! The ones on the side of my neck are actually in a crease and you will barely see them in a few months time.



Picture number 3 was taken on Saturday June 6th, hanging out with the girls from the "hood " on Lake Norman. Seemed just like old times! That's me in the middle--you can barely see the scar! (Tia,Jenn,Me,Lisa,Lori)

Ok, now, just 15 days later on Sunday, June 21st, on the lake again, with Jason, for a sunset cruise, scar still looks good, notice though, the MUCH darker hair ! Decided that I didn't need to worry about my roots during chemo and radiation. It's close to my natural color but without the grey!

And, last but not least, a picture from last Thursday June 25th (one month after surgery) on the table in radiation oncology while they make the dreaded"MASK"! Yep, that's me in there, the little knobs on the side are what bolt it to the table. I will probably not re-post this picture every day for the next several months but I could . . .! Beginning on Monday July 6th, this will be my early morning photo op every weekday until the end of August. BTW, that mask started out as a flat piece of mesh in an arched frame. Then, they heated it and stretched it over both my face and the customized blue head rest that they had already made for me. I just kept my eyes closed (though I do have room to open them in there) and pretended I was getting a facial! Maybe . . .that will work for treatments too!

That's about it for today. I am not very good at adding photos, these took me an hour! Nevertheless, I will post again in the next day or two with all the info about the upcoming treatments. The short list is . . .hearing test and tube replaced in my ear tomorrow, Tuesday the 30th of June; chemo teaching appointment, hospital check in and feeding tube placed in my stomach on Wednesday July 1; hospital check out on Thursday and then, enjoy?!?!? the holiday weekend before beginning chemo and radiation on Monday the 6th (or maybe Tuesday, the 7th). Over the weekend, Charlie gets back from Nana Camp and Mom arrives to be my chemo partner next week! Thanks for checking in on me and for all your prayers. Have a blessed day.

A JULIE by any other name . . .is still a friend!

I have the most southern name on the planet. Tammy Jo. I love it actually. My Mom always wanted people to call me both names but I put a stop to that at 1st grade roll call. “Just Tammy is fine, thank you.” (OK, not really, most of my family still calls me that and a few of my college friends!) Also, interesting to note that my Mom briefly considered naming my sister something with “Jo” in the middle as well, but someone (THANK YOU whoever you were!) convinced her that Farmville, was a far cry from Petticoat Junction (ok, not that far a cry, but still) and she reconsidered. (My sister was instead given the name Mariea Kae-beautiful, but a spelling nightmare! Most people would have spelled it Maria Kay but my mother isn't most people, and certainly my sister is like no Maria I have ever met!) The only two names I do know of, that are at least as southern as my own, belong to my two aunts, Peggy Lee and Linda Gail. Don’t you think they go with Tammy Jo like peas in a pod? Trust me, with names like these when we said we were from a town named Farmville, no one was surprised! Folks just nodded and smiled a knowing little smile that somehow said, "Well of course your are, sweetie pie!" My Mom on the other hand got this amazingly regal, timeless, long, and beautiful name, Ann Victoria. I have always loved it. My grandmother is Lelia Christine and my great-grandmother is Lelia Virginia. I am both grateful and appalled by the fact that neither my grandmother, nor my mother, her two sisters, her sister-in law, my own sister, or my cousin Shell named their daughters Lelia (pronounced leel-yuh) Appalled, because it is such a beautiful, and unique family name to pass on, and grateful, because I have ALWAYS wanted it to be the name I give to my own daughter. Lelia Victoria Todd, Lily for short. The worst possible outcome of this wretched disease would be if it robs me of the chance to do that. (In which case I will just insist that Charlie use it if he has a daughter!)

So, back to my name, Tammy. When I was growing up, Tammys were EVERYWHERE. There were at least 4 in my high school and 3 or more in my sorority. But in the 5 years I lived in DC, I did not meet a single one. It is a southern name, proved to me beyond a shadow of a doubt when I moved to Charlotte. They were EVERYWHERE and THEN SOME. I met one on every street corner, the clerk at the grocery story, the gal who did my nails, the hairstylist in the next booth. In the first year that I lived here I bet I met a dozen. In 2001, there was a flyer stuffed in my mailbox from another Tammy Jo Oakes soliciting the opportunity to wash my windows. I am not kidding.

