Chemotherapy - Session I

Guess what. I am done with my first chemo treatment! 1 down. 11 to go.


My appointment with Dr Azar was at 9:30. I didn't get in to see her until 10:30. Didn't really talk about anything. Just checked my central line and asked if I needed pain meds. Darren went with us and she told him, "No one calls me Doctor, just Azar." I don't know how long it will take me to get used to that though.

Next, went over to the chemo wing... I can say that 'cause it really is a whole wing on the 12th floor with an awesome view of the city. Met my nurse - Stephanie who gave me some pre-chemo meds (8 pills!) and eventually got my chemo hooked up. I guess it takes a while 'cause the pharmacist mixes it right there at the time of the appointment. But the drip actually only took about 2 1/2 hours.

Then, the pharmacist came over and explained my take home meds (pills) and the pump that I will wear for the next 48 hours. I am stylin' with my new fanny pack! I think everyone should have one and wear them whenever we are together. Wait till I put the sequins on it... I think this calls for an extra special craft night.

And then the nurse came back, unhooked the IV meds, hooked up my pump (see Note Below) and changed my bandage. My dad picked up my scripts for me or we might have had to wait a bit longer. Anyway, afterwards, I was hungry so we (me, mom & Sheila) stopped at McD's for a bite. So after about 6 hours total, here I am.

I don't feel too bad. A bit hot, and a bit of a headache... And now, starting to feel tired. I am told the side effects will get worse as time goes by so I am drinking an Iced Coke right now! Yay! It does feel a bit weird in my throat, kinda tingly and a bit hard to swallow (but that might just be allergies too :o) - anyway, I will deal with it as long as I can take it :o)


Note Below:
When I was first told about "the pump", I was told it was about the size of a banana. But we joked about not knowing what size of banana. Nevertheless, I decided I would affectionately call it my bananaphone. So anyway, today I got my bananaphone and it doesn't look like a banana at all. Sheila said out loud, what we were all thinking - "it looks like a condom inside a baby bottle". And that my friends, is exactly what it looks like!

Why are my eyes leaking?

This past week I've found myself in a weird daze, I feel like a deer caught in headlights, but not physically. Just in my head. I find myself zoning in and out and thinking about stuff like - ice cream, my toes, co-pays, and tape marks. I come out of the daze and feel moisture covering my eyes and know that if I blink or say anything, surely I won't be able to stop the tears.

I don't, however, feel overwhelmingly sad. Isn't that weird? To feel like I'm gonna cry at any second, but not feel sad? I've always been a passionate - okay, emotional - person. I guess this shouldn't come as a big surprise to me. Maybe that I haven't had any all-out fit of some sort should though. I guess I will reserve that for a later time...

Anyway, today is the last day of "before chemo". BC. Tommy BC.

I look forward to the day when all this chemotherapy business is behind me and everyone thinks I'm my oldself. Really, I do. But the truth is, will I ever be my old self again? I find it hard to believe that I will. Even when I can have Ice Cream and Iced Tea and Cold Soda again. Even when I have the regular feeling back in my fingers and toes. And even when my skin recovers from having tape covering it for six months. How can I be the same?

I hope for all the differences in me, that the good will by far outweigh the bad. That this might make me physically weaker now, but that it will make me forever stronger.

For now, right now this hour - I am going to go pick up Darren from school. Yep, I am taking him out of school for no good reason other than to meet up with my family at the zoo. It's like New Years Eve and we're celebrating. Out with the old Me+cancer and in with the new Cancer Free Me! Oh wait, this is a darn good reason...

Where's my banana phone?

Last Thursday, I told my mom that she could drop me off for the central line surgery and then go back home to take Darren to school. Then I told her I wouldn't be out until about 11 if she wanted to wait to come back till then. The thing is, I wasn't out-out the whole time and I didn't realize how much I would notice that I was alone. Thank God Mondo walked in (unexpectedly) when he did. It was right before they told me about the minor complications. I think I might have had a breakdown if he weren't there. Instead, I laughed. And he took a picture of me bundled in warm blankets.

So honestly, I'm a bit freaked out. I went in on Friday for the class on my central line, and I am not sure what I was expecting... I guess I thought that they were gonna show me how to clean the lines with Heparin (which I am okay with) and maybe show me how to connect and disconnect the banana phone (aka, the pump, which I still haven't seen)... but I found out I have to change the dressing on my own once a week, for the entire time. The nurse was stressing how it had to be sterile cause the line went straight down to my heart and an infection could.... what?!?!?! The first time I have to change it is Friday and I asked Sheila, who is a nurse and who has been going with me to appointments, if she might help me and make sure I don't kill myself.

My first round of chemotherapy is this Wednesday. Two days. I wonder if I will use it as a measure of time? Like, before chemo and after chemo. I do that sometimes... Oh man, we're really going now aren't we?

A few pics...

