Stacy's Cancer Story

Morning Craziness, Check. Blog, Check!

2011-07-30T07:46:00.000-07:00

OOOppps, I'm so tired that I let my hand rest on the backspace key. Fortunately, it erased just one paragraph, but I liked that paragraph a lot. Since I'm a write what you're thinking sort of author, I won't be recreating it. It's gone forever. Oh well. I woke up for the 2nd or 3rd time this morning around 4:30am, which is why I'm so tired. If I lay off the backspace key, which is impossible to do, maybe I'll finally get this new post out. Hopefully, the morning crazies and fatigue are over. Yeah, I know mornings are crazy in a lot of our homes, but I was hoping to have a lil' morning quiet time while the rest of the house was sleeping. And I did, but instead of typing on the computer, I was falling asleep on it, which happens a lot to me. My pain pills knock me out when doing anything cerebral. I can't read very much, do work on the computer, etc. So I titled this entry with a lot of determination, and some caffeine.

Since March, I've been through a clinical trail in Bethesda, MD. I think I'll send out a separate post about that. For now, I just wanted to catch you all up to where I'm at now. The trial didn't work, so now we're looking into other ones and strongly considering going to holistic/natural route. There's a therapy in Cali lead by a Dr. Sebi that I'm leaning toward right now. Before then however, I will be undergoing a 10 day radiation on a tumor found in my bone, the sternum. So you can pray about that. This tumor has been causing a lot of pain, and I'm told most of the pain will be taken care of through this radiation treatment. Yeah!

My Daily Grind, and What I'm Thankful For

2011-03-14T03:57:00.000-07:00

I last wrote in December, and there's not much to tell. I haven't had any recent scans to tell how my cancer is responding to chemo, but I can update you on my daily battle. I'm roughing it. I previously mentioned my active bowels, and a temporary solution of giving myself a daily enema. That worked for a little while, until a wound opened up, which still hasn't quite healed. There's a pain like no other when you try to pass an enema over an open wound. I tried pushing past the pain, but succeeded in repeatedly hurting myself with no results. Not pleasant! So I'm back to spending an eternity on the toilet every day. It's very time consuming, some days as much as a full time job. That may sound like an exaggeration, but it's not. I wish it were. I'm often so worn out that I have to take a nap after a long toilet session. It sometimes leaves me feeling very weak and sore, like my intestines are about to spill out of my body. Sleep is all I can do. I'd guess that it gets that intense about 3 or 4 times a week, sometimes more, sometimes less. It's not consistent. Yesterday was a good day, so I write. I should be getting another CT scan soon. I'll be speaking with my doctor about that today when I go in for chemo.

I'm frustrated mostly, as my bowels are a tremendous challenge. But I get encouragement from friends. One friend recently told me to, "keep stabbing the beast." That put a smile on my face for a day or two. I called another encouraging friend the other night. That conversation will carry me another day or two. I realize I should also be relying on God for my strength. I'm still lacking in that area. I recently got some sound practical advise about all that. I need to apply it.

For those who know that my husband is from Japan, all of his family is fine. They weren't physically effected by the quake, nor the tsunami. I spent this morning looking at hundreds of photos. My heart aches for Northern Japan. I've actually spent some time there and in some ways, it reminded me of home, with its fishing ports and small towns. It's true that my life is very difficult in many ways. But after looking at those photos, I can't help but feel guilty for grumbling and complaining in my heart about the things I am dissatisfied with (I'm not talking about bowel issues here, but matters of the heart). God bless and help the people in Northern Japan, and in other parts of our globe for that matter. There's so much trouble; in areas like Egypt, Libya, and other Muslim nations. We in the U.S. are blessed to be safe and free. Sure there were millions of dollars in damage done to the boats and yachts in Crescent City, CA. But come on, really? I saw no devastation. With the tragic exception of that 20 year old young man who got too close to the waves and lost his life over a photo op. At least he had a choice, unlike the victims in Japan.