With the exception of Tammy Faye Baker, and Tammy Wynette (of Stand by Your Man fame) I don’t know of a single Tammy over 50 or one under the age of 35. No one names their daughter Tammy anymore. Most of the mothers of the Tammys I know were inspired by the Debbie Reynolds movie, Tammy and the Bachelor and the hit song, Tammy that was a part of its soundtrack. One of THE most special moments of my wedding day was dancing with my Daddy to that song. He sort of hummed/mouthed/sang the words to me while we danced. When I looked across the dance floor at my Mom dancing with Jason, she was doing the same thing, just sort of singing along under her breath, and watching me dance with my Dad. The photographer snapped a picture of them at just that moment. It is one of my favorites.

Sorry. I completely digress, because based on the title of this blog; you might guess that it was supposed to be about JULIES, not TAMMYS. But, I give you the Tammy stories as way of background because I realized something really odd this week. I have A LOT of friends named Julie. And just like Tammy, no one names their daughter Julie anymore. (Julia, on the other hand, is another of those classic, regal names that is generation-less. My mother-in-law is Julia. There is Julia Roberts, my boss’ daughter Julia, and my friend Kelly’s youngest daughter who is only 6. Julia is timeless. But it is a completely different name than Julie.) Crud, I’m still digressing.

Anyway, here are my JULIES (in no particular order): First, there is my adorable neighbor, Julie Scott. She is a nurse at CMC and has worked many times with Dr. Kamerer’s patients. She took the time to stop in to see me at home the night before my surgery and to tell me what a great surgeon we had chosen. She really eased Jason’s mind as well. She stopped in too while I was in the hospital and she was on duty . . .just to check in and brighten my day (didn’t mind her visit because she KNEW not to stay too long!) Then there is my old neighbor, current friend, former bunko queen, and fellow cancer club member Julie Sparks (no relation to Charlie) She is always positive, shares my wiseass sense of humor, and gives amazing honest advice and opinions. She also just happens to be an all around terrific Mom and friend. As great Moms go, there is also Julie Schwarzenegger (I probably spelled it wrong sorry!) She is Sloan’s mom, great photographer, eternal optimist, and creator of the funniest Halloween costumes ever. Her son Sloan, is one of the “Gateway Boys”—the group of kids including, Gage, and Zach, and John Cole, Blake and Charlie, who started preschool together at the age of 18 months and still share their birthday parties even though they are all in different schools and classes now! There is also Julie Carothers, computer guru in my office, and Julie Brewer, Kelly’s sister, Julie Hartman, my “rush crush” from my sorority days, another sorority sister, Julie Romognoli, two old work colleagues, Julie Shrom and Julie Diamond, and the original Julie in my life, Julie Dawn Walker Riggan: dear old friend (40 years + since church nursery school!) field trip partner, sharer of science projects, keeper of the Honeycomb Hideout, sleepover queen and co-conspirator in many of my youthful transgressions. Also, cheerleader extraordinaire, elephant lover, and sharer of home rooms, Sunday school classes, dance recitals, confirmation classes, and the balcony at Farmville United Methodist Church . . . and currently…. fabulous Mom, daughter, wife and especially friend!

Where do they all come from? Why are they all nice? I have never met a mean spirited person named Julie. Did you guys have a song and a movie too? Why don’t I know about it? Too weird. I have wracked my brain but I do not believe there is another name in my life so well represented. What is the point, you ask? There is not one really. It's just a goofy observation from someone with a lot of time on her hands, who is using it mostly to think about all the cool people in her life. (Incidentally, I also know a lot of Scotts and Susans too, but no where near as many as my Julies) So, a little challenge for you today: If you are named Julie, do you know who you were named for or why? Will you share? If you are named anything at all, is there another name that occurs in your world like Julie does in mine? Just curious. Humor me. I’ve got time.

