Tina Graber

Tina's story

I saw my family doctor about the bleeding on November 14, 2011. He did an exam to look for hemorrhoids, but saw "no evidence" of them so he referred me to a local surgeon. On December 1, I saw him. He reviewed everything, examined me and said, "We need to do a colonoscopy. How about tomorrow?" Well, that was the last thing I was expecting to hear, but the urgency of it did get my attention.

I had to wait over the weekend before I heard the results. He found something during the colonoscopy; in fact, he said he almost missed it. He did the whole procedure and saw nothing, until he was on his way out, then it caught his eye.

He said that it appeared to be a hyperplasic polyp, which was explained to me as being one step away from cancer. It appeared to be the size of a half dollar and very flat and deep, not a "normal' looking polyp."

Because of the location of it, he could not remove it that day, so I would have to come back the next week. Then he said it: "Of course there is the chance that we get in there and find it's cancerous." At the time I did not think too much of this comment, other than assuming he was covering all the bases. I mean, come on, I was only 32 and well, cancer wasn't the type of thing that would happen to me.

On December 12, the first thing I asked when I woke up from the second colonoscopy was, "Is it cancer?" He replied very somberly, "I think so. I am going to have you see a specialist in Denver." So, because of the way he worded it, "I think so," I am thinking this doctor could not tell for sure if it was cancer.

That morning, December 14, 2011, Toby and I left our house in Sterling at 4am to get to the hospital in Denver where the surgeon was meeting us. Enter, Dr. Craig Brown. I didn’t know it at the time, but this is THE doctor. The doctor that I would never second guess having chosen: The doctor that will become the ONE doctor that everyone deserves the chance to have. The one that you connect with; the one that is there for you through everything, high and low.

He performed a scope, and we sit down for "The Talk." For the second time in as many days, I asked, "Is it cancer?" He looked at me a bit confused and says, "Yes, Tina. You have cancer. I am sorry, I thought you knew that."

Because of the way the first doctor worded it, I thought this appointment was just to find out for sure, but that was not the case. This appointment had been meant help make the plan for the treatment of my cancer. He proceeded to tell me that he has only treated one patient that was younger than me, I don't know if that was meant to help or if it was strictly just information, but I didn't know what to do with that information.

Dr. Brown sat with Toby and I for over an hour talking diagnosis, treatment, options, everything. Honestly, I felt like I was having an out-of-body experience. I could hear him talking, but nothing was really registering with me. The emotional roller coaster I went through after hearing those words was exhausting.

Here I was, 32-years-old with two small children and a husband that needed me, and I am being told that I have cancer by a person that I just met minutes earlier: right before the most unpleasant, painful exam I had ever had in my life.

On the way home, we stopped at Target just to take a few minutes to collect ourselves before driving the rest of the way. I put some toilet paper in the cart and Toby started talking about how it was the most expensive one and did we really need the kind with lotion in it, blah, blah...I looked at him and said, "Really? I just found out that I have ass cancer and you are going to tell me that I can't have the type of toilet paper I want?!" Needless to say, we bought the toilet paper.

After we got home, we just sat and looked at each other. What were we supposed to do now? I decided that we should go to my office and tell them. That is the first time I cried: I think because that was the first time I said it out loud to someone. After leaving my office, we went to my parents' house. Toby ended up leaving me there for the rest of the afternoon. I slept in my old bed and my Mom and Dad just sat with me. I needed that. I can't imagine (and hope I never have to find out) how hard it is to watch your child fight cancer.

Treatment

The days from December 14 to December 27, my first day of chemo and radiation, are still a blur.

Phone call after phone call, appointment after appointment, meeting the oncologist, meeting the radiation oncologist, meeting the radiation techs, having the planning CT for the radiation, dealing with the pharmacy getting the Xeloda^® shipped on time: It was a lot of information in just a few days and I was overloaded.

The chemo I would have during radiation was a pill. The pill container had the biohazard symbol on it and recommended the use of gloves and protective eyewear when handling. That didn’t make me feel great about putting seven of them in my body every day. However, once I got over that, the first few weeks of radiation and chemo were relatively uneventful. I was tolerating both very well. At most, I was a little tired, nauseated at times, and did not have much of an appetite.

Then, January 19, 2012 hit. That is the day that every side effect in the book seemed to appear. It hurt like hell when I peed. Each doctor that I talked to had something new to try, but they all said it may be after radiation before I got any real relief.

Needless to say I did not like those answers so I made an appointment with my gynecologist. He did an exam and determined that I had a bacterial vaginal infection. He knew what he wanted to prescribe for it but he decided that he needed to talk to the radiation oncologist first to make sure it would not interfere with any of the other medications I was on. So he made that phone call right then and there.

