Monday, March 25, 2013

Happy Anniversary To Me!

It's funny how a certain day out of the year can have special meaning to you, but just be another Monday... or Tuesday... or whatever, to anyone else.

There are a handful of dates that I often find myself measuring time by. They are anniversaries of events in my life that were impactful enough, that nothing could ever be the same after them. Some happy.  Some sad. Some tragic. 

March 25th, 2008 marks one of those dates for me.  Five years ago today I had surgery that removed colon cancer from my body. I don't think of it as a sad day... I wouldn't say I  consider it a happy day either (although I should, since it saved my life). It will be a day that I will never forget. 

Once upon a time, I wrote these words;


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.

It's funny how I said I was looking forward to the day when everyone thinks I'm my old self.  And here were are. And here they do. I guess there is a part of me that wants this day to be as special to someone else as it is to me, but really, it's just another day.  So that's okay too, because I wouldn't want it to be one of those sad or tragic markers in anyone else's timeline.

For the record, nothing will ever be the same. But this I know, is good. I am stronger for the experience. 

And for five years, I have been looking forward to to celebrating today. So I think I will....



Saturday, January 14, 2012

A different kind of grief...

Holy cow! I can't believe it's been over a year since I've blogged. Here at least...

I'm still around, in case you were wondering. I've received some comments and emails asking if I was and thought it was awful nice of you to care enough to ask, so the least I could do is respond.

Early last year, January 1st to be exact, stuff happened. My mom suffered a really bad stroke that left her unable to speak and move very well. On top of that, an x-ray done in the ER revealed a large mass in her lung - Stage IV lung cancer.

My mom was in the hospital for two months, just trying to get her well enough to get to a rehabilitation center. Halfway through, we were hopeful as she had started to walk with the aid of a walker and assisted by medical staff.

Hospitals are funny places. Not funny as in "ha-ha" you made me laugh. Not funny like that at all. Funny in the way that you are in great danger the sicker you are and the longer you stay in one. "Super Bugs", resistant to antibiotics and other treatments, are life threatening to patients with weakened immune systems. My mom was one of these patients. While in the hospital she contracted at least two separate cases of pneumonia. The stroke had severely impacted her ability to speak... and also to swallow. When you added in the obstruction from the tumor in her lungs, it was a bleak scenario. She just couldn't cough out the bad stuff and never recovered.

Cancer. Hit me harder than it ever had before. I lost my mom on February 26th, 2011 - just two days before what would have been her 41st anniversary with my dad.

For anyone who knows me, you know I stayed very positive through my diagnosis, my treatment and through my check-ups and remission. Sure, I get anxious for test results and maybe I am more nervous than I was before - but I'm not sad, angry or physically down about my own bout with cancer. For those of you who don't know me, you might have commented that you gather that from reading my blog.

I've had some fucked up things happen in my life. Three of my nieces, ages 7, 8 & 10 were murdered in 1999. I was diagnosed with Stage IIIB Colon Cancer at age 36 in 2008. I lost my house due to Cancer and all the fun parts of dealing with a medical condition like this in 2009. But I always knew that these kind of things didn't just happen to me. Everyone suffers. Everyone has dealt with their own tragedies, or if not, they probably will at some time. And if they don't ever, then Praise God! I'd never wish harm on anyone. My point is, somehow I managed to keep that positive attitude to all of my own... until mom.

It was a whole different kind of grief and eventually loss and more grief. I tried to do everything I could do to be there for her and help make decisions for her care, but in the end, we still lost her. No positive outcome. No more hope. I was angry. I was sad. I was lost.

It's been just over a year since my mom had her stroke. I honestly don't feel as angry and hopeless as I did back then. I'm still grieving and I miss her, but I'm able to look for some positive through it now; The best thing - we got to say goodbye. I don't know why my mom started to get better for the one month before it got so bad, but she did. And even though she couldn't speak to us, she communicated. She told me that she loved me in her own way and I'll always have that as one of the last feelings to have shared with her. And if I allow myself to look, I often find bits and pieces of other good too. Like the way mom always taught us that life goes on. We cannot stop living due to our grief. And how better to honor that lesson than to not only go on living, but live life to the fullest and appreciate that we still have time her with our loved ones.

So where does this all come from? Besides being what my life has been about for the last year? Well, for one - I was blogging, just not here. I found this blog to be so great for documenting not only what I was going through at the time but also a great way of communication for anyone who cared to know what I was going through, that I ended up creating a separate blog for my mom. Although, I haven't posted on that since her funeral last March. For two - It's another instance of how cancer is affecting my life and of how fucked up it can be. And how I said at one point "I reserve the right to breakdown in the future..." I brokedown. Just not exactly how I expected it to come about. Three - if you smoke - QUIT! That shit is nasty and it KILLS! I can't believe my mom hadn't had a chest x-ray sooner. I can't believe I never urged her too. It's too late for her, but if you know someone who smokes, maybe you can at least encourage them to ask their doctor's for one. It could very possibly save their life.