I mentioned a piece of surgery garb - an aluminum looking puffy hat, that looks like one of those popcorn tins that open up real big when you heat it over the stove - in the post titled The Big Day - Part I. This is a picture Jazzy modeling it off. Sexy! I also brought home the matching blanket.

After my surgery, when I was in recovery, they brought me a bunch of warm sheets because I was freezing. They wrapped one around my head and I fell asleep zoning in and out while I was waiting for results. All the nurses could see were my eyes. This is what I looked like when Mondo walked in. *cheeeese* brrrrrr.....

This is the nurse that taught me how to take care of my central line. She was my first intake nurse in oncology, but I don't remember her name. Paula maybe? I'm sure I will know all their names before long though...


Darren had Field Day for West Denver Prep on Friday. Me and my mom got to go for a bit and watched him participate in a couple events, including one that he got a first place ribbon for - a crazy relay race. It looked like the students had lots of fun.

Minor complications... Ouch! That hurts!

I just got home from the Franklin Medical Center where my outpatient surgery was performed. I am feeling really tired and the area of the incision and my arms hurt a bit, but other than that - doing well.

So, you know how before you go into surgery the doctor comes in and discusses the possible complications... like you have a 1% chance of the such and such puncturing your lung. Or you have a 1% chance of the blah blah blah...

"In this procedure we will create an incision just below your left collar bone. We will push a wire down the vein towards your heart. That's where we want it to be. Then we will push a catheter piece over the wire and pull the wire out. There is, however, a small chance that the wire will go toward your other arm or your neck - in which case we will need to redo the procedure."

Guess what... My wire started out where it was supposed to be. The doctor said it "tickled my heart". He knew this from an EKG? readout. Anyway, I guess at some point, it flipped around and started up towards my neck. This wasn't discovered until after an X-Ray was taken, after I had a few animal crackers and a drink of gingerale. So that meant, not only did the procedure need to be corrected, it had to be done without anesthesia. Yay!

Haha. It wasn't really that bad. They numbed the area a bit and since the incision had already been made, I just had to deal with the discomfort and pressure of the wire being taken out and reinserted. I'm not gonna lie, it hurt. But I was able to get through it just fine. The whole surgery team was sooooo nice and joked with me, which was just what I needed.

So, here I am at home, ready to pass out - but of course, not before I blog. I'm off for a nap.... sweet dreams.

Noticing the "good stuff" -
[x] Jello pudding pops
[x] My funny anesthesiologist, Dr Natalie Conrad
[x] Imperial Dragon Chinese Restaurant

And the winner is...

I heard from nurse Tracey this morning. My paperwork was submitted for participation in the Clinical Trial and I was drawn for the control group - which means I will not be receiving the additional chemo drug Cetuximab. That's the one that I mentioned in a previous blog titled "Freaked Out" cause um, I was freaked out about possible side effects...

So lets weigh the good and bad about this...

Bad

• The only bad I can think of is that should this drug end up being an effective preventative measure for recurring cancer, I will have missed out on taking it as a prevention drug (but it will still be available to treat recurring cancer, so... :o)

Good

• No rashy side effects on my face, neck and back!
• I will go in for treatment every other week instead of every week - already bringing my count of treatments down from 25 to 12!
• Being part of the control group means that I will be given the same chemo regimen that I would have received had I not signed up at all - but, since I am part of the study, one of the three drugs will be funded by the study! That is a huge financial consideration cause I'm told these drugs are pretty expensive.
• I'm still part of the study and will contribute to the findings that may affect a lot of people dealing with colon cancer in the future.

So really what I am trying to say is - I am okay with this.

Noticing the "good stuff" -
[x] Clinical Trials... a must if we're ever gonna cure cancer

Are you a Tigger or an Eeyore?

Tired of me already? Haha! Too bad!

Cheers to another great day...

First, I was able to go to a lunch meeting to meet a potential candidate for the Board of Trustees of West Denver Prep. It was a very small group, but still a good meeting. I feel like I have been withdrawn from my activities on the Board and also on the Parent Council since I started this "I don't feel good" business, but I have no intentions of letting go. This school means too much to me. So hopefully I will be able to get back on track and get my head in the game again. Today was a good start.

Second, I had my pre-op appointment. I met with Theresa Capaci, PA. She is awesome! I had finished my initial intake and was sitting on the exam table waiting for her to come in. She knocked on the door and I sang "come in" and gave a big smile and "hello" as she walked in. My look must have said something like "So good to see you again" because she asked if we had met before and when I said no, she said "Wow, your so bright and happy - especially for what you are going through." And I commented, "Yeah, I think a lot of my friends think I'm crazy."

She went on to mention a guy who was recently seen on an episode of Oprah called Death and Dying. The guys name is Randy Pausch and he is suffering from pancreatic cancer - having been told by doctors he has only a few months to live. She said his philosophy on his time left (in a very small nutshell) is "Are you a Tigger or an Eeyore? Choose!" She said I looked like a Tigger. I feel like a Tigger.

