Alleluia! We made our last daily trip to UVA yesterday and feel like we have been sprung from jail! Tom is incredibly weak and gray-looking, but happy to be home. Those long drives took a lot out of him.
We are to let him 'cool' for about 2 weeks before a scan, and our appt with the surgeon is on NOv. 11th. The radiation doc said we'd be discussing surgery or the 'wait and see' option (!?)....didn't think we'd have an option from all I've read from all of you!
You would not believe the 'welcome home' we received! Our driveway is about 1/2 mile long.....Tom's company (he owns a landscape contracting co.) came out and put up a huge "FINISH" line, complete with an arch of balloons towards the end of the drive, and then lined the rest of the drive up to the garage with signs and balloons......awesome and overwhelming...! There were huge balloons and "We Love and Miss You" signs in the house..and one of our Mexican laborers planted a big ol' boot with fall plants...really neat. An arch of balloons was above the mantle, even had a huge bouquet of balloons in the bedroom!
What an emotional homecoming. Could hardly take it all in, but the love was wonderful!
I'm off now to take him to the LOCAL doctor for his blood problems. this, as least, is an easy ride!
Love to all of you, and thank you for your terrific support and the wealth of information you have provided. I'll keep you posted on what happens next......
Nicki
Congratulations Nicki and Tom!
You must be a great couple to have so many people care about you so much.
Onward and Upward guys.
Take care
Marica
Nicki,
Congratulations to you and Tom! Even though it's been years, I still remember that "sprung from jail" feeling.
As some of the others here have said, the recovery process can be slow and sometimes frustrating after the radiation stops, but hopefully it won't be too long before he starts to see some improvement. At least you now have some respite from those long daily drives!
Cathy
Congratulations on making it to the finish line. What a marvelous surprise from his employees. Must have lit up both of your days. Certainly lit up mine.
I remember that marvelous feeling - NO MORE MASK - on the last day of treatment and I only had to drive 5 minutes to get to my treatments. They will never get something over my face again.
Again, congatulations and enjoy
Eileen
Congratulations Nicki and Tom
What a joyful welcome home. I felt very proud of myself when I completed radiation and now know that it was worth it. My clinic tends to the 'wait and see' approach.
Love and light from Helen
Nicki, I'm so pleased for both of you. Please keep in mind that the next 2-3 weeks will be a little difficult, but you are almost out of the tunnel at the end of which is a light. It sounded like your welcome home was very emotional, that's a good thing. One thing about this disease is it sure brings out the emotions in people. As far as the surgery goes, I recommend Tom have it done as it is very simple compared to rad and removes any chance of this cancer coming back. After all, if it is surgically removed, it can't come back. A different one may develop, but this same one will be in the pathologists trash after he tests it. I get great images of mine in the trash and then being thrown into the furnace for an appropriate ending. At any rate, I have been waiting for this posting since your first post a few months ago, congrats to you both.
Nicki (Tom, too),
I was smiling, sobbing and cheering as I read your post. Tom is surely the type of person I would like to work for based on the wonderful celebration at the finish line! It was so much fun to travel this journey with you and I am honored that you kept us all informed along the way.
I had the "wait and see" treatment, too. The scans have shown no signs of cancer for over a year but for some silly reason, I am still second guessing the decision to not have surgery. If I knew what I know now about this dreaded disease, I believe I would have opted for the surgery after radiation. Just my two cents worth.
I trusted my otolaryngologist since he had the experience and mine was already stage IV with 2 lymph node involvement.
I know today was in important milestone and you should stop and enjoy the moment. All I really remember from this period of treatment was running to the toilet because when I looked in the bathroom mirror, the image I saw scared me a little. My wife nicknamed me Jarjar Binks because I just darted across the mirror.
May God continue to shower His blessings on you and Tom.
Ed
Welcome home,
i expect the couch will be well used for a few weeks. Naps are so nice after radiation.
relax and enjoy,
cu,
larryb
Nicki and Tom,
Excellent news to hear that radiation is complete. You guys got a well deserved homecoming. Keep us posted on how things are coming along.
