Ohhhhhh.... You mean, how am I dooooooing.

It's kind of funny, I started a new job last week and have come across a lot of people asking me "How are you doing?" I answer - you know, the way you answer that question. "I'm doing great. How have you been?" To which they respond, "So everything is going okay?"

Ohhhhhh.... You mean, how am I dooooooing.

I guess I'm doing so well I forget that you might be referring to my C-stats. Or maybe it's just cause it's not a question I get everyday anymore. My peeps (the people I hang out with) know that I am doing good. Have had good check-ups. Still in remission. No more side effects. All that jazz. So, I don't mean to sound like an idiot. I didn't forget that I have cancer. I just am not thinking about it all the time :)

Annnnnnyway - there was a reason I was posting on this blog. Two things.

1. New job. New insurance. New doctor. Had to move away from Kaiser. Bummer. I was really really bumbed to find out that my insurance cut off at midnight on my last day at Sun. Grrr... I thought it would go through the end of the month (only 'cause that's the way it was at RTD). If I had known different, I probably would not have worked the first two weeks of July! Grrr... Good thing is that Dr Azar made a referal for me and the 1st choice doctor is accepting new patients. I'm all set to meet him on July 30th. Or 31st. I can't remember. But anyway, that is cancer-related and therefore, Umm,-that-wasn't-the-diagnosis-you-originally-gave-me blog worthy.
2. Chemo hair. Grrr... I didn't lose all of my hair and most people couldn't even tell that I lost much at all while I was going through chemotherapy. But I did lose alot of hair and I think it's growing back and doing it's own thing! I am hoping that the issue is just the new growth is at an awkward length and it's just a little (lot) unmanageable. I am hoping that once it all grows out and evens up it will be better. I am hoping that these spastic cowlicks aren't forever. I spend a good hour trying to blow dry it straight and then get frustrated and put it into a ponytail. In an effort to save me the hour (and a lot of frustration) - I've been skipping the blow dry and opting just to go straight for the ponytail - appearing to be really, just lazy. I know. I shouldn't complain. This isn't complaint-worthy at all. But, I think it's cancer-related also - so it was something to write about. It does make me greatful that I don't have anything really worth complaining about though.
   

What can I do?

Last week I found out a friend of mine was diagnosed with cancer.

She's a co-worker of mine, but we're in totally different departments now, so I don't see her much. We occasionally jot notes to each other on Facebook. I do consider her a friend though in the fact that I enjoy spending time with her when I do, wish it was more often and would keep in touch with her even if we didn't work at the same company. My point is, we're not close close friends, but I do care about her and this news has been on my heart since I found out.

She was not the one who gave me her news. It was another co-worker.

I want so much to offer support to her, but I do not want to intrude uninvited on such a personal and undoubtedly devastating time in her life. I have always tried to NOT be the kind of person who says "I know how you feel..." but at the same time, I feel like I can at least maybe relate to some of what she is going through. The unknowing part. The where do I start - how do I start - to deal with this part. I think about how I wanted to find people who knew what I was going through and what I was going to go through to "interview". You know, like I remember really wanting to know what the "banana phone" looked like. I guess I just want to offer that up to her, if she is looking for that too.

The thing is, I know that my experience was mine. In so many ways I just don't really understand why mine was so different than what I have heard other's have been. It has been probably the biggest cause for the question "why". Not "why me?". Just "why" was mine so different. I don't understand. And I don't know if anything I would have to say would offer help or comfort to her.

I do know this. I believe it was more than my youth, my attitude, my support of family and friends, my faith, my humor...

As I have said - before I was diagnosed, I always thought being told you had cancer was the same as being told - your life is gonna suck from now until you die - and you're probably gonna die soon. My only experiences with cancer were all that. Pain, diagnosis, agony through treatment, loss of quality of life, and then - death. There was never any recovery. And on the one rare occasion I can remember that there was not - I was always waiting. It was not a morbid fascination or anything like that. It was just how I believed it would be. It was my life experience with cancer to that time. I was always asking, how is uncle Jerry? It never entered my mind that he could be "better". Living life. In my mind, he was always in a fragile state of being, at risk of being broken at any moment.

So, where am I going with this? Well, it's about stories. Real stories that made surviving and living REAL. I do attribute my own experience being a "good" one (comparatively speaking) to all of the above, but also to some dear friends who chose to share their stories with me when they learned of mine. Matthew. Heather. Sammy. Tracey. Nadine. Heller. I was in wonder with most of you when you told me your survivor tales. It wasn't just a matter of having hope (which, don't get me wrong, I have always had hope) but you made surviving be real in a way that numbers coming out of my doctor's mouth could not. You erased the myth that had occupied my mind ever since the word cancer had entered it. I see it in a whole different way now.

Hearing my friend's news broke my heart. But I feel like at the very least, I can offer her an "aura" of hope and positive energy and honest belief that she can add her story to the list of survivor stories I have.