That said... I am fine, healthwise in relation to cancer. I missed my 3 1/2 year check up so had a 3 3/4 year CT scan on November 13th. Results were good. NED. No evidence of disease.

Sorry for being away so long. I guess just 'cause I'm super pissed at cancer, it doesn't mean I need to take it out on my blog...

Monday, November 29, 2010

Good news!

After I got my CT in March - 7 1/2 months ago, I never went in for a follow-up. I guess I figured they would call me if anything was wrong. I told a friend that and they gave me a lecture saying "Not so!".

Okay. Okay! When I scheduled this CT, I asked for March's results just in case there was a surprise in store for me and they gave them to me (they were good btw).

Today, I called in and asked when I would receive my results from last week's scan. She said, "when you have your follow-up."

Really? You can't hold my results hostage - can you? I mean, I paid for the scan... or I will. (And that is pretty much what I told her).

I got a call about an hour later. She said, "Dr. Cohn wanted to let you know that the results of your scan are good, but he still wants you to come in so he can discuss them with you."

Nice. I'll take that.

And I did schedule a follow-up appointment too...

Wednesday, November 24, 2010

Halfway there CT Scan! And Happy Thanksgiving!

So today I went in for my six month (albeit a month and a half late) check up via CT Scan. The flavor of my barrium "smoothie" was banana. Such a lie. It is soooo not a smoothie. It's like drinking liquid chalk. Banana flavored liquid chalk. Yumm. Sorry, I'm getting off on a tangent.

I'm not sure when I'll get the results back, but I am praying they are unremarkable. I'll let you know.

I went to a new clinic today for my scan. The place I go is through RMCC, but they have a mobile "Love Heals" trailer with the equipment for the scans and today it happened to be at a clinic I hadn't been to before. I mainly spoke to two people, my intake nurse and the technician. I've probably said this before, but I just think that the level of care (?) goes up a notch when you're getting specialized treatment. People seem to take more time and more interest in you.

Both of these ladies were so nice and talked to me like we were good friends. One found out that we had a child the same age and she talked to me about her daughter and school, and driving, and texting and..... The other just went right into Thanksgiving and after asking if I was ready for it and how I was spending it, told me all about her plans. Her husband is baking a turkey for her side of the family dinner which they are having at her parents house (although her parents are out of town). He's smoking a turkey for his side of the family dinner, which he will be able to attend because he has to work in the day. What? I'm not complaining. I love nice people. It just seemed a little weird and then I told myself "Be thankful Tommy. You've met some wonderfully caring people through your journey and you don't have to overthink everything."

Maybe you think they were just in the holiday spirit? Nah, I think they're like that all the time.

Thursday, July 29, 2010

Relay for Life'ing it!!!

My Relay for Life event is just over a week away!

I'd be so happy if you would consider supporting me. It means a great deal to me as this is very dear to my ♥heart♥ (and colon ;)

Donations can be made online at http://main.acsevents.org/goto/prayfortay

There is also a place where you can mail in a check if that works out better for you.

Thanks so much!

My Reason to Relay

I am relaying in honor and memory of my cousin Taylor Rivera who is one of the bravest persons I've ever known. Taylor was diagnosed at 11 years old and fought courageously for 3 years. Miss you Tay!

Tuesday, May 4, 2010

Remembering Tay...

Last week was sad, exhausting, painful, emotional - at times joyful, but completely full of love.

Yesterday, I attended a funeral for a young girl whose life ended much too soon.

I was honored to be asked by my cousin Tommy and his wife Tammy to give the Eulogy at Taylor's funeral. I was also very nervous - public speaking is not what I do best. I had written a letter to Taylor on the night that she passed away (and posted it previously). I ended up taking that letter and making it part of my tribute to her.

In our conversation with Tommy and Tammy (my brother Mondo and his fiance Kelly were there too), we talked about what else they wanted to share at the service. Instead of incorporating it into the eulogy I had written, Mondo wrote and gave a whole separate tribute. I thought it was very beautiful and truly hope that sharing these memories offered some solace to all of the people who were there to celebrate Taylor's life. I was very thankful to have my brother up there with me, and his support made the difference in being able to speak the words that I know I would have stumbled and choked up on more than I did if he weren't there next to me.

TAYLOR MORGAN RIVERA MEMORIAL FUND

A memorial fund has been established in the name of Taylor Morgan Rivera. If you find it in your heart to help, you can donate at any US BANK location.


In so many ways, Taylor was just a typical young teenage girl. She loved the things that so many teenage girls love.