Liar, liar, pants on fire!!

Damn, this disease will do that to you—make a liar out of you I mean. I have already learned that it is best not to say, “I would never do that . . .” at any time during the treatment for cancer because LOTS of things change and pretty soon you are doing every single thing that you said your wouldn’t. (Like getting the tooth out, putting in the feeding tube, radiating the left side as well as the right and . . .heaven only knows what’s next!) All my proverbial lines in the sand have been crossed! I do, of course, have yet another line to draw regarding my radiation oncologist of choice, but we will get to that later. I am embarrassed to tell you that after all the bitching and moaning, pulling the tooth was a breeze! Absolutely no pain to speak of as long as I take the meds as directed! Lori dropped me off and M.A. picked me up, a mere 45 minutes later. (Thanks girls!) Had a big steak dinner last night—just chewed on the other side. No problem!

Regarding my new line in the sand—pitched yet another little fit and got THE radiation oncologist that I had wanted all along, but not without going over, and through, the nurse practitioner bull dog who couldn’t seem to hear my requests! Did mean though that I had to put the appointment off until NEXT Thursday instead of tomorrow. (I will get the “mask” made that day also!) Means too, that I will have to travel into Charlotte for radiation instead of doing it at Lake Norman (many apologies to those of you who have already offered to drive me on some of those days!) but ultimately, I only get one good shot at curing this and I want the guy with the most experience!

That’s about it for today. I will post again before the end of the week. Does indeed look like we will begin treatment on 7/6. Peg tube placement and all the hearing tests etc the week of the 29th,and blissfully . . . next week: some down time with only the Thursday radiation oncology appointment. Charlie and I may head up to Virginia to spend some time with my family during the early part of the week (my Dad broke his leg over the weekend in 3 places and needs some cheering up!)and then Jason and I may try to get away for a few days around all those doctor's appointments the next week while Charlie is at Nana Camp (visiting with Erik’s mom)!

Thanks for checking in on me! Have a blessed day!

Cancer 101

****WARNING: this is a LONG post!****

A couple of housekeeping issues: 1)My early posts were written under the influence of some pretty awesome pain meds! I did not mean to imply to anyone that I didn't want to hear from you on email, via phone, text or through all the amazing cards I have received in the regular old snail mail. I LOVE hearing from every one of you! What I did try to suggest, is that I (and I believe MOST people) do not enjoy visitors when I feel crappy. Please visit me when I am well! 2) If you are still having trouble commenting on the blog, I'm sorry. Just go to the Google home page and register for a Google account. You have to do that, and log in, before you can comment. If you prefer not to, then just email me at tjoakes@bellsouth.net. I know there are lots of "lurkers" out there who never comment, and that's O.K. too!

So now for the post:

Cancer 101

In a way, it is much easier for me to negotiate the cancer landscape than it would be for most people. I sold drugs for cancer for several years (the drugs treated things like melanomas, brain tumors, breast and prostate cancers). Like all my pharmaceutical training, the study of the disease itself was incredibly intense. As a result, I know a lot more than I care to about how cancer grows, spreads and ultimately dies. I also spent 15 years in and around hospitals and physicians. They don’t intimidate me. The hospital is just a crappy hotel and doctors are just people . . . . .I went and married myself one, so I can tell you that they are human and that they make mistakes like everyone else . . .so . . . I challenge their decisions and suggestions at every turn . . .NOT to try and be difficult, but to make sure that they have really thought through what they want to do to me next. Let’s face it--treating patients is just their job. Haven’t you had days at yours when you weren’t as mentally alert or as “in to it” as others? Well, I don’t intend for that to be MY day at the clinic. Also, doctors speak a different language. They don’t mean to, they don’t even realize they are doing it . . .go back and read Jason’s post about my surgery and you will see what I mean. (Most days he speaks in perfectly understandable English but when he talks about anything medical he reverts to “doctorese” without even noticing it.) They certainly don’t mean to talk over the heads of their patients, but the words and terms and ways of describing things are so ingrained into their vocabulary that it doesn’t occur to them that people outside of their world have no idea what they just said!

