Tuesday, February 27, 2007

Tuesday Meetings

Pete and I met with three key doctors today at UCSF (Univ. of California San Francisco) -- the chemo oncologist, a liver oncologist, and the surgeon -- and we were incredibly impressed with all three. Unfortunately, the UCSF doctors are no closer to figuring out what the "freckle" is on my liver than the doctors in Marin and so we are still left with the same uncertain diagnosis (either stage 3 or stage 4). As you can imagine, this makes determining the right treatment protocol a complete gamble...which, as you can also imagine, is not really how I ideally want my life/death treatment plan to be determined. This is all so stressful beyond belief!

The UCSF doctors did have a slightly different take on how we should proceed, however, from what our Marin doctors proposed. Basically, their feeling is that (1) the spot on my liver is really small, (2) it's only one spot and it's in a place that would be easy to remove surgically if it were to turn out to be cancerous, (3) we need to get the main Devil Bitch out of my body as fast as possible before it starts kicking off any "spawn bitches". Therefore, they are recommending that I start radiation as quickly as possible (skipping the "systemic chemo" treatment that the doctor in Marin recommended) so that they can kill/shrink the main tumor as much as possible and zap any infected lymph nodes in the area at the same time. For good or bad, the radiation won't affect the liver spot because the radiation will be concentrated on my lower pelvis and the liver is higher up. Simultaneously, I will do a light dose of chemo to help the radiation work better. The chemo may or may not affect the liver spot -- this is the "big test" of all this, and also the part that makes me shake even as I write about it. There are basically four things that could happen in the course of chemo/radiation treatment: (1) The liver spot shrinks. This would indicate that it is for sure cancer, but would also be a good sign that the cancer is responsive to chemo. Ironically, the oncologist pointed out that they actually don't want the spot to completely disappear since it makes it harder to figure out later which part of the liver to remove -- who knew! (2) The liver spot could stay the same size. If this happens, they would feel more confident that it's not cancer, but still not 100% sure until they are able to biopsy it. (3) The spot could grow. Again, this would indicate that it's cancerous and would need to be removed ASAP. (4) More liver spots could show up. This is the most horrible scenario and the one that I need everyone to pray, pray, pray does not happen. I can't even go into detail on what this would mean, since it makes me too sad to think about. But just suffice it to say that this CANNOT HAPPEN!! This WILL NOT HAPPEN!! I absolutely have to keep believing that the spot on my liver is nothing and since it's nothing, there are no other spots that will show up.

We also discussed with the liver oncologist the idea of just lobbing off the part of my liver that has the spot, regardless of what the results show. That way, I don't ever have to worry about whether someone made a mistake and thought it was benign, when in fact it was cancer. The liver oncologist was not opposed to this idea. He said that he will do an ultrasound of my liver during my main surgery -- ultrasound technology is apparently much better than CT scan at determining the true make-up of a liver spot, but it needs to be done internally rather than from the outside to be accurate. And if he decides that the section of my liver needs to come out, I would need a second operation since they have found that doing both surgeries at the same time it just too much for the body to handle.

So assuming we go with this plan, I'd hopefully start chemo/radiation next week and it would last for 6 weeks. I would then have to wait two weeks for my body to heal before I could go in for another PET/CT scan to see what's happened with my liver spot. At that point, the doctors would figure out the next steps. One doctor shared with us that we need to think about my treatment plan in 2-month chunks -- there are just too many unknowns for them to map out the whole plan from Day 1. I can't decide if this makes it less daunting or more overwhelming for me.

The crazy, crazy, crazy thing about this whole experience is that they still have not officially PROVEN that I have cancer. Both biopsy results that they took came back "benign". And, while my lymph nodes looked enlarged in the ultrasound, our oncologist friend Michael shared that they consider lymph nodes to be "positively malignant" if they are >1cm. One of mine was .47cm and the other was .54cm. And the spot on my liver showed up in the CT scan, but not the PET scan, which is suppose to be the true test for cancer. So the only concrete evidence that is leading all the doctors to believe firmly that I have cancer are the ultrasound images of the main tumor, which clearly show that it's broken through the lining walls (benign polyps don't do this).