Time Slips by and so Much to Tell

2010-12-18T15:22:00.000-08:00

I can't believe it's been over 3 months since I last wrote a post. Sorry to all of you who may be wondering all this while what's going on. To pick up where I left off, my surgery on September 29th was a success. So much so that the tumor activity, or CEA levels, measured in blood tests tested normal. This means that they successfully removed the tumors they were after in my liver and right lung. They also reversed my ostomy bag, so I'm using the toilet for my bowel movements once again. And have I made up for lost time! It's safe to say that I have had more BMs in the past 3 1/2 months than most people have in 3 1/2 years! When they removed my rectal tumor last year, they also removed my entire rectum. The rectum is used as a holding place for stool, and the colon pushes stool through. On a good day, I only have 10 to 15 BMs. Other days I have 25 to 35 of them. Initially the later was every day. After 3 weeks, I was in so much pain, I checked myself back into the hospital and was there for 2 weeks while the doctors pondered over ways in which to slow my BMs down. They even gave me liquid nutrition for about a week to give my bowels a rest. You might be wondering, "Why would a doctor remove the entire rectum?" I've learned that this is not such an uncommon procedure, and that the body in most patients miraculously adjusts. Usually in several weeks, the colon learns to adapt the role of the rectum. And in a couple months, a patient will have 5 to 10 BMs a day, with the ultimate goal being only 5 BMs. But in some patients, like me thus far, the colon does not adjust. That's not to say that mine will not, it still may. The decision is mine as to how long I am willing to live like this, on the toilet all day long, and sometimes all night, while I hope and pray for my colon to adjust. If it does not, then my option is to choose an ostomy bag for life. Needless to say, I will not make that decision hastily. So now you might understand what has taken so long for me to add a new post.

If that isn't frustrating enough, to say the least! I had a new CT scan last weekend, and the results aren't what I hoped for. The spots in my left lung turned out to be cancer, as I feared. Fortunately, they are very small and seem to have been controlled by the chemotherapy. As you may know, a patient can not be on chemotherapy while undergoing extensive surgery and the following recovery. And they delayed mine a bit longer due to my bowel issues, as chemo causes diarrhea, to complicate matters. So in all this 3 1/2 months without chemo, the spots grew a bit. And it's not just two spots in my lung, it's four. And another two new spots were found in the liver as well. I found this out on Thursday, and needless to say, I'm freaked out.

My surgeon called me yesterday to discuss what all this means. He's not concerned about the liver spots at this time. Liver tumors are slower to grow and easily treated when small. He'll burn them out. But not before I go through more chemo, as the chemo seems to have kept the small lung tumors at bay before I had surgery. So the plan now is for more chemo. I'm in my oncologists hands. What a helpless feeling it leaves. A faithful person would write that they were in Gods hands, and intellectually I know this to be true. But my heart comes through in my writing. When facing possible death, saying, "Lord, your will be done" is not easy, to say the least. I'm more like Peter after the rooster crowed, denying I know Jesus, than I am like Jesus in the garden, submitting to God's will. If I were in my Bible like I should be, maybe that would not be the case. I don't want to accept either outcome of my cancer. I just want to get well. That's where you, my faithful friends can help. Pray for my faith, as well as the obvious.

On the bright side, nothing has shown up in the right lung or rectal area. Let's pray it stays that way and that these spots are contained and eventually disappear. Also, I discovered that I am eligible for disability. I collect about $700 a month after taxes. Not a lot, but it will certainly help this Christmas. I'll be in VT with my sister-in-law and her kids. I haven't visited them in about 5 years, before my brother Scott's passing. So I'm really looking forward to it. To withstand the travel, I have to resort to an enema before flight. It's the only way I get a break.

There's actually a lot of other medical stuff I could share right now. Like how the radiation messed me up internally. I have all this scarring inside that needs treating. I have an appointment with an oncology gynecologist next month to start that process. And how the scarring from my rectal surgery is complicating the bowel issues. But I won't go into detail about the internal scarring. I'll let you all use your imaginations on that one for now. Let's just say none of it is pleasant.