Now, I don't believe for one minute I only have months to live. And the information given to me from my doctors is good enough to support I have great chances of not only living, but of being cured! The sad truth is, some people might hear the news cancer - and maybe they can't help but be Eeyore's. There was one in my chemo class in fact. She was an older lady and by herself. And every question or comment she made sounded exactly like something Eeyore would have said -

• "I already feel nauseous" (after hearing it may be a side effect of chemo and that drugs are available to combat the feeling).
• "With my luck, I will be the 1%" (of people who die from complications of a drug).

Yikes. It made me so thankful that I haven't got there - even if someday I do, thank God it's not the way I'm starting this journey!

Anyway, Theresa and I talked about my 'cute' surgeons and she even tracked down a chart with pictures so that I could point out the one I met on my first ER visit. Talking and laughing with her made me feel like I was reunited with a high school friend. She recommended a book "Crazy Sexy Cancer Tips" and just left me feeling warm and fuzzy and once again - amazed at the kindness of total strangers. I'm about fed up with co-pays I have to say - but today's was totally worth it.

About the surgery...
I thought I would be getting a local anesthesia on Thursday, but found out it's the real deal. General anesthesia will be administered to complete this surgery, so I will be out for the count. I think I'm feeling pretty good about that. I check in at 7am, surgery is scheduled for 8am and should last no more than an hour. Recovery about two hours and I should be home in the afternoon. All this to install a central line so that they don't have to poke my veins each time I go in for chemo. Praise God!

Noticing the "good stuff" -
[x] West Denver Prep
[x] nice people (who make me laugh is a perk)
[x] Tiggers for their bounce, and Eeyore's for making us thankful for Tiggers
[x] Anesthesia
[x] Blogspot! (haha! insert evil laugh here)
[x] Ms. Dai

Chemo Class...

So, I just got back from "chemo class"...

Mondo and Sheila met up with me and my mom and we grabbed a quick cup of coffee before we headed up to class. The nurse who held the class gave an introduction naming off my Oncology Team - including my doctor, nurses, pharmacist, dietitian and social worker. Then we watched a video. And then went over some information about chemotherapy in general. It seemed all very basic.

They gave us a list of symptoms to be aware of and I didn't leave before picking up a thermometer (even though I kept calling it a thermostat). I came away knowing that I have a team available to call 24/7 if I need to.

I also filled out the forms to participate in the Clinical Trial and should know within the next couple of days whether I will be in the Control Group or the Study Group. I saw a woman who was on her 10th week of receiving the same chemotherapy drugs that I would receive if I was selected to be in the Study Group. She looked pretty good to me considering the research I've done has been a little scary. Hasn't lost her hair and although her face had darker spots, she didn't have a horrible reaction.

Anh, it wasn't very exciting. But I will speak to my own nurse, about my own chemo drugs and side effects when I go in on April 30th for my first treatment.

Noticing the "good stuff" -
[x] being able to joke about it...
[x] lunch at Pete's Gyro Place...
[x] Colorado Mammoth!
[x] my new digital camera...
[x] good eyelash days (similar to good hair days, but when your eyelashes curl right and mascara goes on perfect :o)
[x] friends and family... always.

Just made me realize how much I missed them...

Tonight I went to my friend Erica's wedding. She married another friend of mine, Ryan.

Ryan was one of the first people I remember meeting at Sun. I remember, because when my brother introduced me to him he just started talking to me - and fast. All I could do was watch him and wonder, how do you do that? But I don't remember if I understood anything of what he was saying. If you ever met Ryan, then you know exactly what I mean... but if not, his normal conversation speed is as fast as an announcer reading off legal terms in a commercial.

I think I might have been one of the first people that Erica met when she started working at Sun. I don't think I made a good first impression on her, because at one time she said that she thought I was mean when she first met me and maybe she wasn't so excited that she had to sit two cubes away from me. But we became friends fast and I remember that I got extra visits from Ryan who just happened have to pass her cube to come over and talk to me.

I didn't realize how much I missed those days.... When Jason talked me into joining his softball team - just cause he needed more names on the roster he promised. So I talked Erica into it - but she ended up really playing. Then there were BBQ's, happy hours, movies, parties - just hanging out a lot. I had a chance to meet Erica's mom and dad and her best friends (A-,R-,D-) who were always really fun to hang out with too and Ryan's daughter Savannah, who is about Darren's age.

I moved to a different department in Sun and don't spend as much time with them like I used to. But I got to see most of them tonight, and it was fun catching up. Just made me realize how much I missed them.

Good Medicine...

The Colorado Mammoth had their final regular season home game tonight at the Pepsi Center. They kicked butt! This victory ensures that the team will host a West Division Semifinal playoff game, likely to be played on Saturday, May 3!

