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.