If you too have an intimate association with this disease, then you can STOP READING HERE, but after 3 different conversations with friends and family members this week, it occurred to me that a lot of people have questions about how I got this and why I am getting 3 different forms of treatment (surgery, radiation and chemo) and why all 3 together STILL might not work . . . and some more specific questions too, like why they only took out my right tonsil and why I have to have my wisdom tooth out (YES, I’m having it out-tomorrow in fact) before radiation. So, here goes . . .Tammy’s Cancer Primer. Everthing you need to know about the torturous things they are going to do to me next and why . . . .

What is cancer anyway?

As I explained to Charlie, Cancer cells are basically like misbehaving children who no longer follow the rules that their parents set out for them—for some reason, they start to grow out of control. There are many kinds of cancer, but they all start because of out-of-control growth of abnormal cells.
Normal body cells grow, divide, and die just as they are programmed to do. Cancer cells don’t do that--they resist dying, and they don’t grow up into normal adult cells and do what they are told. Instead they act like teenagers forever, growing and dividing and wreaking havoc wherever they go. And that is another thing they do . . .they go places. Normal tonsil cells stay in the tonsil, just like normal breast cells stay in the breast. Cancer cells though (because they are damaged and dividing like crazy and acting like teenagers) have the ability to break off, sneak out for the evening and wind up in other places. Scarier still is that they have at least 3 ways to hitch a ride. They can 1) invade other tissues—like the cells from my tonsil just growing into the cells on my tongue –weird. 2) some of them can travel into the blood stream and 3) still others can travel through the lymph system.

Oh, yeah, the lymph system, what does that do again?

The lymphatic system is a system of thin tubes that runs throughout the body. These tubes are called 'lymph vessels' or 'lymphatic vessels'.
The lymphatic system is like the blood circulation– the tubes branch through all parts of the body like the arteries and veins that carry blood. But the lymphatic system carries a colorless liquid called 'lymph'. Lymph is a clear fluid that circulates around the body tissues. It contains a high number of lymphocytes (white blood cells). Plasma leaks out of the capillaries to surround and bathe the body tissues. This then drains into the lymph vessels. The lymph system does four basic things. It 1) drains fluid back into the blood steam from the tissues. 2) filters lymph 3) filters blood and 4) fights infection. When it comes to cancer it is the draining and the filtering of ‘lymph’ that matters.

As the blood circulates, fluid leaks out from the blood vessels into the body tissues. This fluid is important because it carries food to the cells and waste products back to the bloodstream. The leaked fluid drains into the lymph vessels. It is carried through the lymph vessels to the base of the neck where it is emptied back into the bloodstream. This circulation of fluid through the body goes on all the time. The lymph nodes filter the lymph fluid as it passes through. White blood cells attack any bacteria or viruses they find in the lymph as it flows through the lymph nodes. If cancer cells break away from a tumor, they often become stuck in the nearest lymph nodes. This is why doctors check the lymph nodes first when they are working out how far a cancer has grown or spread. This is because there is a natural circulation of tissue fluid from the organs through the lymphatic system. (This is not the same as having a cancer of the lymphatic system, such as lymphomas—that is a whole other story.)

Cancers also often spread to the lungs and the liver and less often to the brain and the bone. If you think about it, it makes sense from a blood flow perspective. This is because the blood from most parts of the body flows back to the heart and then to the lungs before it goes to any other organ. Cancer cells that have found their way into the bloodstream can get stuck in the tiny capillaries of the lungs. Also, many types of cancer can spread to the liver. It is most likely to occur with cancers of the digestive system because the blood from the digestive system circulates through the liver before it goes back to the heart. (This is why they were worried about weird stuff showing up on my liver scan but also pretty confident that it was nothing because it would be odd for it to have spread to the liver before the lungs when it started in the tonsil.) The spread of certain cancers to the bone and the brain is harder to understand. There is lots of research going on to try and explain why and how some cancers travel there.