It was such a high energy game! Really, they all are, but this one was extra. So fun. Is it so bad that one of the highlights was seeing the fight between Tom Ethington (way hotttt) and Chris McElroy. Man, Tom E is a scrapper! I don't know what happened, just looked over and saw gloves all over the floor along side a couple of helmets and sticks. Tom E and McElroy doing a little dance and then pow! It was all over for McElroy. Ouch! Ooh. Ouch! Ouch! Yikes! That had to hurt.

Argh! I can't believe I forgot my cowbell! However, I did wear the lucky ring that Voodoo entrusted to me and I kissed it every goal! BTW - Happy Birthday Voodoo!

Anyway, adrenaline levels way up, way happy, feeling good. That is good medicine! The Best!

Just a note... we're probably gonna get a projector to watch the next two games at my house if anyone is interested. Sunday 04/20 and Friday 04/25! Let me or Mondo know if you can make it.

Freaked Out

Okay, so I think my attitude towards this whole cancer business has been pretty good. Optimistic. Hopeful. Determined. And not because I am trying to put on a front for anyone, but because that is how I truly feel. Even through my first meeting with my Oncologist, Dr Azar on Wednesday. I re-listened to the short portion that we did record and was amazed at how calm and collected I sounded. And there was even a point in the meeting when my sister got a bit freaked out and I put my hand on her arm, patted her and told her "Don't worry, I'm gonna be okay."

But last night I was working on my journal and I was researching the Clinical Trial drug Cetuximab and I'm going to admit - it freaked me out a bit. As I mentioned, they really repeated that one of the side effects would be the rash on my face. I went ahead and took a look at some photos of people with this reaction - and wholly cow! It scared me. So I've been trying to tell myself that I really need to weigh the side effect with the possible gain - acne like rash/non-recurring cancer. hmmm... I know, not a tough choice huh? And I can say that right now, but realistically - three months from now, I might be tired. I might not feel well. And will looking at myself in the mirror be the straw that breaks the camel's back? I hope not.

Heck, I don't even know if I will be chosen as one of the participants that take the Cetuximab, so I know I just need to chill out - and I will. Point is, some things about this do freak me out...

And the not-so-technical part...

Feelings...
I know yesterday's blog update was pretty technical. Scheduled. Informative. I guess I forgot to put some feeling into it, so I thought I would add it today - cause man, I got a lot of feeling...

Tuesday night and Wednesday morning, I found myself staring up at the paint in the ceiling and thinking, or wondering - I don't know about what. I guess I was trying to figure out how I felt. Scared, nervous, sad? And none of those emotions stood out. I was excited. I wanted to go to my appointment and find out what the next step was going to be. I mean, I'm going to beat this, so we might as well get started right?

At the doctor's office...
When my name was called, the six of us stood up and headed back. We met up with Dr Azar in the hallway and she said "whoa, who's the patient?" So I told her I was and she asked if everyone was coming back and suggested maybe they wait a bit longer in the waiting room, while I had my exam and she got my history, 'cause she was going to ask me about my whole life... Mondo couldn't get back to the waiting room fast enough!

But it wasn't all that. A really quick exam and a few questions. When everyone came back in, she started out really technical - naming off medication combinations and I was like what? But she was funny, and let me take in what she was saying, circling back when my eyes got that dazed look, to repeat and clarify. She was patient when I asked a question and even when someone else in the room asked the same question again. And she didn't make me feel rushed at all. I couldn't say that she did considering it was over three hours. I feel good about her and so did my family - and Sheila, but I guess you're part of the family whether you like it or not :o)

Mondo...
So now I am going to head off on a tangent and write about Mondo... you know, me and my Mondo. My niece Phia loves Mondo. One time I hugged him and looked at her and told her "this is my Mondo" and she (2 years old) goes "Myyyyyy Mondo!" and Karen (her mom) goes, "Phia, one day you will learn, that's Tia Tommy's Mondo".

We stopped off for lunch before we headed out to the appointment and he wasn't talking much. I know he didn't feel well 'cause he has a sty in his eye - I should write music - and he has not been getting much sleep. He has been so sleep deprived, he even slept in that day and missed work! Yikes!

Anyway, I thought of my bible study the night before and the subject of The Five Love Languages. Words. Gifts. Service. Quality Time. Physical Touch. And part of our discussion was, How do you feel loved? Do people love in one language? Some might, but I can't determine one when I think of my brother (or any of my family).

I think of everything he has done for me - pretty much always, but especially since I've been sick. You know his back went out right before I went into the hospital and then he was barely feeling better, but he was ALWAYS there for me. And I am not knocking anyone else, because so many people have been here for me and I love you all for it. But, he was the first person I called when I found out I had cancer, he was the only one I wanted there with me until I could catch my breath about it. 'Cause he's not just my brother, he is my friend.