She loved to watch baseball, and she got to meet her favorite player, Troy Tulowitzki a few times. She loved to play softball. She was a pitcher on a competitive team, and her coaches had faith in her as a player. Sometimes when we think of girl softball players we think of tomboys, but Taylor was no tomboy, she loved girlie things too. She loved to go shopping and to go get pedicures and manicures.

But she was also very adventurous and loved to do wild things, like go to theme parks and ride roller coasters.-But she always had to ride them with her cousin Kyle, because everyone else was too much of a chicken to ride them with her. She loved them so much that when she got to do her wish trip and could pick anywhere in the world to go, she picked Disney World. That’s what she wanted to do, live in adventure

I don’t know how much Taylor liked school, but she did really well. She loved being a big fifth grader, and being the oldest in school. She was very smart and loved all of her teachers.

As far as personality goes, Taylor was a firecracker. She had a personality that people were drawn to, and people just loved her. In school, her teachers liked her, and she had a way of getting them to open up to her-even those teachers that are pretty rough.

I think one of the many reasons that people loved Taylor, is because she wasn’t afraid to tell you what she was feeling. If she wanted something, she would tell you. If she didn’t like something, she would tell you. She said what was on her mind. She was outspoken, and not afraid to take control of the situation to get done whatever needed to be done.

But even as outspoken and bold as she was, she wasn’t a complainer or a whiner. She rarely, if ever complained about her cancer or her chemo, or the big things like that, but she kept a positive attitude, and unselfishly admitted that she knew she had something bad, but she knew there were others who had it worse.

Of course there were some things she didn’t like though-like getting up in the mornings and having to get ready. She may have complained about that. She didn’t like to be told what to do either. And the Yankees - she did not like the Yankees.

She also didn’t like needles. She HATED needles. She used to say that she would rather have surgeries than get poked by a needle. But Tay was always a good sport. One time her Papa, Frank, took her to get her flu shot. The Dr. asked Frank if he had his yet, and hating needles himself, Frank debated on whether to lie or not about having not had his yet. Since he was taking her in to get her shot and trying to convince her that it wasn’t that bad, he ended up having to get his shot too. In the end, Tay ended up comforting him, saying, “Papa, just hold my hand, it’ll be ok”

I guess it was things like that that made people just fall in love with Tay. She was sweet. When Tay would stay with other people Tommy and Tammy would get reports of how good of a kid she was, and how she wasn’t hyper and crazy like other teenage girls, and of how respectful she was. Of course when Tommy and Tammy heard this, they sometimes wondered if it was their Taylor that they were talking about.

As Taylor spent a lot of the last three years in and out of hospitals she got to meet lots of Dr’s and nurses. And lots of people worked really hard to take care of her. As they got to know her, Taylor became more than just a patient to many of her Dr’s and nurses, and they really grew to love her. A day didn’t go by that a nurse or Dr would stop by and tell Taylor that they loved her. Some of the nurses would even come in on their day off just to see her and how she was doing.

Her original Dr., Dr. Keri did conventional therapy with Taylor, and when conventional therapy was no longer working had her go work with Dr. Gore to do more experimental therapy. But, Dr. Keri insisted to be kept in the loop as to what was happening with Taylor. Dr. Kerri moved, and a few weeks later Taylor had one of her first bad scans. Even though Dr. Keri was no longer Taylor’s Dr., she still called every day for the last few weeks, just because she needed to know how Tay was doing. People have just been drawn to Taylor.

It’s good that so many people were drawn to Taylor, because she loved people. She loved being around people, whether she was sick, or was it a birthday party, or just a family gathering. And she felt the love of the people who spent time with her.

She loved her family and friends. Over and over, Tommy has told me how much all of her aunts and uncles and cousins and family meant to her, and how much she loves all of you.

There’s one friend in particular that I want to talk about, her friend Kennedy Bougher. Kennedy was Taylor’s best friend. They were diagnosed with cancer about week and a half apart from each other, and I guess through that, they formed a special bond. In their own way, they could relate to one another like no one else could. But in spite of being two young kids with cancer-they didn’t sit around and complain about having cancer and how bad things were. They talked about typical girl things, and they shared secrets like typical girls. I praise God that Kennedy’s cancer is now in remission, and I thank you Kennedy for being such a dear friend to my cousin.

Taylor loved her Nino Frank and her Nina Lisa. She knew they were always there for her and that they would do anything and everything for her. They’ve been a constant for Taylor since day one.

And even though she loved all of her aunts and uncles and family, she had a special bond with her grandparents. She loved spending time with her grandparents.

One of her favorite things to do was to get together with her nana Arlene and make biscochitos. The time that she got with her Nana to cook meant a lot to her, and she didn’t take those times for granted.

And she loved spending time with her papa Frank. So much that when she got two tickets to the world series to see the Rockies, at the risk of dissappointing her parents, she told them, “no offense to either of you, but I’m going to take my papa to the game”.