D
Nicki,
Congrats on getting Tom home. I was so happy on my last day of radiation at MDACC when I threw that mask in the trash, rang the bell, and went home. Little did I know that the hard part had just begun. Something about seeing those people everyday and even twice a day and being proactive about getting treated, energizes us. But once treatment ended, I got very depressed for the first time and thought...at 8 AM, " what do I have to look forward to...my noon tube feeding?" I say this not to make you sad, but to prepare you, as others have done, by mentioning that the first few weeks after radiation can be very difficult.
The good new is that once I started taking a walk every day, made sure that a friend or two visited every day, ran a couple of simple errands, and even got some counseling, things rapidly improved.
Best of luck and take care...of both of you.
Danny G.
Nicki,
Danny G. voiced exactly what I was going to post. I hit a severe depression when I finished radiation. I felt like I was sitting there doing nothing but waiting for "it" to come back. I cried all the time and held myself away from my family. It only took me a few weeks to snap out of the worst of it but the feelings of fear were still very strong for months and months. Cancer dominated my every waking thought. That does pass and gets better until we all find our own ways of dealing with it all while enjoying life.
Boy do I remember my last day of radiation.......it was the one and only time my husband and younger children came with me......and I rang the heck out of that bell. I threw the mask away (couldn't believe they asked me if I wanted to keep it) and walked out of there near tears.
I hope it goes well for Tom and be sure to keep an eye on him for depression.
Take care,
Minnie
Nicki and Tom,
Praise be to God! Get thru the next few weeks slowly with lots of naps and slow walking and things will get better!!! I am so happy for you both and may God give you strength as recovery begins!
Deb
Dear Nicki and Tom,
Congrats on such a significant milestone!! I'm about 5 months post-radiation now, and even though I'm a dentist, and even though my CA center told me what a rough road it would likely be, it still was more difficult than I ever imagined. My recovery has been slower than I would like, but I am getting better. Plus, we're all different, and recover at different rates. I wish for Tom a speedy recovery! God bless you both.
David
Good morning, All my wonderful friends
I'm going to stay home with him today...he's asked me to, and I could use it, anyway. You all are so right in saying that feeling of 'doing nothing' kind of hits you. And, believe it or not, we had become attached to the health care team, and miss them!!! And this after one day???!! Of course, I WAS baking things for them all the time, and that was the only cooking exercises I'd been doing for a long time, so that might be my reason for feeling like I'm 'doing nothing!'
We have to go out today for more blood work, but that won't be a big deal. Yesterday afternoon, about 7 people from his work came by and we had a short business meeting....brought Tom up to speed on several projects, the forecast for the next quarter, etc, etc. I did most of Tom's talking; he's getting good at sign language, however!
It was a GREAT meeting and surely did a lot to lift Tom's outlook. Thankfully, even without Tom at work (or perhaps BECAUSE he wasn't there!
), this looks to be the best year the company has ever had.....God is good!
Tom and I BOTH agree, Ed and Kirk, that we will listen to the surgeon, but that the removal of the offending tissue seems like the right thing to do.........
I'm already anxious about the scan and I don't even know the date!!
Love you
Nicki
Nicki,
If you feel you need to keep baking to maintain your routine, I can always give you an address to send them to. I am only offering this as you slowly wean yourself from this routine you have become accustomed to.
Ed
Ed, I would be honored to bake something for you. Cooking is one of my passions - and you can imagine how bored I've become with having anyone to eat dinner with me
I think you all could qualify as a health-care clinic! Everything you've said has come true....I'm the one becoming depressed....Tom at this point is just BORED....... I'm SO missing hugs, kisses and cuddles (I'm a real 'feeler,' personality-wise) and all I want is to have MY TOM back the way he was, so we can be back the way WE were! I know it is selfish, but I can't keep back the 'sad.'
Guess I'll go scramble an egg. How exciting...
Hope everyone has a great night (or DAY, as the case may be!)