What I would like to share about is the Army and church support I've received. For about 3 weeks, women from the JAG FRG, and some from my church, lent their hand to feed my family. We had so much food in the house, I had to give some away. Thank you to the JAG wives for your love and support, and to those in my church who also gave. It was a great comfort and lift to my spirit.

I'll leave you all with wishes of a Merry Christmas. Though that seems a bit flat after all I've just wrote. But I do hope you all have an amazing holiday. And that you enjoy each others company. Be kind as you shop out there, for you don't know what others might be going through! And cherish your loved ones each day, not just this season. And give thanks to God for what you have.

With much love,

Stacy

Surgery Update & Social Security Disability

2010-08-30T10:41:00.000-07:00

So my surgery date is set for September 29th. The docs scheduled it on my brother Shane's birthday. And interestingly, after my last surgery, my oncologist restarted my chemotherapy on my birthday. How weird is that? My other brother Steve has a birthday in March. I wonder what's going to happen on that day.

When meeting with my surgeons on Friday, they gave me the low-down on what to expect before, during and after surgery. There's one correction I need to make from last weeks post. They will not be operating on my left lung. Since they are not sure what is there, they're opting to just monitor what was found on the next follow-up CT or PET scan. If the spot in the left lung has grown, it will "light up" better on the scan and the docs will determine if it is cancer. If it never grows, then it's not cancer. Leaving these unknown spots in my left lung is not a very comforting thought. But the surgery on my liver, right lung and ostemy bag will be about 6 or 7 hours, long enough without having to go into my left lung as well.

I set up an appointment with Social Security today. Back in October when I started my chemotherapy treatments, the head nurse there told me that cancer patients are not eligible to receive disability. So I took her word for it, thinking that she should know. Well, it turns out that she is wrong! Recently a friend told me otherwise, some cancer patients do qualify. Why it took so long for the truth on this matter to be revealed to me, I know not. I now have a phone interview set up for later this week. We'll see if I am eligible or not.

I just finished eating my daily asparagus. Now I sprinkle cayenne pepper on it, not for the taste, but for the hope of healing properties of capsaicin. Someone should market asparagus with cayenne and other peppers to the cancer community. I'm off now to get my blood drawn at the hospital, chemotherapy tomorrow....

My Long Awaited Surgery, A Big Thanks & More Cancer Prevention Consumption Advice

2010-08-24T13:23:00.000-07:00

My Upcoming Surgery:
It looks as if I will finally be scheduled for my long awaited surgery. I should know the exact date by the end of this week. The delay in setting the schedule is because two surgeons will be involved. It seems that they can operate on both my lung and my liver at the same time. What an answered prayer! My oncologist at Womack Army Medical told me more than once that the double resection would probably not be possible. I pushed her to send my request for both to be resected at the same time anyway. And as far as I'm told, my oncologist submitted my request as such to the surgeon. My oncologist really is a great doctor. She knew it was the surgeons call and acted as such. If there's one thing I'm learning through all this, is that you have to follow your instinct and not be intimidated to push your requests through, even though the whole process leaves you feeling quite helpless.

The decision to operate now came from results of a CT scan taken about a month ago. The scan showed that the tumors are "relatively stable," meaning that the growth was slight over the prior two months, since the last scan, only about one or two millimeters growth in one tumor. And no measurable growth in the other. Switching my chemotherapy regimen from "Full Fox" to "Full Fury" seems to have worked. It virtually stopped the growth. That's the good news, the very good news, as now I can have surgery. But of course, something else came up....

