Saturday, December 5, 2009

My Surgery Date is Set

It has been a couple of weeks since I last wrote, mostly because there was little to tell. I have been off of chemotherapy and radiation all this time, about 5 weeks now. On Friday, I sat with my surgical oncologist at UNC, Dr. Calvo. He looked over my MRI that I had the night before and told me the news I had been hoping to hear. He agreed that it was time to go to surgery, and that restarting my chemo would not be in my best interest at this time. The date set for my surgery is Tuesday, December 15th.

The MRI had "difficulty" picking up the rectal tumor, which means that the 14 days of radiation with chemo seems to have been very effective. If you read my previous blog entries, I had mentioned that I was only half way through my treatment when my hospital stay put them to a stop. So to have such significant results, and then to find myself going to surgery before having to complete that round of treatment seems nothing short of a miracle to me. And the liver tumor shrunk as well, though I forgot to ask him by how much. During surgery, the doctor hopes to remove the rectal tumor, remove the lowest section of my colon, fry the liver tumor with some electrodes, and biopsy some of the small lesions in my liver to determine if there is more cancer there. Each of these procedures has unique challenges. The first is in removing my rectal tumor, the doctor hopes to save my vagina and uterus, but not at the cost of leaving cancer behind. The location of my tumor is near enough to those areas that there is a possibility that all of the above mentioned may be removed. The second is in removing my colon, what remains will be reattached to my rectum. This reattachment poses the most likely complication. If all does not go well, my hospital stay may be longer than the expected 5 to 7 days. A common complication in this procedure is that stool might leak out. However, given I have an ileostomy; this might be hard to detect in me. Recall from my other entry that I still pass stool naturally, even though I have a bag, in the form of mucous, and colon and rectal wall shedding. The third procedure will be that the tumor in my liver will be fried. And Takashi recalls the doctor telling us that it will be gone most definitely with this process, though I don't recall such a guarantee being made. Let's pray that Takashi is right. I have a big concern with the last procedure. Please pray that if there is any cancer in the small lesions in my liver, that the cancerous lesions are biopsied. I have a high quantity of lesions. My fear is that the doctor biopsies healthy lesions and leaves cancerous lesions behind. My hope is that EVERYTHING will be removed and NOTHING is left behind. Of course I will be returning for tests, I believe every 6 months for years to come. And I will also undergo more chemotherapy. So if something is missed, we should catch it down the road. But certainly, I don't want to ever hear a diagnosis that I am positive for cancer ever again!

For those who want to know, I will be staying at UNC-Chapel Hill NC Memorial Hospital starting Dec 15th and remaining there for 5 to 7 days after surgery, barring no complications, before I go home to Fort Bragg. There is a link for the hospital on this blog on the right side column. My recovery at home I'm told will be lengthy. I was told to expect to be in bed for a good six weeks.

So am I scared? I'd be lying if I said I wasn't. But I am hopeful. The other day I did read a story of a friend whose mother lost her 10 yr battle with ovarian cancer. I don't want that to be my story. So I deeply thank all of those who are praying for me and sending me their positive thoughts. Please continue to do so.

Thank you for following my blog. May you and yours have a wonderful holiday season. God Bless.