She loved her Grandma Gloria’s home cooking, no matter how simple the meal was. Her grandma Gloria could have made potatoes and weenies, and to Tay it would have been a gourmet meal. She just loved those homecooked heartwarming meals her grandma made.

And her Grandpa Paul spoiled her. Of course, he loves all of his grandkids, but Taylor was his little girl. If she wanted to go out to eat, she would tell her grandpa and they were gone. When Tommy and Tammy moved, Uncle Paul would say to Tammy, “Jita, when are you going to sign over the papers for Tay?” She’s always carried a special place in his heart.

And then there was her relationship with her brothers. She was close with both of her brothers, but to be honest, the two of them together drove her nuts. She could only be with one of them at a time, or they were just too much for her.

She called Landon “Choch”, or “Chawtee”. Every morning, Landon would go into her room, tell her he loved her, and ask to sleep in her room or watch tv. Taylor’s response depended on her mood. It could be anything from, “I don’t care” to “just don’t bug me” to “Get out!” Taylor just wasn’t a morning person.

Recently they found a note that Taylor wrote to her brother Matthew. It was white writing on black paper and said, “always remember, I love you.” And dated November 7, 2009.
As much as Taylor was a daddy’s girl, she LOVED her mom. She would say that she got her strength from her mom. As much as she loved her mom though, she was still very ornery with her, and she knew it. She once told her Nana, “I love my mom. I really love my mom. You know why I treat my mom like I do? Cause I gotta keep her strong.” When her Nana was going to tell Tammy what Taylor had said, Taylor said, “Nana, don’t tell her. How embarrassing.”

I want to wrap up with a conversation that Taylor had with her dad. When she found out that this cancer could take her, Tommy sat and talked with her. They talked about what she’s done for the hospital and the all the doctor’s. They talked about how what they learned from the experimental drugs she took might help the next kid live longer, or even save their life. And Taylor said to Tommy, something that I think she may have wanted us all to hear-she said, “I just don’t want people to start doing drugs. I don’t them want to start drinking more, and I don’t want them to hurt themselves. It’s ok to be sad, but try to move on. You can be sad, but try to move on.”

So, for everyone here, please listen to Taylor's words, and know that it's ok to be sad, but try to move on.

A letter to Taylor…
Dear Taylor,

Do you remember, during your first time at The Children’s Hospital - when it was still in downtown Denver, we went to visit you and asked you if you wanted anything. You just wanted three things:
• a burrito from Chubby's
• a drink from Starbucks
• and a pair of scissors to cut your hair off!
You said you wanted to do it yourself, and not give it a chance to fall out from the chemo. I knew from that second you would not let cancer take control of you if you could do anything about it. You wouldn't just be a survivor, but a FIGHTER!

Do you remember, The Relay for Life here in Denver? Your family got lost on the way there, and when you finally made it - your dad said you would probably only stay a couple of hours because he was worried that you would get tired.

That night we walked together in the rain and found the luminarias your family had decorated. I still have the one you made for me.

You had told us about the camp you went to for kids with cancer, and how you played a game called "Mafia" and it was soooo fun, but you didn't have enough people to play it with at home. So you taught us, and we laughed and played. You didn't go home after a couple of hours, because you played games all night. I know I got tired and had to go and rest in the tent, but you stayed up til 7:30 in the morning.

Do you remember hanging out with me and Darren and Mondo last year? We went and had pizza at my favorite place, Pizzicatos and then went for dessert at DBar. The FoodNetwork guy (Keegan Gerhard) wasn't there, but we had cakes and shakes... mmmmm. We didn't have a chance to go back when Keegan was there like we planned to, but I'll make sure to go for you sometime soon okay *wink*

Do you remember your Relay for Life last summer? When we were in line to do the Survivor Lap and each person was going up one at a time to say their name and how long they had been fighting and you clutched my arm tightly and said, "let's go together". And we did.

Do you remember? I do. I always will.

I will always remember, how you were just a baby girl when you started your battle (okay, almost a teenager, but still, that's just a baby!). It was unbelievable to me - and even after three years, it's unbelievable that a kid would ever have to go through what you did. But you went in full fight. If this was that "Deadliest Warrior" show, you would be the winner hands down!

Most of us would collapse under the weight of these challenges. But, you were so much more than your fragile body conveyed. You accepted the challenge of cancer in the same way you accepted everything: with remarkable strength, tremendous courage and with an indomitable spirit.

I will always remember, how when I got my own diagnosis just over half a year after yours, there was no question of how I would respond. You - beautiful, brave and spunky cancer warrior - had taught me a lesson. Your aura was courage-and believe me, you will never know how much I fed off of it and still do.

I will always remember, visiting you just in the last weeks when you were in the PICU and you were trying to communicate with us through the ventilator. Your mom and dad were guessing what you were trying to say and you finally just lifted your hand and in a firm gesture, made a signal that clearly said "STOP"! And they did. Sedated as you were, you were still in control.

