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!