Monday, November 16, 2009

Back Home From the Hospital

On Oct 30th, I checked myself into the ER as my temperature had reached 102 degrees. As a chemo patient, any temp over 100.4 demands a trip to the ER, as chemo patients have weakened immune systems and often can not fight off an infection. It turned out that I did have an infection and I was admitted myself to the hospital.
On Oct 24th, almost a week before my trip to the ER, I could not have a bowel movement. To make a long story short, I was constipated in total for 2 WEEKS and 2 DAYS! And my rectum was not giving into that state. I was basically living on the toilet, trying to pass the stool that had built up inside. If I tell you I had 25 bowel movements in one day that was a good day. I was averaging a lot more, with little drips and drabs coming out at a time. It seems there should have been a simple solution to my problem. You're probably thinking, "Why didn't they just give Stacy an enema, a laxative, or something to end her problem?" But there was a lot more going on.
As a chemo/radiation patient, I had several side effects. Prior to being hospitalized, on Monday, Oct 26th, I was told that my rectal walls were inflamed from my treatments. Between the tumor and the inflamed walls, nothing was passing at the time, not even liquid. So they gave me suppositories to reduce the inflammation for stool to pass. After a couple days, it started to work, but not fast enough. Thus I came down with my fever on the 30th.
While in the hospital, the doctors were able to do several examinations. They found that I had colitis, a large radiation burn on my colon wall, and to make matters worse, my fissure recurred due to all the bowel movement attempts. Given these findings, I no longer used suppositories to reduce my inflamation. The hospital dietician recommended 1000 mgs of fish oil per day. Unfortunately, it is not a supplement I can take every day. As a chemo patient, I should not take supplements that work against my chemo, which includes massive doses of Vitamin E, super antioxidant supplements, etc. While on chemo, the idea is to let the treatments fight the cancer, and allow my body to be invaded by it's chemicals, doing it's work against my cancer. Thus certain supplements are discouraged as they conteract chemotherapy. The doctor approved my fish oil supplement to treat the inflammation only. I took it for several days, reduced my internal inflamation, and now I'm off fish oil, which is just as well, as it produced nasty indigestion burbs.
In my previous entry, I described my fissure, so I won't go into detail about that. Except to say that now it was accompanied by my internal pains, as well as surrounded by a radiated hind area where ALL skin surfaces were burned, internally and externally. The internal burn, I will leave to your imagination. To describe colitis, I borrow an excerpt from, "Ulcerative colitis is a chronic disease that affects the colon or large intestine. In people with UC, the innermost lining of the intestine, called the mucosa, becomes inflamed and develops tiny open sores. These sores bleed and produce pus and mucus. The inflammation causes the intestine to empty frequently, which results in bouts of bloody diarrhea and abdominal cramps". Needless to say, I was utterly being tortured. Each BM was excruciating, in league with labor pains. And there was a day in there where I must have neared 100 BM attempts in one day. Fortunately, by the time it got that bad, I was in the hospital and being issued pain medication. But even that wasn't enough. The pain still came on unmercilously. So I found my "happy place" to get me through. I focused on the sands and waves of the Pacific Ocean, specifically Hermosa Beach, approximately 1994. I spent a lot of time back then at my dear friend Christine Andrews’s apartment, right on the beach. Those were great times. Few things compare to the majesty of the Pacific Ocean and its beauty at dawn when waves blissfully crash on the shore and it is all you can hear.
Given my multiple complications, the doctors finally conceded to my request. I had a temporary ileostomy bag placed. And they performed a sphinctorotomy, which is a minor operation to assist healing of my fissure, basically, weakening the sphincter muscle with an incision, so that it would stop resisting any bowel movements and allow the rectum to pass stool without "a fight."
I never thought I would feel even good about getting a ileostomy bag. But I can honestly say, when the doctor came in my room on Monday, Nov 9th to tell me that they would perform that procedure, it sounded like the best news I had ever heard.
Going through cancer treatment, you learn a lot about the human body. Having a colostomy bag does not remove the need for natural bowel movements. I still have one or two a day, passing blood and mucus from my colon. But thanks to the 90 mg of timed release morphine that I now take twice a day, along with an occasional 15mg immediate release tablet as needed, my pain is pretty well managed now. So I'm pretty well medicated. If you want to see me, you'll have to come my way, as I can't drive at the moment due to these meds.
Now I am waiting for my medical oncologist here at Fort Bragg to discuss my present condition and recent episodes with my surgeon at UNC. While that happens, I am taking a break from treatment. My last radiation was on Oct 28th and my chemo stopped on Oct 31st. The doctors may decide that it is best I resume chemo next week. Or they may conclude that I go straight to surgery. The only thing I hope for in my upcoming treatment is that it does NOT include radiation, which my medical oncologist here at Fort Bragg says is an option, to rework my treatments so that it only is chemo from this point forward. I had 14 days of radiation, and am scheduled for 14 more. As for now, we can tell that the radiation has had an effect on my rectal tumor. The doctor who performed my sphinctorotomy said that it, "seemed smaller" and that it felt harder than it did previously. He described it as "fried," which is a good thing. The end goal of my treatments is that both tumors shrink significantly. And they will continue to be effected by treatment even after the treatments stop. The surgeon gives me 4 weeks off treatment before he begins working with me. All pain aside, as bad as it got, is worth it if the treatments work and my tumors shrink, especially given their precarious locations. My rectal tumor is lodged right next to my bladder and other female parts. And my liver tumor did turn up to have some cancerous lesions nearby. Four that they could identify and one on the other left side. However, given its very small size, the doctor said it will most likely not affect my prognosis. I am still very operable.
Some of you want to know what to specifically pray. Pray that my chemo treatments continue to battle my cancer through this break I am on. And that the tumors continue to shrink. Pray for wisdom for my doctors and that they openly and freely communicate between UNC and Fort Bragg, so that their plan for me going forward is optimal. And most of all, pray for God to see me victoriously through this fight. That he be with my doctors and all the others on my medical team.
And I can't end this blog without holding up my husband Takashi. These past few weeks have been extremely challenging for him, having to suddenly take on all responsibility for TK, getting him to daycare, visiting me in the hospital, etc. Now that I am home, a bit of the strain is lifted from him. He has taken great care of me since I've been home. Setting up a comfortable area for me to sleep, even buying me a new TV for my temporary sleeping quarters, and having to prep my meals. (Side note, one of the side effects of chemo is this weird reaction to cold and hot. I can not even open the refrigerator, as per the doctor’s orders). Thanks honey for all that you've done and continue to do!