Mondo's "words" of love often come in the form of sarcasm. He cracks me up! And I love that. But I remember one time he sent me a text that said "Thinking about and love you sis", which wasn't funny at all, but still awesome. Gifts? I don't know if you know this about Mondo, but he doesn't buy gifts for set occasions, like birthdays or whatever. He prefers to give gifts with meaning. Like if he knows you like fish and you always wear slippers and you're always cold - he will actually look for a pair of fuzzy warm slippers with fish on them. And even better if there is no reason in the world to give them to you other than he thinks you might like them. One time I was home and I was sick, but I'm not sure he new that. He comes in and has a potted tulip plant. I love tulips! I knew he had just visited with our friend Lindy and I asked him "Oh, did Lindy send those?" He goes "No! I did!" and I said "Oh, Tulips are my favorite!" And he goes "I know!" - like how could I not know that he knew that. It was no accident that he just stopped by to bring me my favorite flowers.

Physical? One word. Hugs. I think we all need them. Thank God I never have had a shortage of them. Mondo spoke at my nieces funeral and I remember him talking about "hugs" and how he learned a lesson in "hugs" from my nieces. That no matter how tiny you were, and how big of a person you were hugging, give them with all your might. I'm going to look for the wording of what he said 'cause it's worth noting. So maybe if you got this far, you will check back. [insert] But even if you don't, if you've ever had a hug from Mondo - and if you have ever met Mondo, you surely have - you know what I mean.

Service & Quality Time? Mondo babysat me this past week when my mom and dad had to go out of town. He turned his schedule upside down to drive me anywhere I needed, or wanted to go. And just kept me good company in general. Then when my parents got home and he found out I drove myself somewhere, he told my dad that he better take care of me. He said "Tommy likes to go to bed about midnight, so make sure that it's warm in here for her. And she needs new water at 4:30am - so don't forget. She can't have stale water." HAHAHAHA! That was hillarious! But the truth is, if I wanted water at 4:30am - I bet he would bring it to me.

Give it to me straight Doc...

Okay, Okay, Okay. Here's the big update. I wasn't trying to hold out on info - the doctor's appointment that started at 1:30pm lasted until 4:00pm! Yikes!

That being said, there was a lot of information. I had even bought a digital voice recorder so that I could re-listen to the conversation. Unfortunately, I didn't press the record button. That was truly disappointing. But Sheila was there and she took notes and we went out for ice cream afterwards to come up with a brief breakdown.

Here we go....

First decision - To chemo or not to chemo? No brainer right? I am going to have chemotherapy treatment. We ended the visit with the numbers, but I am going to note them here at the beginning because this is where I think they fit in.

My Final Pathologic Diagnosis reported at least AJCC Tumor Stage Grouping IIIB.
With this staging, percentages are

- without treatment, 64% cured within 5 years.
- with treatment, 85% cured within 5 years.

So one big answer is, my cancer is curable! yay! Point issued! However, there is a chance of new cancer, so I will continue to have checkups FOR-EV-ER to check for polyps. yay! ok, not really "yay", but you know...

Second decision - Participate in a Clinical Trial or not? If I had to choose right now, the answer would be yeah. But I have until Monday to decide, so.... nope, chances are still that I will say yeah. The deal is, if I decide to participate in the study, I would then be placed in a random drawing to decide which side of the study I would be on. One side would be treated 'standard' with the standard recommended chemo. Second side would be treated with the standard chemo plus another drug called Cetuximab. It's a 50/50 chance that I will end up on either side.

FYI -
Title of Clinical Trial: A Randomized Phase III Trial of Oxaliplatin (OXAL) Plus 5-Fluorouracil (5-FU) / Leucovorin (LV) With or Without Cetuximab (C225) After Curative Resection for Patients With Stage III Colon Cancer (N0147).
Shorthand: FOLFOX with C225 or FOLFOX without C225. much easier...
Note: "FOLFOX" is the short term for a standard treatment (with a combination of the 3 drugs oxaliplatin, leucovorin, and 5-fluorouracil).

Pros:

- Medication has already been FDA approved for treatment of recurring instances of colon cancer.
- It is not an experimental drug.
- Dr Azar seems to recommend it.

Cons:

- Side effects, especially a rash on face, chest and back. They were extremely clear that it would be almost a guarantee that I would experience some sort of reaction like this. So be prepared, I may be a pizza face for the rest of the year. Please be kind.
- Instead of getting treatment once every two weeks for six months, I would get treatment once a week for six months plus an extra week.
- Double copays. Does it really matter at this point?

What else about chemotherapy?

• I will be going back to the Franklin Offices on Monday to take a chemo class.
  
• Treatments will occur for 6 months starting May 1st.
• First week will be 4-6 hours, second week will be 2 hours and then weeks continue alternating. Second week will only be if I am chosen to be on that part of the clinical trial.
  
• The surgery department will contact me within the next week to schedule a visit to have a "port" attached right under my collar bone. This will be a permanent fixture for the entire time I am receiving chemotherapy and will enable me to have my IV's hooked up to it on my visits. The doctor told me that I shouldn't experience any of the pain I did with my IV's in the hospital.
  