The UNC doctors had their radiologists analyze my CT scan from last month, and they commented on two spots found in my left lung. They don't know what the spots are; it may or may not be cancer. The spots are about 3 mm in size. The nurse practitioner who I spoke with about it said that she believes the pulmonary surgeon will go through my left lung as well my right lung to take out what was found there, whether it is cancer or not. So my surgery is going to be quite complex, resection in my liver, in both lungs, and once and for all, removing the dreaded bag. After surgery, I should have about 3 or 4 more months of chemotherapy. And if they've removed all the operable cancer with this upcoming surgery and no more tumors appear. And if the chemo takes care of all that is inoperable, then I should come out the other end of this cancer free. A lot of "ifs" so I will need all your continued prayers.

A Big Thanks:
That leads me to the topic of support. I was soooo encouraged last week when I went home to MA for a much overdue visit. I hadn't been home in over two years. My life long friend, Lee Green, decided she wanted to throw a Silpada Designs jewelry fundraiser for me. Even though my medical bills are covered (thank God) through Army benefits, my financial challenges are still great, though my husband may not see it that way. And given my pending surgery(ies), which keeps getting postponed, I've been hesitant to find a new job. (Not to mention my chemo schedule). Now my husband, despite my cancer, has me on a tight budget, and states, "My needs are met." Not to man bash, but the simple fact is that guys just don't get women sometimes. Adding the emotional needs of a cancer patient to the man vs. woman equation can complicate matters or perhaps make them simpler, depending on the couple. Unfortunately, in my case the matter is complicated. But I digress, back to gratitude for my friends. So Lee threw me this fundraiser. I felt the love in so many ways. Thank you to all my friends, old and new, who supported that event. A special shout out to Lee (of course), Marlo White and Lisa Curley who worked behind the scenes to make it a success. For her efforts, Lee got some free jewelry to show at her next Silpada Designs party. For anyone interested in the Silpada jewelry line, visit Lee's website http://www.mysilpada.com/lee.green and contact her at leegreen1965@yahoo.com (a shameless plug for my old friend, lol).

Cancer Prevention Consumption:
I also want to share some news for cancer prevention consumption. Recently, I visited a health food store on the advice of a friend to investigate some supplements. I also got advice about them from my oncologist. Here is what I discovered. Not surprisingly, my oncologist could not recommend the mushroom based supplements, nor red clover, as they might interfere with the chemo’s effectiveness. However, she did say that one of the supplements I discovered seemed benign. That supplement is called "Graviola." The health food store owner who recommended it to me showed me a brochure promoting this supplement for cancer patients who are in the midst of chemotherapy. There's a university in PA that backs this product, and claims Graviola actually makes chemo more effective at beating cancer. I should also note that my oncologist seemed to approve of eating asparagus, as mentioned in a previous post, as well AHCC and Maitake (the mushroom based supplements) and red clover, which are all okay after chemotherapy is done.

Another discovery comes from a bulletin titled "Fire in the Belly" in the June issue of "Men's Health" magazine. It states, "A recent Korean lab study found that the compound that makes chilies spicy, capsaicin, can help kill colon-cancer cells.... The Scoville scale measures capsaicin content; the more capsaicin in the peppers you eat, the greater the benefit (and the hotter the burn)." The bulletin also cites a metabolic benefit. The Scoville scale is as follows:

Type / Scoville Heat Units
Pure Capsaicin 15,000,000
Capsicum Oleoresin (used to make pepper spray) 1,500,000
Bhut Jolokia (hottest known chili variety) 1,000,000
Orange Habanero 210,000
Tabasco (Chili) 120,000
Thai Hot 60,000
Ground Cayenne 40,000
Serrano 25,000
Chipotle 5,000 - 10,000
Jalapeno 5,500
Pasilla 4,000
Tabasco Sauce 3,750
Pablano 1,500
Mulato 1,000
Bell Pepper 0

Now I'm not about to go squirting pepper spray in my mouth, I don't like too much spice. But for the first time ever, I willingly put some Tabasco sauce in my stew last night. I'll see if I can't work my tolerance up the Scoville scale. And yes, since I've posted that email about asparagus, I've been eating that on a daily basis, well almost daily. So if I do beat this cancer, we won't know what did the most good, chemo, asparagus, Graviola, capsaicin, or what. But I will certainly Thank God.