Taylor, I don't understand why you were that one in a zillion who this nasty disease put it's grips on. You fought a great fight and you are hands down, the most courageous person I ever knew.

Three years ago, when I found out Tay had cancer, she immediately took root deep in my heart. It was unbearable to think what this family was going through and especially, this child. These kinds of things just don’t happen. But here we were. If it weren’t for Taylor’s diagnosis, I wouldn’t have these memories to share with you. Life would have went on, just like it does with so many other members of my family who I know are there, but don’t get a chance to- or maybe just don’t take the time to get to know.

Part of my bond with Taylor was cancer. I can understand PICC lines and ports, CAT Scans and PET Scans, nausea and neuropathy. I can talk about blood counts and neupogin and all that other chemo-talk... but as Taylor would say "That's boring. No one wants to hear about that!" And she doesn't need any of that stuff where she's at now anyway.
So what would Tay talk about? She'd probably talk about things like the Colorado Rockies and how they were her favorite team ever. About playing games like Mafia, Apples to Apples and Skip-Bo. About dancing and ditties and manicures and music. She'd talk about riding Rollercoasters - but only with her cousin Kyle.

That’s all just the surface. My little pocket of memories that I am lucky enough to know and have with and of Taylor. She, especially these last three years, has touched every one of us. I didn’t know her best, but what I know is precious. And in this room, is a lifetime of memories with this amazing girl.

I feel honored to have the opportunity to be able to share some of my memories with you here today, but I realize that in this room are a lot of people who know and love Talyor. A lot of people who have beautiful memories of Tay. As we come together to celebrate her life, I think it’s important that we remember that this celebration can’t stop today. The celebration has to go on. With that in mind, I ask you to think about Tay and the memories that you have of her and with her, and never stop sharing those memories. Make it a point to tell Tommy and Tammy your stories, and not just now, but for as long as Tay holds a special place in your heart.

And may we all learn from Taylor and live lives full of hope, courage, and love.

Monday, April 26, 2010

One more angel, watching over us tonight...

Taylor Morgan Rivera, 14, was called home to glory on Monday, April 26, 2010. She fought a courageous three-year battle with cancer. She was born Nov. 21, 1995, to the union of Thomas and Tammy (Montelongo) Rivera. She was an eigth-grade student at Roncolli Middle School. She enjoyed softball, music, movies, games, was an avid Colorado Rockies fan, but most of all enjoyed spending time with her family, who she loved so dearly. Taylor is survived by her loving parents, Thomas and Tammy; her brothers, Matthew Rivera and Landon Rivera; her grandparents, Paul and Gloria Rivera, Frank and Arlene Montelongo; godparents, Frank Montelongo and Lisa Garcia; uncle, Willie (Debbie) Rivera; aunts, Elaine (Charles) Jacobs, Pauline Rivera, Loretta Rivera, Lucille Osteen and Sylvia (Donnie) Coghill; numerous cousins, other relatives and friends. Special thank you to the doctors and nurses at Children's Hospital. Special doctors, Dr. Lia Gore, Dr. Kerry Moss, Dr. Meg Macy and Dr. Arthur Lui. Special nurses, Deb, Molly, Lauren, Kristen and Beth. Memorial contributions may be made to any U.S. Bank location, in the name of Taylor Morgan Rivera Memorial Fund.

Thursday, March 25, 2010

Any excuse to celebrate...

Here I am again. One more round since you know when. At least, I know when - always will.

I celebrated my 38th birthday in February. Today I will celebrate my 2 year anniversary of remission. I sorta feel like it's my 2nd birthday.

I know - any excuse to celebrate Tommy...
And you know what? YES. Any excuse to celebrate life. And even more than that - quality of life. I know I'm lucky for where I've been and for where I'm at and I know it could be gone in a minute.

Well, not much else to say than that. Next week is Spring Break and I will spending time having a check-up and probably a CT scan or an ultrasound. Good. Times. *wink*

Cheers!

Monday, March 1, 2010

Happy National Colorectal Cancer Awareness Month to You!!



March is National Colorectal Cancer Awareness Month.

And since this happens to be the exact type of cancer I have, I am plugging it here.

The American Cancer Society encourages all Americans at average risk to begin screening starting at age 50.

Despite progress, colon cancer remains the third leading cause of cancer death in both men and women in the United States.

"Colon cancer is one of only a few cancers that can be prevented through screening," said Al Stabilito, Northeast Ohio Public Relations Director of the American Cancer Society. "Precancerous polyps, from which colon cancers often develop, can be identified and removed before they become cancerous."

The American Cancer Society recommends that men and women at average risk for colon cancer begin screening at age 50. People at increased or high risk should talk to their doctor about the appropriate screening test and schedule for them.