This was exactly the type of doctor that I needed. Someone who was on my side and would do whatever was needed to help me get through this as comfortable as possible and with my sanity still intact. Thankfully, the prescriptions helped within a day. We did what we could to control the other side effects, but, January 31, my last scheduled day of radiation, could not come fast enough. Finally, after a week and a half of pain and just feeling horrible, that day came. I had made it to my last day! 

But no. They decided to do a three-day "boost." (During this time, they had been treating the tumor and the surrounding lymph nodes. For the next three days they would treat just the tumor.) I cried. And almost said no. But deep down, I knew my short term pain was best for me in the long run. I had come this far, and I could not stop three days short of the goal. So I did it.

Finally, on February 3, 2012 I got my diploma. I was finally done and could start to heal, or so I thought. In the middle of chemo and radiation, I got the results of the DNA tests they did on the sample of the tumor they took during one of the colonoscopies. It showed that my cancer was "spontaneous" not genetic.

As odd as it may sound, I had very mixed emotions about this news. On one hand, it was great news. It was great in the fact that it cut the risk for my two daughters developing this later in their lives. It also cut my risk of recurrence and my risk of developing other types of cancers.

On the other hand, it also gave me no answers, no reason to why this is happening. 'It's just one of those things' did not make me feel better and it’s not really a reason. A co-worker told me "God just chose you." Really? I want to know why.

Back to the days leading up to, what I came to call, "the big surgery," I was so looking forward to these eight weeks. The side effects of the radiation were supposed to subside and I would get to be normal for a while.

But, no, I had to do it the hard way. Not only was I not feeling better, I was getting worse. By mid-February, it was all I could do to keep from screaming or passing out when I pooped. The pain was excruciating. There are actually no words that adequately express how much pain there was. I talked to several docs and nurses about it, but nothing that any of them suggested helped.

Finally, I had enough and called the cancer center to tell them I needed to see the doctor, NOW. He did an exam and went to call Dr. Brown (with whom I had an appointment with the next day). After just describing the symptoms I was having, he knew what I had, a fissure. He said he would talk to me about it the next day at my appointment. This appointment with Dr. Brown was supposed to have been about taking a look at the tumor and scheduling
"the big surgery." But, of course, it turned into being about the pain I was in.

Dr. Brown said he could fit me in on his lunch hour the next day to do a procedure that would immediately alleviate the pain. Of course I said, "Yes." As he promised, the procedure helped right away, but the best part was that when I woke up, he was about 6 inches away from my face and told me, "We kicked its ass."

While I was under, he did the exam on the tumor he could not do the day before. It was still there, but had significantly shrunk. When he called to check on me the next evening, I asked about scheduling "the big surgery," and he told me that he was in no hurry.

Now that he knew the chemo and radiation had done their jobs, he wanted me to have time to heal further and relax. He thought I had "too much anxiety" to which I replied, "Ya think?!"

Finally, after a few weeks of healing and weekly calls with Dr. Brown (and me bugging him about it), I got the call that my "big surgery" had been scheduled. What a nerve-wracking phone call that is to get.

However, having said that, in my mind, this is what everything else had been leading up to. I was very ready to get this surgery done and get the cancer out, even though, having this surgery also was going to bring the thing that I had been dreading since day one: the ostomy.

Surgery

The morning of the surgery came, and I could only take the day one minute at a time. If I tried to do anymore than that, there would have been no way I could have even functioned because my emotions were so overwhelming.

I sat in pre-op for several hours waiting for my turn. My family (Toby, Mom and Dad) were doing everything they could to keep my mind (and theirs) off of what was about to happen. We were making stupid jokes and making fun of other people's conversations we were overhearing.

Growing up in my family, humor has always been how we get through things, especially lately. I mean come on…it's ass cancer: The jokes were just waiting to be made!

During my time in pre-op I met with the ostomy nurse. A very nice woman, but I didn't want anything to do with her. I didn't pay much attention when she asked if where she marked for the ostomy would work. "How the hell would I know?!" is what I wanted to shout. Never in my wildest dreams did I think I would ever have to answer that question. However, looking back I wish I had paid more attention to where she marked. I came to hate where it was placed.

Finally my turn came. I said my "see you laters" and tried to hold back my tears of fear as they wheeled me back. Before proceeding, I had to have an epidural. Of course, by that time, I am very upset, scared, and crying. I leaned on the nurse, as they did the epidural. After this, I don't remember much.

HOWEVER, I do remember Dr. Brown telling me how great I was doing while the epidural was being administered. After a 7-hour surgery and a week in the hospital, I came home. However, after getting home, I was not in a good place psychologically. I was very depressed, cried all the time, and stayed in bed most of the day and ate nothing.