Thursday, October 22, 2009

Two weeks into treatment

Since my last entry, I got my MRI results, which the doctor says are "inconclusive." The multiple lesions on my liver are between 2mm - 5mm in size, which is smaller than a 6 mm pencil eraser. No cancer lit up in them even with the MRI. But due to the small size, the doctor won't rule out cancer within them. The only way they will know for sure if the lesions aren't cancerous is if they react to my chemotherapy. So they will watch for a reaction. If they don't change, then they are benign. They might either be from a past infection I may have had, or from a hereditary condition that causes such lesions. I am hopeful that either of these are the case, and that the only cancer in my liver is in the right lobe where they found the metastasized tumor.

I also found out who my surgeon will be at UNC, and I got my first choice, Dr. Benjamin Calvo. My initial visit with him is scheduled for November 30th. And I'm certainly looking forward to getting his opinion on how my treatment has been administered thus far and if he suggests any adjustments.

The chemo and radiation treatments so far have been extremely time consuming and I am starting to feel side effects of nausea, heartburn, sore throat, skin irritation, but I also can tell that the rectal tumor is shrinking, and the bleeding has almost subsided. Most of all, the pain caused by the rectal tumor has been significantly reduced.

And finally this past week I have been so touched by all your emails and the special ways that some of you have reached out to me. I wish I had time to answer each email personally, but there just isn't. But know that each comment and email gets read, and that they certainly lift my spirits. Please keep them coming.

Thursday, October 8, 2009

1st day behind me...

Today started at 8 am with an MRI, ended with 3 minutes of concentrated radiation on my rectal tumor, and large doses of chemotherapy between them. I got home about 4:30p, exhausted. So I took a nap with my new friend, this chemo drip device that is operating on me 24/7. Fortunately, I return it on Fridays, getting the weekends off. So I can go to my nieces wedding on Sat device free.

Feeling no sickness yet. A little queasy, but not bad. I get the MRI results by Wed. It'll tell if I have any cancer in the left lobe of my liver that was too small to see on the other scans. Currently, we know I have a 3cm tumor in the right lobe of my liver. If it's already spread to my left lobe, that would be very bad news for my prognosis. Best case, it hasn't gone to the left lobe yet, and my chemo treatments keep what is there at bay until surgery.

Wednesday, October 7, 2009

How Did I Get to Stage 4 Rectal Cancer without Knowing I Had Cancer Sooner? ....A Warning About Hemorrhoids

My name is Stacy Kagawa. I am 41 years old and about 6 weeks ago, I was told for the first time that I have rectal cancer. What's more, I soon learned that my tumor had been there for years, and it was at stage 4, meaning that it had spread, and I now have two tumors. The second is in my liver.