• This port will also connect to a pump that I will be able to wear around (not sure how often) to receive part of my treatments. I am told the pump is about the size of a banana. Hmmm- a little lunch-box sized banana? A Chiquita sized banana? Or a big 'ol plantain sized banana?? Reminds me of when the doctor said the tumor was about the size of a bar of soap, yeah - a hotel bar of soap.
  
• It is unlikely that I will lose my hair, although it will thin out.
• It is likely to induce menopause.
• Symptoms are likely to get worse as treatment continues, but they should go away once I complete it.
• May be extremely tired
• Will have painful reactions to cold (food, drinks, weather - anything cold). Ugh...this sux to me!
• And many other side effects that I didn't write down... :o) ooops. I'll get more info in my chemo class. I plan to turn the recorder on this time!

Okay friends. I know this is a lot of information, but really - it's the condensed version. I am looking forward to seeing Sheila's notes on the meeting and to taking the chemo class.

How do I feel now?
I have to admit, I was blown away by the 6 month time-frame. I don't know why I was thinking somewhere more around the line of 6 weeks. But all in all, I am still really optimistic. And thank you so much for your continued support. I know it has everything to do with it.

Also - special thanks to my mom and dad, my sister Ruth, Mondo & Sheila W for sticking through the whole appointment! Love ya.

Update on my dad (and mom)

My mom & dad left for California on Wednesday morning. They got a chance to see my uncle Sonny and spend some time with him, although he was non-responsive through the visits. He had been given pain medication which placed him in a drug induced coma. He passed away in the early hours of Saturday morning. They spent time with family and returned home this evening.

But my dad especially wanted me to thank you all for your thoughts and prayers.

In my head...

This song has been in my head all day (well, since we left church this morning)...

I sing a simple song of love
To my Savior, to my Jesus.
I'm grateful for the things You've done,
My loving Savior, my precious Jesus.

My heart is glad that You've called me Your own.
There's no place I'd rather be than

In Your arms of love,
In Your arms of love.
Holding me still, holding me near,
In Your arms of love.

by Kutless

It just really says exactly how I feel.

His sense of humor!

Today, Mondo and I met up with my friend Matthew for lunch. I had borrowed his camera to download pictures from the Mammoth Game on Thursday and wanted to return it (Thanks Matthew!). We met at Noodles & Co near Belmar. Mondo tried my dish and confirmed what I had mentioned early, that it was a little spicy. I said "That's okay. Nothin' that the Cold Stone we're going to go get won't cool off." Matthew just laughed and said that he was afraid he wouldn't be able to join us for fear of the food coma he would have to deal with when returning to work. Lame.

Okay, for the rest of the story to make sense, here is an email that I received last week.

---------- Forwarded message ----------

Tommy,

I am so sorry that I have not been by to see you yet. I would like to come by when you are up to it. So happy for you though, about Gavin Prout..wow!, Lucky girl. Im so jealous. It was wonderful reading your letter and hearing your great attitude. God has been truly faithful to our prayers. Im so happy that you have such a wonderful support system, with your family and church family. So let me know what days are good for visitors and I will bring over some cold stones :)

Jennifer

I told Mondo and Matthew, "You know, Jen said that she would bring me some Cold Stone last week" and I yelled out "JEN, BRING ME MY COLD STONE!" And we laughed, seeing how close we were and the idea of asking someone to deliver it to us....

So we say goodbye to Matthew - and Mondo & I drive three storefronts down to Cold Stone, and as we were parking I see Matthew walking....
Me: There's Matthew... Where did he park?!
Me: Who's he with?
Me: Hahaha. That's Jen!

She walked up and opened my door, gave me a big ol' hug then she said, "I just ran into Matthew and he told me you were coming over here. That's so funny, I owe you Cold Stone! How are you? It's so good to see you....."

What? You had me at Cold Stone...

I wouldn't necessarily call my yelling out "JEN, BRING ME MY COLD STONE!" a prayer. And I wouldn't necessarily say that Jen showing up and buying me (and Mondo) our Cold Stones was an answer to my prayers. But I would say that the laughter I got out of the whole incident was. Laughter, it's a fact to me - is some of the best medicine! And the whole incident made me laugh!

Oh yeah....

Oh yeah, staples were removed yesterday and all seemed fine. I got a pathology report on my tumor too - but it doesn't really make any sense to me. That's okay, looking forward to discussing with my Oncologist, Dr Azar.

BTW - The dimensions of it were 5 x 3.5 x 2.3 cm.

Prayer Request for my dad....

My dad got news this past weekend that his brother Sonny, who lives in California is quite ill. He has cancer that has spread through his body and the doctors have said that there is nothing else they can do for him. They've given him only hope of a few more weeks. My mom and dad have decided that they will drive to Riverside on Wednesday to try to go spend a bit of time with him.

This past week has been very hard on both my mom and dad. But they have found much comfort in all of the support and prayers that you have given me and my family. It has made the world of difference to see my dad be able to laugh with me this past week, when I know if he had not had you there for him, he might have been lost in sadness.