When I first shared the news of my diagnosis with Michael, he reassured me that it's the oncologists' job to prepare for the worst case, but it's my job to focus on the best case. I love this advice!! I love the fact that all these doctors are going to "throw the kitchen sink at me" and do everything humanly possible to kill this bitch, but at the same time, there is enough uncertainty in my case that I can continue to focus on the best case. I have to focus on the best case...the worst case is just too much to handle.

Sunday, February 25, 2007

Summary of My Situation

I have heard through the grapevine that there are many people now visiting this site who were not on the original email list. I really, really appreciate everyone’s support and love through this ordeal – I absolutely could not make this journey without all of you!! In an effort to get everyone on the same page with regards to what has happened so far, I thought I would re-publish some of the highlights from earlier emails, so here goes:

- Because of an ultrasound that I had last week, we know that the tumor has invaded the lining & muscle. The doctors were also able to “see” two lymph nodes. Normally, they cannot see lymph nodes in an ultrasound, so when they CAN see them, they have to assume that they are infected and enlarged. Clearly not the news we wanted to hear. These two factors classified my cancer as T3, N1 or stage 3.
- We also had a CT scan done last week (a highly sophisticated x-ray that allows the doctors to look inside all the parts of the body in 3D). This came back showing a small lesion on my liver. At first, the doctors were not concerned (benign lesions are not uncommon), but after the ultrasound results came back they became concerned. A cancerous lesion in the liver would indicate that the cells from the main tumor had broken away, gotten into the blood stream and are now circulating through my body.
- Because of this, I was sent in for a PET scan (another type of x-ray that shows “hot spots” of cancer in the body). The results of this came back with only the main tumor “lighting up”. However, there is a margin of error with PET scans, particularly when the lesion is small like my liver one (1.4cm for all you doctors out there), so there is no way to know for sure.
- Because of this uncertainty, the doctors in Marin are recommending that I be treated as stage 4, which would entail more intense chemotherapy prior to doing radiation and surgery. This would also mean that I would likely have surgery on my liver to remove the questionable section at the same time that they go in to remove the main tumor. It’s all so overwhelming, but if I can just get myself into the hands of UCSF doctors, at least I will feel confident that I am in good hands.
- Toward that end, we have an appointment this Tuesday with a Medical Oncologist and a Surgeon at UCSF. Both have been highly recommended to us from multiple sources and so we are quite anxious to hear what they have to say. In the meantime, my neighbor (the liver specialist) is going to view my CT scan results and see if he can figure out what exactly is going on in my liver. I pray, pray, pray that he does not think that it’s cancer!!
- For those of you who are blessed enough to not have any experience with cancer, you'll hear me reference three main doctors as we go through this. The main doctor (the "ship captain") is the medical oncologist. This is the doctor who determines the chemotherapy protocol and is first in line in terms of monitoring progress and addressing side effects, etc. The second doctor who I will deal with is a radiation oncologist, who is in charge of administering the "Hiroshima blasts" to my abdomen. From what we can tell, this is a highly technical role that relies heavily on computer programming. Lastly, I will be working with a surgeon who will be responsible for taking out the tumor and lymph nodes once radiation is done. Hopefully, I won't need a liver surgeon, but in the event the spot on my liver does not get resolved, I'll have one of these doctors as well. As the doctor last week pointed out, cancer is a "team sport".
- Lastly, thanks to my amazing cousin Jeremy and his wife Shannon (who are both doctors and have been my personal advisors through all this) we have now officially dubbed the tumor "The Bitch" and we are kicking off "The Bitch Must Go" 2007 campaign. My friend Gale is helping me to get t-shirts made with the campaign name so that I can wear mine to chemo sessions. Let her know if you would also like a campaign t-shirt: galealove@yahoo.com. And when she and I run the Nike marathon next year (it was our goal this year, but obviously needs to be postponed) we will print up new t-shirts that say "The Bitch is Gone!"

That’s about all we know for now. Stay tuned for more updates on Tuesday! And please keep the prayers and emails coming. Even if I don’t answer you, please know that I absolutely treasure getting your words of support and love.