XO
Nicki
Congrats Tom and Nicki!!!! Glad you guys are across that finish line!!! Keep up the good work...
I'm back living in North Carolina by the way... Glad to be back east
Eric
Hi, Eric - and the rest of my favorite team!
It is a dreary wet day here in Virginia - wish I could have stayed home. Tom is doing much better
, however, so I'm a little less apprehensive about leaving him home alone. He does want me around all the time, and I do believe that is a sign of him still being very much 'on-edge' about the outcome of this thing.
He is taking in generally 6 cans of Jevity a day, along with his coumadin and the laxative stuff they prescribed. He's on 75 mcg of the Duragesic patch and except for occasional break-through, he's doing fine with that. I don't like that it makes him 'twitch' all day long, asleep or awake.
Heavy sigh......instant gratification is not part of this program, I can surely see. Right now I can't even look at pictures of him 'B.C.'
I get too sad. The radiation seems to have done a number on the hair at the nape of his neck as well as his beard. Don't know quite how we'll be able to work around that later on...........
Eric, we are going to Emerald Isle, NC for a week coming up soon. Are you anywhere near I95?
Everyone - please take care of yourselves. Don't know if I mentioned this, but I had a scare with a recall mammogram last week. Thankfully, I've been given a clean bill! God is good.
Love,
Nicki
Nicki,
I have a picture of my mom with my baby girl on my desk right before she started radiation and chemo and I would love to see her look like that again...I look at that picture everyday and its hard to believe that it was less than a year ago that she looked like that. I think it just takes time. Its one of the hardest things for me. I keep expecting her to look like her old self but gaining weight seems to be difficult for her and she just doesn't look as healthy as before. I'm sure it gets better. Tom will start to feel better gradually and soon you won't even remember how hard this time has been for you both.
My prayers are with you!
Dani
Hi Guys, just wanted to chime in, I think Oral Cancer is one of the cruelest in so much as it takes away from your physical appearance and leaves you with scars that EVERYONE can see! Just had my 8 week with oral surgeon, he said he will do a revision of my trach scar and possibly something with the scar on my neck. That one bothers me the most cuz it looks like a chunk of my neck is missing. I have gained back all of my weight and some, SMILE!! I don't want to sound vain cuz I am truly grateful to be alive and I know that God still has a plan for my life, but I do wish I looked my old self again...Take Care and Have a great day everbody!! Love, Carol
Sorry, I posted that reply too quickly. Anyway, on a positive note, I am able to do pretty much everything I did pre surgery and radiation and for that I am unbelievably grateful!!! God Bless!!
Nicki,
The hair and beard stuff will most likely return to normal. I had not cut my hair this year because the radiated area in conjuntion with the chemo created a little swatch of curls. Being asian descent, I have never had even a slight curl in my hair. I wanted to trim it up a bit for a job interview and the cutest of the curls are gone
. Of all the things, I wanted this one thing to not go back to the way it was before cancer. God certainly has a sense of humor!
We had a family portrait done just before everything started and it is prominently displayed where we all see it as soon as we leave our bedrooms. I may still look a bit "undernourished" compared to the picture but I planted some winter rye that will look like a golf course all winter and get cut 1-2 times a week and a bit over a hundred flowers in the front flower beds. I missed that the past two winters with various illnesses. (I sneaked a peak at the flowers twice already this morning
.)
I am glad to hear the mammogram was good!
Ed
Boy aren't you the optimist! I have "holes" in my beard where the main beam entry points were and the hair from the bottom of my chin to the top of my shoulders is permanently gone (except for a few very annoying hairs on my adams apple -but maybe that bodes well for the thyroid).
Many of the hair follicles fell out. It also killed all the skin tags and I don't snore anymore. Better living through mad science :p
Nicki, about the hair at the back of Tom's neck, I, too, had what the techs referred to as the "radiation hairline" but it all returned to normal. I wear my hair up most of the time so the hairline is exposed to all and I would never do that if it were as crazy looking as it was. Yet another thing that just takes time.