An extra prayer for a safe journey that will offer comfort and peace to my dad and my uncle would be so very appreciated.

Out and about...

The ending of a great week... I got out of the house starting with the Mammoth game on Thursday (details in previous post).

Then Friday night I attended a Mission Estonia Poker Party Fundraiser at Marvin and Donna's House. It was a lot of fun and really good to see some of my Faith Mountain family. Although most of them had visited me in the hospital, it still felt like a long time since I had seen them. Donna made sure I had pillows for comfort and Mary (who I had met at a previous poker party) tended to my needs the rest of the night. She wouldn't even let me get up to get a bottle of water. But I didn't sit still the whole time. I mingled during the break and chatted with friends after I went out.

Saturday we had a birthday party for Darren at Faith Mountain. It was pretty easy - Mario and Karen ordered pizza's and brought salad, drinks and picked up the cake that Denise had bought. Everyone who got there early helped put out the chairs and Mondo and John set up two projectors for the kids to play Xbox and Nintendo. I think they had fun because I didn't hear any "I'm bored" complaints. The adults sat in another room and chatted, and eventually played one game of Texas Hold'em. By the time that game was over, I was starting to get a little achy and was ready to go home. Everyone pitched in and cleaned up in no time. I gave my mom the "night off" and she and my dad took a trip up to Blackhawk. Mondo came home with me and Darren and "babysat" me until after 1:00am.

Today, I made it to church and got to see the rest of my Faith Mountain family that I had been missing. I was so happy during worship, I sang my heart out.... and I don't know if many of you know this - but I don't sing, except at church, and usually I don't sing very loud there. But I was just so thankful for such an amazing week, I couldn't help myself. Sorry to those of you who were sitting near me ;o) This evening, we went to Mario & Karen's house for a family birthday dinner. Darren had his favorite, king crab legs - so I think he was pretty happy with his birthday weekend. Score!

So the weekend update is this - Every day I am feeling better and seem to be healing well.

I'm sure I'm repeating this when I say it, but you would have thought that this past week would have been the (2nd) worst in my life, but it wasn't. It actually felt like one of the best. I feel truly blessed.

Tears of joy. Way better than tears of sadness.

The Tarpit visits me in Section 102!

Me, Meghan & Mondo

Matthew & Me!

I just got home from the best game ever! Well, actually - I missed alot of the game since I couldn't sit forward in my seat and jump up whenever I wanted to. And usually, I want to stand through the whole game. But, I made it to the game and I was able to sit through the whole thing, so that was awesome!

Just Happy!

During halftime, Voodoo and the rest of the Tarpit all came over to our seats to say 'hi' and to take a picture with me. I knew that Voodoo was going to try to stop by, but it was a nice surprise to meet everyone else. The aisle guide or guard or whatever their title is actually wasn't going to let them down to our seats. They ended up going over to the next section and crossing back! What determination :o) So I was just so excited and all I wanted to do was give Voodoo a great big hug to thank him in person for doing whatever he did to get me an email from Gavin. And just for his kind words too. And then he tells me that he wants to give me something and takes a ring off his finger. Before I could finish saying "No, you really don't need to do anything like that..." He says, "Yes, I want to. This is my lucky ring and I have worn it to every game for the last three years." "Oh no, I can't take that..." "How about this, this is my lucky ring and I want you to have it... and you can give it back to me when you're all better." Ah, tears in my eyes again. And another hug.

Voodoo - you don't know how your kindness has touched my heart. I bet that I have spent less than 15 minutes, maybe 10 - crying over my cancer diagnosis, and half of that was worrying about how my family would deal with it... But I have been brought to tears several times by the overwhelming goodness of people like you. Here you are, a stranger - and then a group of strangers - making such a sweet and meaningful gesture. Tears of joy are way better than tears of sadness.

Wait! The story doesn't end here. Mondo asked if I wanted to go on the floor to see if Gavin was there. Dad was going to pull the van up and so we did. We waited for a while and finally Gavin came out and of course, everyone was yelling and cheering. Maybe we shouldn't have stood in the middle. He's never going to get here. Everyone is going to go to him. Bummer. Nenad Gajic had just come by and a security person told him time was up. I thought, well, probably the same for Gavin. But we still waited and I wanted to see if I could see him at least, but I was in the wheelchair and my view was blocked. Looked like they were telling him it was time to go too, and that's when I saw him look over and smile at me and walk straight over! He signaled to me that he was coming over to see me. I got the biggest cheesiest smile on my face and stood up.

He gave me a big hug and asked me how I was doing. I told him good, but at that moment - great! I thanked him for his emails and asked if he would take a picture with me, to which he answered "of course". Argh! When will I learn to take my camera! Matthew left early so I just had my camera phone and ugh, my eyes are closed! I am so happy about the moment I am still going to post the photograph. He thanked me for coming and wished me well, telling me to take care and hoping I was better soon. Oh, what a great night!