That's all the updates I have for now. More to come once I've met with my surgeon(s).

Much Love,

Stacy

From Full Fox to Full Fury

2010-06-03T09:00:00.000-07:00

Yesterday I started a new chemotherapy treatment plan. My doctor has moved me from "Full Fox" to "Full Fury." Both plans are composed of 3 drugs, one of which is interchangeable. It seems that my cancer has grown resistant to Oxyplatin found in Full Fox. The liver tumor has grown by a 1/2 cm. So now it's time for Irinotecan, found in my Full Fury treatment. Two months of this, and I'll get another scan to see how the tumors are reacting. The doctors want to see the tumors shrinking before they schedule my surgery.

The good news is that the scan didn't show any new tumors. And the one in my lung only grew by 0.1 cm. The cancer activity around all three of my tumor locations has decreased as well. So some progress is being made.

On another note, I'm starting up a new business and can use your support. I've got a few things going on in cyber space. Go to http://www.youtube.com/user/stacykag. There is a video about a product I discovered, as well as a video about my marketing system. Check out what interests you and send me your feedback. Also, please list yourself as a subscriber to my YouTube channel so I can start getting my numbers up there. And spread the word if you think of anyone who might be interested.

Thanks a lot. I appreciate you.

Stacy

Asparagus -- Who knew ?

2010-05-15T08:16:00.000-07:00

A good friend of mine sent me the following article. Neither of us are sure of it's authenticity, but I'll be trying it out....

My Mom had been taking the full-stalk canned style
asparagus that she pureed and she took 4 tablespoons in
the morning and 4 tablespoons later in the day. She did
this for over a month. She is on chemo pills for Stage 3
lung cancer in the pleural area and her cancer cell
count went from 386 down to 125 as of this past week.
Her oncologist said she does not need to see him for 3
months.

THE ARTICLE:
Several years ago, I had a man seeking asparagus for a
friend who had cancer. He gave me a photocopied copy of
an article, entitled, Asparagus for cancer 'printed in
Cancer News Journal, December 1979. I will share it
here, just as it was shared with me: I am a biochemist,
and have specialized in the relation of diet to health
for over 50 years. Several years ago, I learned of the
discovery of Richard R. Vensal, D.D.S. that asparagus
might cure cancer. Since then, I have worked with him on
his project. We have accumulated a number of favorable
case histories. Here are a few examples:
Case No. 1, A man with an almost hopeless case of
Hodgkin's disease (cancer of the lymph glands) who was
completely incapacitated. Within 1 year of starting the
asparagus therapy, his doctors were unable to detect any
signs of cancer, and he was back on a schedule of
strenuous exercise.

Case No. 2, a successful businessman 68 years old who
suffered from cancer of the bladder for 16 years. After
years of medical treatments, including radiation without
improvement, he went on asparagus. Within 3 months,
examinations revealed that his bladder tumor had
disappeared and that his kidneys were normal.

Case No. 3, a man who had lung cancer. On March 5th
1971, he was put on the operating table where they found
lung cancer so widely spread that it was inoperable. The
surgeon sewed him up and declared his case hopeless. On
April 5th he heard about the Asparagus therapy and
immediately started taking it By August, x-ray pictures
revealed that all signs of the cancer had disappeared..
He is back at his regular business routine.

Case No. 4, a woman who was troubled for a number of
years with skin cancer. She finally developed different
skin cancers which were diagnosed by the acting
specialist as advanced. Within 3 months after starting
on asparagus, her skin specialist said that her skin
looked fine and no more skin lesions. This woman
reported that the asparagus therapy also cured her
kidney disease, which started in 1949. She had over 10
operations for kidney stones, and was receiving
government disability payments for an inoperable,
terminal, kidney condition. She attributes the cure of
this kidney trouble entirely to the asparagus.