My particular cancer.

So, MY cancer started in the tonsil and then traveled via invasion to my tongue AND also, by breaking off and being filtered into the lymph nodes on the right side of my neck. Dr Kamerer cut out all of it that he could see from my right tonsil and on the base of my tongue –he could actually see an area that looked “wrong” and he could easily see the 2 swollen lymph nodes but there was no way to know if there were still a few (or a lot) of microscopic cancer cells floating around in there that could not be seen. He took out part of my thyroid because it "lit up" on the scan . . .it turned out to be nothing (which was awesome!) but even before we knew that, we knew that if there was cancer there, it was a 2nd cancer--because cancer of the tonsil does not travel to the thyroid. He also took our 29 lymph nodes in my neck and only found cancerous cells in 2 of them. That is great news. But still, there is no way to be certain that there aren’t 1 or 2 misbehaving teenagers still out on their lethal joy ride. Hence, the radiation, directed specifically at the areas where we know there were cancer cells lurking around, and the chemo---poison for ALL the cells in my body—to take care of any really wild children who may have floated off to other places or to weaken those cells enough so that the radiation can kill them. That, in a nutshell, is why I am getting all 3 forms of treatment.

Lastly, the answers to the questions that I get asked most often: 1) we need to pull the tooth because radiation destroys all kinds of things close to the field, like salivary glands and blood flow to the jaw. This means that if I had a tooth issue in the future (even 10 years from now) it would be MUCH more difficult for it to heal and have a much higher risk of infection. 2) we need to put in the feeding tube because they are radiating my throat and will effectively turn it into one big oozing burn for about 8-12 weeks. The feeding tube will allow me to get nutrients (and pain meds) even if my throat is way too swollen/sore/raw/painful to swallow. Ever had a bad burn? Remember what that feels like? NO FUN! We will keep the tube in for at least a month after treatment is over. 3) the left tonsil did not need to come out because the drainage was to the lymph nodes on the right. Drainage from the left tonsil would have gone to the lymph nodes on the left. We left that tonsil alone for better healing and quicker recovery and because we will radiate it and hit it with chemo anyway.

I think the only thing I didn’t touch on is how I got IT and why. Short answer: who knows? I have none of the 4 main risk factors for this kind of cancer: smoker, heavy drinker, male, over the age of 55. Though some cancers have a genetic link, most researchers believe that the vast majority of cancers are triggered by something environmental, (something outside the body.) We obviously know that substances like tobacco and asbestos, and the sun’s own rays, can either damage the cells, or trigger already damaged ones to begin dividing. There is also a lot of research going on now regarding many viruses that can do the same thing. We know too, that the older a person gets, the more likely they are to get cancer—fact is, it takes a long time (years and years in many cases) for the abnormal cells to mutate into cancer cells that can do a lot of damage, so the older you get the more time you have given the cells to misbehave.

In reality, it is completely unlikely that we will ever know the how or the why of my particular cancer but it would be pretty cool if someday they could figure it out for ALL of them, not just this one. (Then we could really think about prevention, and not just treatment.)

Here is a sobering thought to close with. I bet these numbers will surprise you. They are, unfortunately, VERY real. 1 in 4 of us will die from cancer. (Please just know that I don't intend be that "1", so I'm not helping your odds any!) 1 out of every 2 men (yep, half!) will get cancer in their lifetime, and nearly one in every 3 women. So while it seems shocking and bizarre that I should have this thing, it isn’t really that uncommon , and to me, that is the most shocking and bizarre thing of all. So do me a favor, keep me in your prayers, hug your kids, tell them that your love them and don’t put off the things you always wanted to do. For right now, you’ve got time. Don’t squander it.

I get by with a little help from my friends . . .

Wow! I am under some pressure now . . .I have started several different blog topics in Word to be "cut and pasted" later into this blog but since I made a big deal here about the grammar, I have to go back and check and recheck and they haven't made it here yet--they will though, I promise. For today though I want to share a couple of quick medical facts . . .