On the way out to the van, my whole family knew how happy I was. Mom was asking what happened during halftime and I was showing her the ring and sharing the story. I asked Mondo what he did and he said he went over and was able to talk to Gavin, saying "I know you're busy and you have lots of people to see here, but my sister would really like to thank you for some emails you sent her this week." It sounded like he knew who he was talking about by that and said he would come over. Thank you Mondo!!!

So, my tummy hurt and my sides hurt too by the end of the game. That was the first time I've really done steps and been out since the surgery (besides the quick trip to Target yesterday) - and that was a lot of steps. But it was totally worth it! I'm already feeling better.

And oh yeah, the Mammoth won too! Nash kicked bootie. That means playoffs! Yeah!

Mondo is the best! Eric too :o)

I love Mondo.

Yesterday he called me and asked me what I wanted to do about the game.

Mondo: Do you still want to go?
Tommy: Yeah. I don't know, I was thinking maybe I'd go at half-time, just in case I can only sit like that for a short time. I'd rather see the second half than have to leave early.
Mondo: Well, I talked to Eric and he wanted to know if you were okay for it. He said, maybe if you didn't feel up to it, we could do something with our tickets and all go over to mom's and watch the game with you.
Me: What?! My friends are the best! No way! He said he'd do that? Wow.
Mondo: Whatever you want sis.
Me: I don't know, I just don't know how I will do, but I wouldn't want to make you all miss the game. Although, that is a sweet gesture.
Mondo: I'm up for anything. It's just one game. How about a wheelchair? Do you think it would be better if you had a wheelchair? I can see about exchanging our tickets.

The conversation went on and he came over for dinner. He ended up taking my parents' and Darren's tickets and upgrading them for lower level wheelchair accessible seats. This way, if I can't sit in the regular seats, I can sit in the other. And he's willing to move to the other's with me - even though they are not nearly as sweet as ours. All I need to do now is find a wheelchair, but I actually think we might have one in the basement or garage. I'm so psyched.

I love Mondo.

And another appointment...

Dr Azar's office called and said that they have sent an order for Labs and Chest X-Rays. Friday, April 11th. I will complete these at the Lakewood KP as a "walk in" and my follow-up visits will be with her at the Franklin Clinic.

Oncology Appt Set

Have an appointment to meet my oncologist, Dr Azar.

Scheduled for Wednesday, April 16th. I was told the appointment would last an hour.

Here we go!

Gavin's Email - 2nd one!

Allright, yesterday was good, but today was awesome!

First, I got another email from Gavin! [See first one here] He replied to my original response. That was a way cool way to start my day.

----------------- Original Message -----------------
From: Gavin
Date: Apr 1, 2008 5:20 AM

Yes I really am Gavin, I know it's hard to believe especially on April Fools Day but your brother wrote to Steve Govett (our GM) and Steve contacted me. I chose to write you since you were such a big fan or both the Mammoth and myself.
I truly am sorry to hear about your diagnosis, but from what I have heard about you and your positive attitude you will be fine after your treatment, you are a very strong individual.
Don't rush yourself or spread yourself too thin, you have to concentrate on yourself and your therapy, not the Mammoth. We will be around for a couple more games and many more years so you will get your fair share of games to watch in the future.
Thank you for the belated birthday wish, all the best!

Gavin Prout
9

----------------- Original Message -----------------
From: Tommy
Date: 31/03/2008

Are you really Gavin??????

Because that is crazy and I wouldn't put it past my brother and my friends to set up a whole MySpace account to send me a note from you! Everyone knows I'm a huge fan of yours.

I had the surgery last week and was released from the hospital yesterday. But I found out that I have cancer and will need some followup.... so my brother told me, "milk it" and I said, well then can't I get a make-a-wish.... please bring Gavin in to see me okay? And he laughed and brought in a Mammoth bandanna (see pic below) and flag to dress up my room. That was cool.

Anyway, I absolutely love the Mammoth and even moved my surgery to try to avoid missing a game. So hopefully I will be able to make it on Thursday. That is my plan at least.

Thanks for writing, whether you are Gavin or not, that made me smile. And if you are, happy belated birthday!

Take care,
Tommy

So I sent an email to "Voodoo". He's the guy that Mondo originally had contacted and explained what was going on and asked if he could do anything. He responded saying he didn't do much. Just contacted Steve Govett (the GM of the Colorado Mammoth) and that Steve and the team did the rest. A few pieces of correspondence later, he sent me the following:

Hi Tommy,

Are you still in the hospital? If so, where? Govett and some of the team would like to visit you if possible.

What?! That would have been so cool. And for a second I thought, I can sprain my ankle or something.... Well, I'm not in the hospital, but the offer alone just lifted me higher than a kite. I can't tell you how much it lifted my spirits. I sent texts to all my friends who know what a Mammoth freak I am. They were way excited for me too. And a few of them even offered to come and help me break my leg.

Me and Mike Norris. I'm sporting the Mammoth Bandanna Mondo had brought me.