I could hardly look at the ostomy, much less think about dealing with it. It took me several weeks, countless pep talks from countless people, (including Dr. Brown because my Dad called him), some antidepressants, and just sheer determination on my part, but I finally came around.

I had bigger things to worry about: Infusion chemo was starting soon, and I had to get the port placed. So, just a few days after my 33rd birthday, the port was placed, and two weeks later chemo started.

Infusion Chemo

I was the youngest in the room by at least 30 years. Before they even started, I started crying uncontrollably in front of all of these strangers. And I am not just talking little sniffle crying, but the type of crying that you can barely catch your breath. I was so scared. And the thing was, there is not anything anybody could have said to me to make me feel better about it or to have prepared me for it. I just had to go through it.

By the time that first infusion was over, it was nearly 6pm. I was exhausted (I don't necessarily think from the chemo itself, but from all of the emotions) and went home to go to bed. The pattern that was set after that first infusion, I would follow for the next four infusions.

My infusions were always on Monday. Tuesday I felt OK. Then Wednesday would hit. From Wednesday to Friday, I pretty much just stayed in bed. Then of course, there is the neuropathy and sensitivity to cold. After I was done with the infusion, the neuropathy had already started by the time I made it to the car.

Aside from the infusion every three weeks, the summer was relatively uneventful. I had my last infusion on July 23 and finished my last Xeloda on August 5, 2012. I was READY to get rid of that ostomy!

Finally, after about a month of tests, blood draws, CT scan, and an X-ray, that day finally came on September 10, 2012. I was so excited: I did not even think about being nervous for the surgery.

When I was first diagnosed, because the tumor was so low, there was a question as to whether or not the ostomy would be forever or temporary. However, after seeing the results of the radiation, Dr. Brown had promised he would hook me back up, and this is the day he was delivering on that promise.

After the surgery I remember lifting up my gown, looking at the where the ostomy used to be and just smiling. I was so happy. This had been my goal for the last 5 1/2 months.

Life after surgery

Life without a rectum was not easy to begin with.

If you would have asked me the first month after the take-down surgery how I was doing, I would have told you I wanted the ostomy back. It was horrible. I went to the bathroom at least 25 times per day for about 15 minutes each.

On top of everything else, on September 30, 2012, I was once again in excruciating pain. I ended up in the ER with a kidney stone. It was the last thing that I needed to deal with and it nearly threw me over the edge.

What else could happen?!

Well, almost exactly a year later, that question was answered. Things can always get worse.

Recurrence

By the time September 2013 rolled around, I had fully convinced myself that my cancer was just a fluke, a onetime thing. Then came my appointment on September 11 (Toby's birthday of all days). That is the day I found out it was back, now stage IV, metastasized to my lung. What a blow.

Right away, I got the port put back in and chemo started. This story is still being written.

To date, I have finished four rounds of chemo, have had a PET scan that showed the tumor has stopped growing, and the lymph nodes are less active.

I also have had a surgery to remove the top lobe of my right lung and some lymph nodes. Sometimes I feel like I am being dissected piece by piece.

The next step is at least six more rounds of chemo. With any luck, this second bout with cancer will be over by April.

Tina's advice

I wouldn't say that having cancer has defined me. That is not a true statement at all. I am so much more than a girl that has cancer. But, it is true that it is now a part of who I am.

Now, not only am I a wife, mother, daughter, employee, etc., I am also a girl that has cancer. I can't go on living a "normal" life without acknowledging that fact.

I think about it every day.

My perspective has changed, not necessarily jaded, but I definitely look at things differently now. There are so many things that I used to view and very, very important things that I now know are not.

Ever since I was diagnosed, people have been throwing around words like "hero."

I am not a hero. I am a person that is doing what she needs to do in order to be around for her kids. I breaks my heart to think I may not be here for their first dates, their proms, their weddings, and all the other big life events that, at 34, I should not have to be worrying about missing.

This is about surviving. Whether it is surviving the cancer, the day, or the treatment, it is about getting through what you need to get through with as little damage as possible: physically and mentally.

There is no other hidden agenda. It has to be about YOU, and whatever reason you may have to keep fighting. Each person has to write their own story. They have to figure out what they are going to fight for and fight like hell to get it. Nobody can do it for them.

In December 2012, I decided to turn one of the negatives into a positive. I had three radiation markers. The one on my right hip is now covered by a tattoo. It is the infinity symbol with a heart and the word "Life" in it.

Some people didn't understand why I would do that. Someone looked right at me and said "if you were my child I would tell you that you are going to regret it."

I don't regret it at all.

Before, I never would I had thought about getting a tattoo, but I also never would have imagined I would get cancer. Things change; people change. And I guess it was a good thing I was not that person's child, because my Dad was by my side when I went to get it. It means something to me. I didn't need anyone's approval except my own, my husband's; and my Dad's didn't hurt.