First and foremost, the team agreed with my expert medical opinion that the liver scan did not indicate any cancer but just something random! We are going to rescan in 3 months, but not do anything else (ie biopsy) until then. Yippee! This is great news, it means that it is likely that the cancer has not spread anywhere beyond the head and neck area and SHOULD be very curable with radiation and chemo. In this case, the chemo does not have to kill the cancer cells but just weaken them (if there are even any left that did not get cut out!) so that the radiation can kill them.

So, we met yesterday with the medical oncologist and his team to discuss the chemo regimen. The drug they are going to use is called Cisplatin. It is the only chemo drug for head and neck cancer in combination with radiation that has 3 clinical trials supporting it. The plan is what we expected. 7-8 weeks of radiation, 5 days a week with 5 days of chemo overlapping on weeks 1 and 5. Those will be the long days of my treatment with radiation early in the morning (the radiation part is actually very fast--less than 30 minutes in the clinic) then the chemo infusion, starting at about 9 am and lasting 5-6 hours.

Over the last several weeks I have been doing a lot of research on the drug's side effects and I had/have some particular concerns about ototoxicity (hearing loss). Many of you already know that I have about 70% hearing loss in my left ear as a result of a condition called Menieres disease (lots of the women in my family have this, it is an inner ear condition . . .like motion sickness to the Nth degree, balance issues, spinning, nausea etc . . .sometimes for hours or days at a time and sometimes just for 30 seconds) In a few people it affects their hearing as well--lucky me. I manage it just fine with a tube in my left ear that my ENT injects steroids through a few times a year, and the hearing loss isn't much of an issue except in noisy restaurants or when someone is trying to whisper something to me from the left. But . . . .if the Cisplatin should cause more hearing loss then . . . .problem. After a lot of discussion, we came to the conclusion that it is just going to have to be a leap of faith. Risk and reward so to speak. We are going to do a hearing test prior to beginning the first treatment and another after that first week of chemo and just see what happens. We still don't have a firm time line for beginning the treatment because there is a lot of prep work before the radiation can begin.

First, the radiation oncologist that I was committed to is out indefinitely because of a medical issue of his own, so now I need to meet, and get comfortable with the new guy. Then, they will design the "radiation field" and construct a mask (think hockey goal keeper made of mesh or fencing mask) that gets bolted to the table with my head in it to direct the radiation to just the right spot--I know . . .fun! Add to that, chemo "training day", the wisdom tooth getting pulled, replacing the tube in my left ear, and the overnight hospital stay to place the feeding tube in my stomach, and you can see that it will be a couple more weeks before we are ready to begin. Still may make it that week of July 6th but probably the week after. Then, an 8 week sprint to the finish-plus another 6 -10 weeks of recovery. I don't expect another "medical" update here until next week and my meeting with the radiation oncologist.

Would like to share one more thing . . .of particular note to my high school friends . . .YES, I was this clever in high school . . . but with Brad and John and Pam to compete with who knew?!! Most people who know me, have at some point heard me tell the story of my idyllic childhood . . . Mom, one of 5 kids, Dad ,one of 6, all my aunts and uncles and cousins living close by and totally involved in my life, all 4 of my grandparents alive and spending time with me until I was out of college, graduated in a high school class of 70 people--with at least 50 of the kids I started 1st grade with. Amazing! Well let me go you one better. I graduated from Prince Edward Academy 26 years ago. It has been over a quarter of a century since I have seen these people on a daily basis. Last year, as our 25 year reunion approached, we all waxed a little poetic about how cool it was that we all still stayed in touch, shared Christmas cards, saw each other when we were back in town. Because we all shared this same experience, maybe we take for granted a little bit, just how remarkable it is. . . .but when I mentioned this number to several of my local friends this week . . .they were AMAZED by it. Here is what I want you to know. I have heard from almost 30% of my high school class!! Cards, emails, phone calls, text messages, facebook notes, comments on the blog. 30%!! I am so honored and blessed by that. I have always had amazing friends but there is something about OLD friends, the people who knew you when. I love you guys--thanks for loving me back! (Keith, tell Paige we're thinking of her and give Logan and that beautiful little Michael a big hug for me!!) That's it for today . . .make it a great one!