Monday, November 16, 2009

And whadaya know. The world just keeps spinning...

Had my check-up today and met with Julie and Dr. C. Geez those people are sure nice at the RMCC - all of them. Hmm, so..... I had my CT scan at the end of September, so that was about 1 1/2 years from my surgery. Lookin' good. That's the word anyway. Doc says there is no evidence of the cancer having spread. *whew* Not that I thought it had, but still - good to hear. Good. To. Hear.

Next check-up set for mid-February. Just short of my two year "birthday".

I also met with the Genetic Testing Counselor. She doesn't feel like my family history screams that my particular case was due to genetics. Not ruling it out, she says testing wouldn't hurt. The thing is, tested or not - not matter what the results - my family would still be urged to test at the very latest, 10 years prior to my diagnosis (so at age 26). If the testing came up to positive, then testing would be even sooner. Maybe age 20. Yikes.

I told her I would think about it. Probably won't do anything right now for financial reasons more than anything. Maybe next year when I am starting out brand new racking up my Maximum Out of Pocket Expenses. Heck, they still haven't even billed me for my CT. I can't wait to see that one. Kinda shady if you ask me - this whole new insurance business. I have not had much fun with it. At least with Kaiser I knew how everything worked and, for the most part, I knew how much it was all gonna cost. They (insurance companies) sure know how to get you when you're down, don't they.

Speaking of being down...
My friend Cindy K. Not doin' so well. She had a bad reaction to her first round of chemo and has been in the hospital for a few days. Send extra prayers and good vibes in general her way please.

Sunday, October 4, 2009

I don't think you should be able to call that a Berry Smoothie...

Ugh.... My laptop died. It was about five years old, so I guess it was time. Anyhow, I thought I would try to make up for some updates that I would have made if it wouldn't have...

Let's see. Where do I start?

New Doctor
At the end of July I met my new Oncologist. Dr. Cohn with the RMCC. So far, so good. I didn't think the receptionist was especially remarkable - but the nurse that took me back for my vitals was really nice. I wish I could remember her name. She was very personable. A PA came in and talked over my history with me and I was extremely impressed when Dr. Cohn came in later on and it was obvious that the PA related information that I had just given to her and that Dr. Cohn had listened. It reminded me of that telephone game you played when you were a kid and you whisper something to your neighbor down the line and at the end the message has nothing to do with what it started out as. Except this time it actually came out the same way I told it in the beginning. It sounds like Dr. Cohn wants me to come in every 4 months for a CT scan and also recommended some genetic gene testing.

New Insurance
That all would have been peachy keen with me but before I went in for my CT scan I got a letter from my new insurance company (Anthem) saying that I was not approved due to my pre-existing condition and that I needed to provide a certificate of creditable coverage (CCC). You know, this is the one condition that I made sure I would be good to go on before I quit Sun. I wasn't going to make the move if it would mean that I would lose my healthcare coverage. I was assured that I wouldn't because I had coverage with Kaiser for such an extended period of time, I wasn't supposed to have to go throught he wait period. Well, by the time I got a response on the CCC stating that I was approved - something that I finally had to fax, call on and remain on the phone until the fax was reviewed and my status was changed - it had already been two months gone by. This really makes me pretty angry. I feel like I should be reimbursed for two months worth of insurance that I was not able to use! Yeah, I guess I could wish in one hand and...

CT Scan
So since things finally cleared up, I was able to reschedule my CT scan. Friday 9/25 I had to go back in for bloodwork since so much time had passed, but I saw that intake nurse again and again she was super nice. I didn't see Dr. Cohn. Just the lab and the scheduler to pick up the Berry flavored ReadyCat super yummy prep drink (that is sarcasm for any of you who have never had the pleasure). My CT scan was in the LoveHeals mobile unit. It's a semi-trailer that visits several sites in the metro area for people needing CT or PET scans. Also a very cool crew.

Genetic Testing
On November 16th, I will be going in for a genetic counseling review. Because of my unusual age of diagnosis and the fact that three out of my four siblings have had polyps found, Dr C thought it would be a good idea. Actually, my mom finally went in for her colonoscopy and they also found 2 benign polyps in her. Still trying to get dad in there. I will also be seeing Dr C after/during that appointment to review the results of my scan. I know that's a long time in between, but I am sure if they see anything concerning, they will contact me sooner.

Peeps & Prayers

Jeanine...
My last day of chemo will have been one year ago on October 8th-10th. Do you remember that big ol' end of chemo party I had to celebrate? Well, I remember how ready I was to celebrate. My friend Jeanine had her end of chemo party last night. I was so happy to be able to celebrate with her! She had six rounds of chemo for her recently diagnosed breast cancer. Jeanine is looking great, still has the most positive attitude ever and is getting ready for surgery, which she is happy so say will be a lumpectomy instead of a masectomy. After that, she is anticipating 30 days of radiation. Go Jeanine! In the words of your beautiful sister - You kicked chemo's ass! Keep up the fight!