Oh gosh. This is turning into rambling (but I think that's what this blog was created for :) What I wanted to end with was some unsolicited advise, knowing that these things will not work for everyone. Maybe they won't work for anyone else, but they are things that I found helpful in my own experience - and if they can help anyone else, well then, that would be pretty awesome too...

• I was open with my diagnosis with friends and family - well, and pretty much anyone who cares to know. I tried to lean on them when they offered - and appreciated their company at each of my chemo appointments!
• I blogged. I recently had my one year anniversary and I was happy to have a record of this time in my life. It makes me appreciate where I am now quite a lot.
• I tried to "get ready", at least once a week. I found that if I felt like I looked as sick as I felt, then I felt worse! But if I got ready, I would actually feel better. This may be a given for lots of people - but when you have the opportunity to sleep til noon and hang out in jammies all day, sometimes you do! Lazy is as lazy does?
• I looked for positive stories and resources and focused on those.
• I tuned out the negative.
• I listened to my body and rested when I needed to - but I also did "fun stuff" when I was up to it (and I did a lot of fun stuff!).
• I laughed.
  

BTW, I sent an email to my friend letting her know that I heard of her news, how sorry I am, and that I am here if she needs anything. I know that she is surrounded by her family and close friends and lots of love.

You are in my thoughts and prayers J! - xox

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...

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.

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.

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.

The C-Word

Starting Wednesday, I spent most of my time in the visitor's waiting room. We kind of took it over the whole time we were there because I didn't want to disturb any of my roommates and there wasn't a lot of space for visitors in my room anyway. Also, the doctor's wanted me to be sure to get up and walk around, so it was easier for me to do this from the waiting room. Plus, there was a great view from there. Too bad, I didn't take a photo.

Anyway, when I finally got to my room on Wednesday evening, I found I had a new roommate. Vanessa came in with a complication after a surgery she had a couple weeks before. Her mom Linda was with her. They talked to me a bit through the curtain. Asked how I was doing and all. Linda ended up staying the night, sleeping in a chair next to her daughter's bed.

So, Thursday was the day. I thought I had pretty much prepared myself to hear the results, but I don't know...

I was anxious about it. Woke up at 4am - I wonder what time Dr Vaughn will be here. Another doctor came in to check on me early in the morning, maybe about 6am. He said that they should have my results today, but didn't have any other information.

Dr Vaughn came into my room at about 7am. I had fallen back to sleep and the room was dark. I opened my eyes as Dr Vaughn leaned over my bed and asked me how I was doing. Again, this is how I remember the conversation, which might be completely out of whack.
Dr V: Well, we got the pathology report and there is cancer.
Me: okay.
Dr V: There were 20 lymph nodes and one of them was cancerous.
Me: okay.
Dr V: What that means is I will give you a referral to an Oncologist and they will likely administer chemotherapy. It looks like we got the tumor out completely and I didn't see any other masses. But there is a lot of inflammation and you will need to follow-up to make sure it doesn't spread. You will also want to let your brothers and sisters know that they should go in for a colonoscopy as they may be at risk.
Me: What does that entail, chemotherapy? Will that be during my recovery, after? More time off? Am I going to lose my hair?
Dr V: There are so many types of chemotherapy. You'll need to discuss with your Oncologist the what's and when's. You'll need to do some healing with this surgery before you can start that.
Me: okay.

He walks out and I sit there, with just a dim light above my own bed. Not sure what I am supposed to be thinking. Not sure how I am supposed to be feeling. I have cancer. I don't feel like I have cancer. But I'm pretty sure he just said I have cancer.

Kim, my awesome nurse walks in and asks me how I'm doing. "I got my results back." "And, what were they?" "The tumor was cancerous." And I start to cry. "I don't know what I'm supposed to do or say." She comes over and hugs me and says, "It's okay. Do you want me to call your mom? You should have someone here." "No, I don't want anyone here yet. I'll call my brother." And then Linda comes over and gives me a big hug too. People can be so nice. They don't even know you, and they can care about you right at the time that you need it most.


I call Mondo and tell him I got the results. He asks if I want him to come over. "Um, I don't know. I want someone to tell mom. I want her to hear before she gets here." I can't imagine what her reaction will be. How would I feel if someone told me my child had cancer? No matter how I feel about it, I can't expect that her feelings will be the same. I call Karen and Mario too. And give Karen a list of people to call and give the news to. Mondo will call the others when he gets here. I just want to make sure that people who might stop by to visit, know before they get here.

The rest of my stay is completely uphill. More visitors, more cards, more calls, more emails, more prayers - and yeah, more flowers. I am completely immersed in love. I am not stressed or angry or bitter. I don't think life is unfair. I just am. I am happy to have all of these people to keep me company at this time. I spend alot of time laughing - and it hurts to laugh, but at the same time - it feels so good to be able to laugh.