Nicki,
Hair follicles lost to radiation don't grow back. Like Brian, I could grow a goatee, but the part of my beard on my lower jaws will never grow back. (not that I mind...it leaves less area to shave, and the skin is as smooth as a baby's).
It took a while, but even with my limited diet, I have gained back as much weight as I want...the waist in some of my pants has gotten tight. I feel like I am strong and still play a lot of golf, and can hit the ball as far as I ever could...subject only to my less than perfect golf swing!
Yes, the boredom is one of the worst things about the recovery period after radiation treatment ends. I read a lot, took a daily walk, napped a lot, and even got to where I liked the rap music T.V. shows that came on in the afternoon that my teen-aged son turned me on to. Go figure.
Anyway, things will no doubt improve for Tom, and for you as well in time. The good news is that interest in intimacy returns as well.
Take care,
Danny G.
Hi, All..
Tom's first 'day out' didn't go as well as we'd hoped. A friend came by to visit, and ended up driving Tom to a party being held at Tom's office. Tom's been asleep since I got home, but the friend called to tell me that Tom got sick on the way in - - but insisted on getting to the office. From what I understand, he was able to stay around there for about one hour, and a co-worker brought him home. Guess he's been asleep since.
I'm glad he got out - he hasn't seen some of his employees since September - and hope the episode of vomiting doesn't deter him from venturing out again. A very good friend is testing for 6th degree black-belt tomorrow night, and I know he wants to be there. I'm not so certain I want him in a poorly-ventilated dojo with a lot of people, some of whom you KNOW will be carrying something!
QUESTION - Is a CTscan a definitive test, or would another PETscan be needed to see if there are still 'hot spots?'
Talk to you all soon. This is a big ol' lonely house with just me rolling around in it.....having him up and about will be a good thing!
Nicki
No scan is definitive. It is only a piece of the data and subject to interpretation. The visual and palpation exam are equally as important.
Tom's doing pretty good - I didn't go out in public places at all until June (my treatment was concluded in March). He's taking a small risk with a compromised immune system.
One day at a time Nicki
Thats the way it goes.
Sending good wishes and positive thoughts your way.
Marica
Talking about hair loss as a result of radiation, I consider myself really very very lucky that I not only kept all my hair but it grew even stronger and healthier after radiation. I was prepared to lose most of my hair during treatment as I was already warned by my doctors that the possibility was high due to my intensive treatment of both chemo and radiation. So before my treatment started, I spent a lot of money getting a wig for myself. Really expensive because it was made from genuine human hair. I am that kind of woman who dosen't want to appear different and get people's sympathy. Surprisingly, apart from normal hair fall off after washing, nothing changed on my head. That's why when I returned to my work after a few months, some naughty colleagues came to pull my hair to see it was a wig!They were 'disappointed'
So the wig is still lying in my closet and hopefully it will be there forever and that I won't need it for the rest of my life. My friend who received radiation only to his neck area did lose hair at the back and a letter M appeared. It took quite some time for the hair to grow back in that area. Since he is a man, he doesn't care too much and just tells people with amazing looks that it is the latest hair style for mature guys.
Sometimes a sense of humor can be a good medicine.Be patient Tom,things will get better.
Karen
Nicki,
I went back to work a couple of weeks after radiation and actually worked for about 2 1/2 months before the fatigue kicked my butt. Of all the things that I remembered, one day I was heading back just before Christmas (work was 400 miles away). I had not planned on coming back so I asked someone for a ride to the airport 2 1/2 hours away. As we were getting ready to go, I threw up violently and was so embarassed. This guy that worked for me was so nonchalant about it but it still bothered me. He is still the only person in my life that has seen me throw up at work. Lucky him, he got to see it several times.
Tom is really doing well and you are so awesome!
Ed
Hang in there Nicki,
There will be lots of time for you and Tom. Tell him to take it easy. Don't want to see him picking up a bug. Time to heal. Be selfish.
Danny Boy