Cindy Kay...
One more friend diagnosed with breast cancer. I know that she had surgery already and from what I understand, she should have already begun radiation. I haven't had a chance to talk to her, but I know that she has faith, friends and family - which is the true miracle cocktail to fight this nasty beast. Sending you my love Cindy Kay.

Taylor...
My little cousin Tay who I have talked about a lot on this blog has come to another crossroad in her cancer journey. Taylor is now 13 years old. She's been battling this disease for 2 years now. Unimaginable, but real. She had been doing so much better, on a clinical trial treatment receiving chemo for 5 days on alternate weeks. Discussion was going on about the possibility of getting the medication in an oral form. Her hair was growing back and she was feeling back to normal - even ready to maybe play some sports. She was receiving scans every 8 weeks to mark her results. Recently Taylor found out that her tumor growth had surpassed what was allowed by the clinical trial (this was her second plan of treatment) and that she would no longer be able to participate. I know, I can't imagine. I saw Tay and her family at the Miracle Party this year and she appropriately was dressed as a super hero. Tay has begun radiation - I think she'll have 35 consecutive days of treatment (minus the weekends). She still has her fighting attitude and she is always in my thoughts and prayers.

And, Life In General...
Things are going really well for me. I am really liking my new job. Love the people I work with. I am shocked at how much my son has grown over the summer. He thinks he's 5' 5", but I am having a hard time believing it. I am 5' 2" and think he might be as tall as me, but mostly - people are telling me I am out of my mind and to deal with it. My baby is growing up. He's doing awesome in school. Reading like crazy (they're doing a reading challenge and he's docked about 5,000 pages) and will be going to Washington DC for their school trip in May. I'll be going to Oregon next week for a friend's wedding and am very much looking forward to that.

Well, it's been nice catching up with anyone who still checks this site out ;)

Hope you're well.

Monday, July 20, 2009

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.

Wednesday, May 6, 2009

Pray for Tay!

I'm Relay'n people! Friday, June 5th to Saturday, June 6th


My Reason to Relay

I Relay because I want to see an end to cancer during my lifetime.

I Relay in memory of those who did not live to see that. For my Godmother. My uncle Ronnie. My Grandpa. My Uncle Sonny. For Coleman...

I Relay in honor of amazing Survivors who inspired me and gave me great hope in my own battle. For Matthew. For Heather. For Sammy. For Heller. For Tracey. For Nadine...

I Relay for those who are still fighting. For Taylor. For Jeanine. For Audrey...

I Relay for the families and friends and anyone else affected by this horrible disease. That's YOU! because, cancer affects EVERYBODY!

~~~~~~~~~~~~~~~~~~~~~~~~
My Relay for Life Page: http://main.acsevents.org/goto/prayfortay
Taylor's Story: http://www.caringbridge.org/visit/taylormorgan
~~~~~~~~~~~~~~~~~~~~~~~~

Sunday, April 26, 2009

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

Friday, April 3, 2009

12th Floor - Oncology... did ya miss me?

I had my 6 month (from end of chemo) check-up today.

While I was waiting, I saw the head nurse Julie head over to the elevators. I had wondered if she was there because I wanted to stop in and say 'hi' to her, so I went over and asked her if she remembered me. She had to take a look, but then said "Oh yeah! Your hair is longer and you have glasses! You look great, how are you..." and gave me a big hug. Her elevator came and went and she stayed and talked to me for a bit... saying it was good to see me back and doing so well. It's not always the case with some of her patients. I could only imagine how hard that would be. She gave me another hug before she said goodbye.

I don't miss chemo, but it was very strange being there all the time for six months and then all of a sudden - not. I felt like I was surrounded by some very compassionate people who really cared about me, and it kind of didn't make sense to just remove myself from that. I know, that probably doesn't make sense as I write it... in my head it does.

Dr Azar said I am doing great and that my test results were all good. The biopsy from the mass found in my exam came out benign. CT scan, clear. Oh yeah, I forgot to do my bloodwork lab. Oops. I did stop by and do that before I left and she'll let me know if there is anything to be concerned about.