Quick Note . . .

Not much to report this week until Thursday and all the consult meetings for chemo, feeding tube etc. Since I posted last, I have come off all the prescription pain meds which has allowed me both the ability to drive and to poop again on my regular schedule (after my morning cup of coffee!) I have also had another dental consult with MY regular dentist and now have some decisions to make regarding a plan for the wisdom tooth--conflicting opinions from my guy and the team of oral surgeons at CMC. (the CMC team now thinks it is ok to leave it but my dentist hopes I will take it out--AHHGGG!) For the record, I HATE "the dentist" but LOVE mine! Michael Wilhite at Davidson Dentistry--he rocks. LOTS of my friends go there too.

Tomorrow is the last day of school and Charlie can't wait. Jennifer, Suzy and Lisa are taking him to Carowinds on Thursday while I make the rounds of Dr's offices in Charlotte. Thanks girls! I will report some real info then. Night night.

Another day . . .another scan . . .

Quick post today. Just wanted you to know that I had the MRI this morning and that the results were sent over to Dr Frenette's office and . . . he, of course . . . . .is off on Fridays! Naturally. So, I pitched a little fit with the nurse and had her fax ME the report. (She was not all that happy to do so) anyway, based on my expert medical opinion. . . .the scan looks good and still doesn't show any indication of metastatic disease! Yippee! Of course, they listed the results once again as inconclusive and recommended . . . you guessed it . . .another scan. At $4000 a pop, I have to believe that sooner or later my insurance company will put an end to it. We'll see.

I also did the dental consult today-- a much longer blog will be required for me to cover that one. The "expert" dental resident is of the opinion that I should have my one remaining wisdom tooth pulled . .. the one that has never descended, is completely encased in gum tissue and has never, and likely will never, given me one bit of trouble. Let's just say that they will have to offer up a much larger number than her stated 1% risk of increased infection IF I have to have it out at any time in the first decade after radiation for me to go along with this one. They have almost completely convinced me that the feeding tube is a good idea, they may yet convince me that left side radiation is a good precaution in addition to the right side, but I am drawing the proverbial line in the sand regarding this tooth.

I promise to write something clever over the weekend but just the facts for today. Have a great weekend!

*** Grammatical footnote: Percocet is spelled with a C not an S (I may or may not edit my earlier posts to reflect this but it's important to me that you know, that I know, that it is incorrect.) One of my biggest pet peeves is incorrect grammar and spelling on the web--people are just so lazy--I know there are some other areas of concern in my earlier posts but they are mostly TYPING errors and not because I don't either know better, or have the sense to use spell check. When I am bedridden and have nothing better to do I will go back and make them all grammatically perfect!

This too shall pass . . .

(Written on 6/3 and posted on 6/4)

I have very vivid memories of the last time I spent so much time in and around hospitals. It was a little over 8 years ago when Charlie was born.

My water broke on Friday night/Saturday morning at 12:45. He was born 2 hours and 45 minutes later at 3:30 am at Lake Norman Regional Medical Center- 4 and 1/2 weeks early. I was in the hospital bed for 9 minutes before his little red head made its appearance.

There was not time for an epidural, the episiotomy was a slice between contractions. During those 9 minutes I blew out most of the blood vessels in my eyes, pushed so hard against my own hands holding my legs open that I had 2 perfectly shaped hand-sized bruises on my inner thighs, and one each of the nurse’s hand and Erik’s hand on the bottom of each of my feet.

Less than 30 hours later I checked myself out of the hospital so I could go to Charlotte to be with my baby , who had been transferred to the NICU at Presbyterian . . .I remember that there was some discussion about whether or not I could leave because I had not had a bowel movement yet. The BM is very important to all people medical—they want to know that your gut is working. At the time, mine was not, and I didn’t care. I was going to Charlotte , poop or no poop.