Symptoms of Colorectal Cancer

Many of you have written to me asking me what symptoms I had that prompted me to go in for a colonoscopy. Since anyone who is reading this blog is, by definition, someone whom I care about I thought I would share this information with everyone rather than responding individually -- since if I can spare any of you the nightmare that we are going through, I would be thrilled. Here is a list of symptoms that you will find on the cancer.gov website for colorectal cancer:
  • A change in bowel habits
  • Diarrhea, constipation, or feeling that the bowel does not empty completely
  • Blood (either bright red or very dark) in the stool
  • Stools that are narrower than usual
  • General abdominal discomfort (frequent gas pains, bloating, fullness, and/or cramps)
  • Weight loss with no known reason
  • Constant tiredness
  • Nausea and vomiting
I had the first 3 symptoms. Unfortunately for me, when I mentioned these to my OB/GYN two years ago, he attributed these symptoms to simple hemmoroids due to my pregnancy. And when I mentioned them again 6 months later, he attributed them to hemmoroids due to breastfeeding. And so it wasn't until the symptoms persisted 6+ months after I stopped breastfeeding that I finally sought a second opinion from my cousin and his wife.
The scariest thing for me is that, other than these symptoms, I feel great. I work out all the time, I have lots of energy, I rarely get sick, etc. And so it seems so incredible to me that I could feel this way and yet have stage 3 and possibly stage 4 cancer.

I could spend the rest of my life wondering "what if"...what if my doctor had been more concerned...what if he had suggested that I get further tests done when I first mentioned this to him...what if I had been less scared about having a colonoscopy...what if...what if...but I would drive myself completely crazy and I don't have an ounce of energy to spare right now worrying about "what if". The fact is that this is my reality now and I just need to figure out the best possible way to beat it.

Please don't be afraid to have a colonscopy done -- they put you out completely (or at least my doctor did) and so you don't remember a thing, and it could save your life.

Mixed Emotions

Yesterday was full of such mixed emotions for me. I decided to reach out to a mom's group in my area to see if anyone in the group had experience dealing with advanced colon cancer. One mom wrote back and said "My brother-in-law died last year. It was awful. How can I help?" She later apologized for her response; she did not know that I was seeking info for myself. Needless to say, though, her response sent me into a fast downward tail-spin. The emotional rollercoast of cancer is unbelievable!! One minute I am feeling energized and writing about "Killing the Bitch!" and the next moment I am crumbling.

Luckily, I was able to stop the tail-spin by talking with this mom and her husband, Denis (it was his brother who had died). They shared with me that the enormous, life-costing mistake that Denis' brother made was to not go forward with the recommended surgery. He was told that he would end up needing a permanent colostomy (this is a procedure that results in the small intestine being routed out the abdomen and is done when there is not enough unaffected colon left to reattach) and he just couldn't fathom the thought of living that way. When he finally changed his mind -- 6 months later -- it was too late; the doctors opened him up, took one look inside, and closed him up again. Denis also shared that his brother never really took the cancer seriously -- he didn't change his diet, he didn't seek any additional opinions, he didn't even share his medical records with Denis (who is also a doctor) for almost a year. He just kept believing that the cancer was "surreal" and that it would somehow go away. Hearing this story gave me a ray of hope. Unfortunately for Denis and his wife, it is people like his brother who make up the statistics of non-survivors. But I have to believe that everything that Pete and I are doing will squarely land me in the survivor's camp.

Pete and I talked yesterday on the way to church and he helped to reinforce for me that I can no longer view my cancer as "surreal". This is my reality. This is my life. And if I don't start fighting this Bitch head-on, she will take my life. I cannot waste one ounce of energy being depressed or despairing about my situation. It is what it is and I need every bit of strength to go towards getting cured. As I laid in bed last night reflecting on this I began to finally and honestly get in fighting mode. I decided that every time I become weak, or despair, or begin to think about how life would be were I not to make it, that this is the cancer talking. This is the cancer's way of infecting my thoughts and disabling my will. This is the Bitch trying to slyly trick me into thinking that I can let down my guard. And I cannot let that happen!! This Bitch will NOT win!!!

Friday, February 23, 2007

Liver Specialist

We have another neighbor who is a doctor at UCSF. He has been on vacation until today and phoned me as soon as he got my urgent message. It turns out that he is a liver specialist (Thank You, God!!) and he is going to review my CT scan to see if he can determine whether the spot on my liver is cancer or a benign cyst. He said that he would provide his thoughts/recommendations to the oncologist that we are scheduled to meet with on Tuesday. I am scared to death to hear the results.