I asked her a couple of questions -
  • What would be a call for gene testing? Two out of my three brothers had polyps during their colonoscopies and I think my sister did too. She is noting it and I guess there is a wait but I might be called in July or August to fill out paperwork for that to see if I qualify (not sure if that's the right word) for the testing.
  • Since I was told that I would be considered "cured" if the cancer doesn't metastasize in five years, is that from my surgery date or my end of chemo date? She asked me "Why, are you planning a party?" "Heck Yeah!!" But really, I just want to know. She said that it would be from my surgery date. And it's likely that if it will, it will probably happen within three years. It's very unlikely that it would happen after 5 years. The thing is, (she told me very frankly) - it could happen. I could also get "new" cancer.
  • What would be the word to describe me in terms of cancer? She said, "I really hate to use the term cancer-free. You're never going to be able to donate blood. You're never going to be able to stop having colonoscopies. This is always something you are going to have to keep in check. You're in remission. We hope we killed all of those bad cells with the chemo, that's why we were so aggressive, but we just don't know yet. And if you have that mindset (cancer-free/cured), and it does metastasize - you'll be pretty pissed thinking you were cancer-free." Honestly, I can deal with the term remission. And honestly, I don't care what you call me right now, if it comes back - I think I'll be pissed.
  • Will I ever have a PET scan? I have heard this term in regard to cancer a lot and have also been asked. My prep for this appointment was a colonoscopy and a CT Scan. To tell you the truth, I don't know the difference between a CT, a PET or an MRI. I trust that Dr. Azar is recommending the tests that she thinks will best suit my health needs. She said that she doesn't think that a PET scan is necessarily better, but it gets a lot of talk up in cancer circles. Each scan will detect masses, which is the point. As far as we know, all of the cancer was removed during surgery and since there was no evidence of it affecting any other organs, and there was nothing on my scan from last month - there is no change.... no growth. So as of right now, no PET scans. And the clinical trial I am on will cover the cost of my CT scans every 6 months.
What else? She told me that I should have my next CT in 6 months for my next checkup. And she assured me that I can call her or Tracey (my clinical trial nurse) anytime if I had any questions. She was happy with how I'm doing so far. So am I.

Wednesday, March 25, 2009

One down - or one up?


I had my surgery one year ago today.

So if it's true that the cancer was effectively removed in that surgery and that it hasn't spread, then I am one year on my way to being considered cured.

One down, four to go.

20%.

I know, it might seem out of control - all these "anniversaries" - but the truth is, they're on my mind. I replay in what was going on at this time last year in my head over and over again. A lot of reflection going on and I couldn't tell you if it's good or bad. It's weird... and emotional.

Monday, March 9, 2009

More follow-up...

CT Scan today. Prep wasn't great, but not as bad as the others. I had to drink a bottle and a half of this thick solution that kind of tasted like Pina Colada mix. Before the scan, I went up to Oncology to see my clinical trial nurse. She gave me a card that waived my copay - score $200. They didn't say anything about the results, but I have my 6 month check (or one year depending on how you look at it) with Dr Azar on April 3rd.

Sunday, March 1, 2009

A Year Later...

So, I guess today would be my one year anniversary...

If 2009 were a leap year, today would be February 29th. On this day last year, I made a trip to the doctor's office that put things into motion in a way I would have never dreamed of.

I've went back and read my blog from beginning to end. And I know, it's a book! But I am so glad I documented this journey. I know that I will look back on it in years to come and be grateful to remember all of the things that had a positive effect on this time in my life.

What a roller coaster ride the last year was. Physically, I feel back to as normal as I ever was. Emotionally - I don't know. Probably never will be the same, but I hope only in a good way.

Tuesday, February 10, 2009

*Benign * Benign * Benign * Benign *

I got the pathology results back and it's good news.

The mass found was as the doctor had thought - a buildup of tissue from the original surgery.
*Benign * Benign * Benign * Benign * (see post 01/23/09).

He says I'm supposed to come back in three years. Dr Azar might say sooner. Man, I hope not...

Thursday, February 5, 2009

The prep IS worse than the procedure...

So guess what I did today? I had my first colonoscopy...

I can honestly say what they say is true - "the prep is worse than the procedure". And it will probably surprise you to know, what I mean by that - is drinking almost a gallon of a salty-lemonade tasting drink was the worst!

I went in at 8am and was getting ready with the assistance of my nurse, Anne. She talked to me about her young cousin who is dealing with cancer. She said that she liked seeing a patient like me who has dealt with it and is in such good spirits. I had to look around and see if she was talking about someone else, cause I didn't think I was in that good of a mood. In fact, I felt pretty grumpy - after not eating for a day and a half!

I was alert enough through the procedure to see some of the work the doctor was doing. And afterwards he showed me the results. Good news is, there were no new polyps found. However, there was a growth that he thinks might have been a scar buildup from the reconnection of the colon when they removed the portion that included the original tumor. Hope that makes sense... The growth will be sent to pathology and I will update when I get the results.

As of now, my next step will be to get a CT Scan in March. And then I will have an appointment with Dr Azar to discuss all the results.

Oh yeah, I forgot to mention... Nurse Anne came in and said, "I don't usually do this, but I want to give you a hug" and she said she wished me well. She also said that she was glad that I was her first patient. It was a great way to set the mood of the day. How nice is that... :)