I was not surprised at this result, as `The elements of
material medica', edited in 1854 by a Professor at the
University of Pennsylvania , stated that asparagus was
used as a popular remedy for kidney stones. He even
referred to experiments, in 1739, on the power of
asparagus in dissolving stones. Note the dates!
We would have other case histories but the medical
establishment has interfered with our obtaining some of
the records. I am therefore appealing to readers to
spread this good news and help us to gather a large
number of case histories that will overwhelm the medical
skeptics about this unbelievably simple and natural remedy.

For the treatment, asparagus should be cooked before
using, and therefore canned asparagus is just as good as
fresh. I have corresponded with the two leading canners
of asparagus, Giant and Stokely, and I am satisfied that
these brands contain no pesticides or preservatives.
Place the cooked asparagus in a blender and liquefy to
make a puree, and store in the refrigerator. Give the
patient 4 full tablespoons twice daily, morning and
evening. Patients usually show some improvement in from
2-4 weeks. It can be diluted with water and used as a
cold or hot drink. This suggested dosage is based on
present experience, but certainly larger amounts can do
no harm and may be needed in some cases. As a biochemist
I am convinced of the old saying that `what cures can
prevent.' Based on this theory, my wife and I have been
using asparagus puree as a beverage with our meals. We
take 2 tablespoons diluted in water to suit our taste
with breakfast and with dinner. I take mine hot and my
wife prefers hers cold. For years we have made it a
practice to have blood surveys taken as part of our
regular checkups. The last blood survey, taken by a
medical doctor who specializes in the nutritional
approach to health, showed substantial improvements in
all categories over the last one, and we can attribute
these improvements to nothing but the asparagus drink.
As a biochemist, I have made an extensive study of all
aspects of cancer, and all of the proposed cures. As a
result, I am convinced that asparagus fits in better
with the latest theories about cancer.

Asparagus contains a good supply of protein called
histones, which are believed to be active in controlling
cell growth.. For that reason, I believe asparagus can
be said to contain a substance that I call cell growth
normalizer. That accounts for its action on cancer and
in acting as a general body tonic. In any event,
regardless of theory, asparagus used as we suggest, is a
harmless substance. The FDA cannot prevent you from
using it and it may do you much good. It has been
reported by the US National Cancer Institute, that
asparagus is the highest tested food containing
glutathione, which is considered one of the body's most
potent anticarcinogens and antioxidants.

Please send this article to everyone in your Address Book.
The most unselfish act one can ever do is paying forward
all the kindness one has received, even to the most undeserved
person.

Ding ding ding... fighters to your corners, round 3 is over

2010-05-09T22:48:00.000-07:00

Hi y'all. I thought I'd write my May entry tonight. I've gotten a few inquiries on Facebook, so I know there's a need for an update.

On Wednesday I'll receive my last infusion of chemo in round 3. My nurses scheduled a CT scan for May 18th to see how the cancer is reacting to this latest chemo mix. This scan is the scariest one yet, as the pressure is on. If the tumors haven't shrunk, or if more tumors appear, I simply dread what might come out of my oncologist's mouth. However, I do expect that they are shrinking, as I said earlier. For now I'll go to my corner of the ring, wait until the bell rings again, and come out fighting. I guess while I'm sitting on my stool, I could pray for a miracle. Wait, didn't Rocky get down on his knee and pray between rounds? That's more like it. I'll be doing that.... You do the same from those ring-side seats.

For those prayers you've already done, thank you. The side effects have been minimal. A few mouth sores flair up each time I have an infusion (every two weeks) but they go away after a few days. Otherwise, I have some fatigue, but even that is minimal. All in all, it's going quite well.

On a lighter note, I hope to take a trip up North after I get my CT scan results. It'll probably be my last chance to travel for a while.

My boy TK turned 5 on April 16th. We had a Ben10 party with about 15 kids. It was a blast.

And my hubby treated me like a princess this Mother's Day. Not only did I get a gift basket and an amazing dinner at Outback, but he also got me what I asked for/really wanted. We're going to the Lilith Fair in August, and we got great seats!