My Mountain

I felt myself falling…down…down…down…not knowing when I would reach the bottom or whether there even was a bottom. It all began when I heard the word “cancer” and I stumbled backwards in shock and horror and disbelief. I did not know that the edge was so near, the drop-off so steep, and so I lost my balance and -- arms flailing wildly -- backwards I fell. In between my tests, my falling would slow. And at times, my body would even stop for a moment, resting against a rock, allowing me to gather strength. But then the news came: T3, N1. And the rock gave way and I began to plummet.

Falling is such a horrifying sensation. My body reaching out in desperation for something sturdy and stable to grab onto; seeking permanence to rest upon, a rope or a hand to grab that could pull me to safety. But there was only air and the feeling of the wind rushing by, so loud that I could barely hear.

On Wednesday, my PET scan came back and showed no signs of cancer anywhere else in my body. And my body finally stopped falling and came to rest on solid ground.

From where I lay, I slowly, cautiously peered over the edge, down to where the very bottom is and I screamed “Thank You, God!” at the top of my lungs for he stopped my fall before it took me all the way down. And then I slowly turned my head upwards and I saw the biggest mountain I have ever seen, rising above me toward the heavens. Far, far, far in the distance I saw the top. I know how beautiful life is up there; I was just there a moment ago. And I know that I must begin to climb. I must climb with every ounce of strength and determination and grace that I have in my body. For I want to be back at the top, surrounded by the people and the things that I love. The doctors call my resting place “Stage 3”, but I prefer to think of it as ”Base Camp 3”, for this is simply a temporary place for me stay while I prepare for my long climb back up my mountain.

As I begin to catch my breath and plan my ascent, I hear a rumble in the background. Before I can even blink, an enormous boulder crashed down the mountain, knocking me off my feet and sending me catapulting over the edge again…falling… the roar of the wind…the rush of air…when will I stop??

I don’t know where I am now. I see Base Camp 3 – my “safe” resting spot – far up the mountain. I don’t know if I am at Base Camp 4 now or just somewhere in between. Where is this no-mans-land? Part of me wonders if I would feel safer knowing with certainty that I was at Base Camp 4. At least I might find others there as well who could tell me how to get home; I might find guides who know which paths are the safest and fastest way back up. But instead, I am left guessing and gambling on which path to take. What if I choose the wrong path? What if I never make it back up? These thoughts are so overwhelming that I feel almost paralyzed. What I do know, though, is that I am not lying motionless and forever breathless at the bottom of this mountain. I know this with a level of clarity that I have never felt before. And as long as I am not at the bottom of this mountain, then I am equally confident that I must find faith in my heart to free my limbs from the paralysis that binds them. I must begin to climb. Falling to the bottom of this mountain is not a option. It is not an option!!

My amazing husband is gearing up…He has his harness on and he is checking and double-checking our ropes. He is the one who has me on belay; he is my climbing partner. He is the one – along with my doctors -- who will ensure that my ropes don’t snap, sending me plummeting back down to the dark, lonely bottom. And at night, he carefully lowers himself down to me so that we can sleep together on the side of my mountain. We snuggle close on our hanging bivouac and look up at the beautiful nighttime sky, full of stars and mystery. He tells me to be strong and he tells me that he loves me. And he reminds me that tomorrow, when the sun comes up, if I look up to the top of the mountain I will not only see him pulling me to safety, but I will also see all of my incredible friends and family yelling and screaming their love and support. And he reassures me that when I look beyond all those beautiful, familiar faces, I will see God shining down from above, warming me and lighting my way with his presence.

And each day, Pete promises me, two breathtakingly beautiful angels will swing down to me in their harnesses and ropes to help me smile and to give me strength and hope as I climb. They might come down to show me their new Lego creations, or to share with me an interesting rock, or to give me a big hug, or to just flash me their dimpled smiles before they scurry off again to explore the world. But I know, as Pete does, that these little angels are the ones who will make sure that God know how much I want, how much I need to live.

And so it is with faith in my heart, a mind-numbing fear in my bones, and a strength that I never knew I had that I begin my long climb up my mountain, back to the top.

Wednesday, February 21, 2007

Opening Doors

When the door of happiness closes,
another one opens.
But often times we look so long
at the closed door that we don't see
the one which has opened for us.