About a week later while Charlie was still in the NICU and I had been driving back and forth there twice a day, pumping milk at home, freezing it, taking it in, not sleeping for pain and worry etc etc I burst into tears in front of Erik over something completely unrelated and he said, “What is the matter with you?” “What is the matter with me?” I said. “My baby is in the hospital 20 miles away, my body aches all over, my nipples are one giant blister from the breast pump and I haven’t pooped in a week! That’s what’s wrong with me!” This was not recounted in a normal tone of voice.

I will NEVER forget the response. “You haven’t@#%^ pooped in a week? What do you mean? How is that possible? How can anyone go a *&^%$ week without pooping?” This was said with a bit of shock and amazement in his voice. Pushing out the baby with no pain meds didn’t impress him, the blown out blood vessels, hand shaped bruises, sleep deprivation , etc. etc. were of no concern, but NOT POOPING for 6 days was huge!

And now, I have broken my own record.

Every day that I was in the hospital, they listened with a stethoscope to my gut, hoping to hear what they described as “normal bowel sounds” My farts were applauded in a way they haven’t been since I was a baby. (Remember that with your own kids?) and still when last Friday came around and I was ready to go home there was some concern about whether it was ok----having not had the big BM and all.

So . . .I lied. Sort of. Not really. Ok, I lied. The nurse said, “Bowel movement?” and I said, “Sure!” Now I am pretty sure that she was asking IF I had had one, and I’m pretty sure that she took my answer to mean that I had, but what I really meant was, “Sure, that would be lovely, can you order one right up?” Anyway. I busted out of the joint and here I am 9 days later.

I did actually confess this to Dr Kamerer on Tuesday when he took out my stitches and he chuckled a bit, said it was a big side effect of the pain meds, that I should drink more, that I should walk more and that this too would pass. (pun intended)

The good news is that I have probably only eaten about 2 1/2 days worth of food in the last 9 days so I’m not in any real discomfort. I have taken all manner of helpful over the counter meds to speed the process along and everyone in the house has become as intuned to my BM’s as the hospital nurses with their stethoscopes. Jason casually asks if “I had any luck in the bathroom?” when he calls to check in on me from work. Mom raises her eyebrows in question when I return from going pee, and Charlie, who is the king of poop conversation even in normal times, assures me that he is “sure that I will feel better if I could just poop---sometimes pooping just feels so good ,Mom, you know? It makes you feel all cleaned out inside.” I explained that I did, in fact, know this to be true, and that I was sure that he was right.

Not long after I began writing this post, during dinner, I felt a funny sensation (not funny really just one I hadn’t felt in a while) and I excused myself to the bathroom, when I returned, a surprisingly short time later, my entire family looked up at me expectantly. “Yeah! Success! The poop cometh!” I did a little happy dance. Jason cheered. Mom smiled, and Charlie said, “Gee Mom, you sure are excited about a little poop.”

Yes, Charlie I am.

The scan . . .

Sorry sorry sorry!  I know I got you addicted to checking on me here and then I didn't post yesterday about the CT scan of the liver.  Again, sorry!  The scan results were actually very good but . . .inconclusive. They found 3 small areas in the liver that raised some concerns but none that appeared to be "evidence of metastatic disease".  This is great news about the current cancer but of course the radiologist is not willing to call it "just nothing" so he has recommended another scan - -an MRI-- that we are trying to schedule on Friday.  

I did get the stitches out, not that it matteredd much,  the incisions look exactly the same--only the little black threads are missing.  Last night I just felt terrible. No real explanation for it, a little, groggy, a little dizzy, a little sad, a little tired,  a little hungry . . . .nothing really wrong but nothing really right so I laid on the sofa from after dinner until time for bed. (that's why no blog post) This morning I feel a TON better.  I guess some days are like that.  I will try to post again later today but that's the quick update!  Thanks for checking on me!