I'll post again in June, maybe sooner. Until then....

Stacy

Hold Off on the Knives, Stir Me Up a Cocktail

2010-03-18T10:49:00.000-07:00

The CT Scan result and doctors decisions are in. On Wednesday I start up my 3rd round of chemotherapy. They're mixing up what a cancer buddy of mine likes to call a chemo-cocktail. I'll be on four different chemo drugs at once. If that sounds a bit extreme, it may be. We'll see how I handle it.

My liver surgery will be put off, as they found a third cancer spot in my lung. They assume it travelled there through my lymph nodes, which means chemo is the best option now. My treatment has focused mainly on the primary area where cancer started. I haven't been given "systemic" treatment. Systemic treatment addresses your whole body. This chemo treatment is meant to kill cancer cells all over my body. After about 2 months, they'll measure my tumors again. If they've shrunk (are responding) then I'll have liver surgery after a chemo recovery waiting period, then more chemo, wait again, then lung surgery, wait again, then more chemo.

I'm trying to stay positive in light of this latest news. It's hard not to get overwhelmed and let my mind go to dark places. I find myself uncontrollably envious of just about any healthy person I see. I miss my health, my peace of mind and my old routines. But I have to buck-up, as it's a long road to recovery ahead.

So as always, keep me in your prayers... for the chemo to work, for the side effects to be managable, and for my peace of mind. I hope to find my comfort in God. For those of you who might be inclined to do so, please pray for my faith, which has been shaken, and for me to use this dark hour to reconnect with God in a deep way.

Going Under the Knife May Be Sooner Than Expected

2010-03-11T19:50:00.000-08:00

Last night at 9pm, I had another CT Scan. It's an interesting time of day to have a procedure like that done. The hospital was eerily quiet.

On Monday, my oncologist ordered the CT Scan, as I just completed a round of radiation and chemotherapy. I am thrilled to report that there were no complications that landed me in the hospital this time, thanks to my oncologist who removed Oxyplatin from my prescription. The CT Scan will be sent to my surgeon at UNC. He is going to determine if I should go to surgery now, or continue with more chemotherapy before surgery. Either way, at least six months of chemotherapy is in my future. I'm hoping for surgery now. Let's get this tumor off my liver, the sooner the better. Not to mention, taking this dreaded bag down. I can't wait to poop normally again!

In preparation for my last round of radiation, I sat with my radiation doctor, as is customary. He prescribed 18 straight days of treatment, Monday though Friday. As he sat with me to discuss my case, he told me a piece of data that crystallized exactly what my surgeon at UNC had meant when he stated, "my margins were very close." Apparently, where the surgeon cut to remove my rectal tumor was only 1 mm from my vaginal wall. (I can't believe I'm sharing this with you all). When I discussed this with my oncologist, I shared my fears with her that I may find myself having a 3rd surgery down the road to remove that wall (yikes). She said, "Not really, that's why your radiation is so important right now". So I ask yet another thing to pray for, the preservation of my vaginal wall. I can honestly say, I never thought that I would be asking my friends to pray for ...that. Can you imagine? Eeashhh, it's a bit unthinkable.

I'll add another post to this blog soon when I receive my doctor's decision. The truth... I can wait for my surgery if the doc thinks that more chemo would be best now. The optimal word here being "best." I would like surgery now to be what is best. But not in lieu of my health.