Tomorrow I begin my chemo therapy and radiation treatments. I have set up this blog so that I can share my story with my friends around the nation, and keep them updated on my progress. But I also want to share my story with others, as they might learn from it. I was misdiagnosed, having been told for years that I have internal and external hemorrhoids. As it turns out, it seems that my internal hemorrhoid was actually a cancerous tumor. Here I willingly share the gory details of my doctor visits. Hopefully, I save someone from the misdiagnosis that I experienced. Certainly, if my cancer were caught sooner, I probably would not have it in my liver today.

I gave birth 4 1/2 years ago. A common side effect of giving birth is hemorrhoids. I had hemorrhoid like symptoms (emphasis on the word symptoms) after giving birth, and did my best to treat them. About 5 months after child birth, the pain was unbearable, so my primary care physician referred me to general surgery to have a look. It only took a moment for the general surgeon to take off his gloves and say, "We're done here." He could not follow through with the examination as I had developed a fissure. A fissure is a nasty repercussion of anal pain. It is a tear in the anus. (Here come the gory details). When pain occurs in the anal cavity during a bowel movement, the sphincter muscle can react by tensing up. The rectum responds to excavate the bowel movement. In essence, the two muscles go to war. And the rectum always wins in the end. Over time, a fissure is inevitable if the pain is not put under control. Once a fissure occurs, a doctor generally will not perform any anal scope, as they do not want to tear the anus any further. My fissure was moderate in size, and took approximately 6 months to fully heal, as they do not heal readily. Botox injections were used to relax the sphincter muscle. Multiple baths were taken daily. And passing a bowel movement felt like passing glass. It was no joy ride.

I was 37, almost 38 years old at the time. Because of my age, the doctors seemingly never considered that I might have a rectal tumor, which in hindsight is probably what was causing all that pain. And the external hemorrhoids that I did have, along with my age, served as a smoke screen to the fact. The doctors told me that my external hemorrhoids were the source of my pain, and that internal hemorrhoids generally do not cause pain. Having just given birth, this all seemed reasonable to me. After several follow-up visits, I eventually was told that the fissure was healed. I was told to be diligent about treating my hemorrhoids, given instructions on how to do so, and was discharged from care. As my external hemorrhoids and fissure were deemed the source of pain, the doctor never scoped me internally. If I could go back in time, I would make sure that the doctor looked at the internal hemorrhoid(s) too. Here comes the moral of this story, if you are diagnosed with internal hemorrhoids, insist that your doctor perform an internal scope.

Four years and five doctors later, a doctor finally had enough precaution to perform an internal scope. He didn't have to even use a device. He simply touched it and immediately knew it was a tumor. Knowing that I was under the impression that he was inspecting a hemorrhoid, the doctor put it as tactfully as he could. "If you were 10 years older," he said, "I would tell you that you probably might have cancer. We need to schedule a biopsy." I was too stunned to reply. I thought, "Did he just tell me that I have cancer?" The biopsy confirmed it. Several tests later, I underwent a second biopsy, this time of my liver. And tomorrow, I start the fight.

For those of you who know me, let me fill you in on the surgery details, as I know some have questions about that. One week ago, I was told that I had to choose a new surgical oncologist. Since the cancer had spread to my liver, my hospital has no surgeon qualified to handle my case. I was told that I could go anywhere. I decided to go with the team of doctors at UNC. Mostly because they are certainly qualified and furthermore, they have an established a relationship with my current hospital. Thus, the protocol and communication is already set-up. I feel that time is of the essence for me at this point. If I had decided to choose Dana Farber in Boston, which I had strongly considered so that I could be nearer to my family and old friends, then I might loose precious time on treatment. Time is something I just can not afford. For those of you who are die-hard Dana Farber advocates and feel that I should go nowhere else, I'll provide a link for UNC, and leave you with this. John Edwards' wife is being treated at UNC. It is one of the best places to go.

So please keep me and my family in your prayers. Studies have proved that cancer patients with a strong faith have better odds at winning their battle. So pray for my faith as well, as I haven't been as close to God as I once was in the past. These events should correct that. Also know that I am determined to win this battle.

Check back to my blog from time to time. I hope to include some interesting links, as well as update my progress.

Warm Regards,