Post Surgery - What's Next

2010-01-17T17:34:00.000-08:00

It's been a while since I wrote. My surgery was a little over a month ago. Sorry for making you wait for this entry, especially those of you who are far off.
My surgery on December 15th was a success. It was 6 1/2 hours long and dedicated entirely to the rectal region. The liver was not addressed. They simply ran out of time to get there. So I will be going under the knife once again, more about that later.
The tumor was removed from my rectal area. And biopsies of the adjacent organs and female parts were done right there in the surgical room. They took these biopsies and obtained preliminary results during surgery to determine the immediate course of action. It was decided right there during surgery not to remove my uterus, ovaries, or any other female parts. Other than the tumor, they did remove the lower portion of my colon, which was the doctor's plan all along, and not in question. In doing so, they reattached my colon to my rectum, a very delicate procedure.
For whatever reason, I was under the impression that I would only have a couple weeks recovery before restarting my chemo treatments. But they gave me a month and a half to recover. I've been off chemotherapy since Halloween. My body shows many signs of that first round even though it was cut short. My nails are missing several layers, my hair is extremely thin, my skin is changed for the worse and, of course, the ileostomy bag is a constant reminder of my cancer patient status. Also, I have been given an intense pain medicine combination. Initially, I had to administer oral medicine every 4 hours. I've since cut back, however after doing this for weeks, my sleep patterns are all out of whack. If I get a 6 hour stretch of sleep, that is a rare and wonderful thing these days. Usually I wake. Now that I've weaned myself off of the oral meds (I only have a Fentanyl patch) I don't need to wake. But I still do, finding myself having to empty my ileostomy bag. Last night, Takashi and I went to an all-you-can-eat Chinese buffet. I paid for it in an unusual way. I must have emptied that bag about 6 times throughout the night. It is highly annoying, but knowing what I am going to face next, I gladly put up with it.
A week ago, I had a follow-up appointment with my surgeon. All is well, but he gave me a piece of news I'd rather not have heard. UNC hospital's cancer board discussed my case and they want me to continue with another full course of radiation treatments. The rationale being that all their data are based on a full course of treatment, not a half course, which is what I had. So back to radiation I go, starting the first week of February. Happy Birthday to me. :-(
I anticipate that I might get radiation colitis, radiation burns and rectal inflammation once again. So I love my annoying ileostomy bag. It will likely save me from experiencing the torturous pain from my past (see prior blog post from November for that gory detail). I likely will have pain, but what I may experience is nothing compared to what I would go through if my cancer revisits the rectal area.
As for my liver, the chemotherapy that I have during my radiation should keep it under control and hopefully shrink the tumor there. And after a few months of treatment, I will go under the knife once again.
So for now, please pray that my cancer is responsive to the chemotherapy treatment. I believe it will be, as my tumors did respond the first time around. The responsiveness is the key to my recovery. The doctors can cut out what they see, but it is what they do not see that truly matters. If my cancer does not respond to treatment and tumors resurface after my treatments are done, then the doctors will label me incurable.
This brings to light another element of my treatment. I have not dismissed alternative treatments. A friend from my church had offered a drink, a dietary supplement that contains an ingredient called Fucoidan, among other super supplements. My friend claims that this ingredient is a miracle supplement that cures cancer, diabetes and many other diseases. While in my doctors’ care, I want the best chance of success for the regiment they administer. So I brought this supplement to my doctors' and nurses' attention and they all basically said they cannot recommend its use, especially while on chemotherapy. Such supplements may actually work against the chemotherapy drugs and can decrease the effectiveness of chemotherapy treatments. I also learned that chemotherapy drugs work on your body about 6 to 8 weeks after you stop using them. Since my last dose of chemotherapy was on Halloween, I have been clear of chemotherapy effects in 2010. So I have a window of time in which alternative supplements can be used. I took this Fucoidan supplement this January. So you can also pray that it does miracles for me. As such, I won’t know what cured me, Eastern or Western medicine. Who can say? But then again, does it matter? I think not. I’m in God’s hands. He is The Great Physician.

My Surgery Date is Set

2009-12-05T21:52:00.000-08:00

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.

Stacy

Back Home From the Hospital

2009-11-16T23:42:00.000-08:00

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 www.livingwithuc.com, "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!

Two weeks into treatment

2009-10-22T09:51:00.000-07:00

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.

1st day behind me...

2009-10-08T17:38:00.000-07:00

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.

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

2009-10-07T09:38:00.000-07:00

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,

Stacy