I slew the Dragon!
(Whew, I made it!)
Jesus Loves Me!
Thanks to all of you, so many of you, who wrote and prayed for me.
In a nutshell, surgery revealed that the cancer was caught early, it was all removed, chemo was applied, and my first post-op CT Scan indicates that I am cured!
I am so grateful to you all, and although I couldn't answer all the emails and calls I received, please know that I read and heard them all, and every single one meant so much to me.
LEFT: Almost back to normal on 3/27/07; RIGHT: Riding my Screamin' Eagle Fatboy on 3/15/07.
(For the "before" story, click HERE)
ABOVE: Oh, my favorite place to be (taken 3/28/07).
10/4/06: (Two days before surgery): I wanted to spend some time with my good friend, Althea, so we made plans to have lunch. On the way back, she had me swing in at her church. It was a beautiful place, quiet and serene with its stained glass windows, wooden pews and Althea's flower arrangements. We had the place to ourselves, and she gave me my own personal church service. First, she sat down at the piano and played hymns for me. I read along in the hymn books as she played, and memories from my childhood flooded over me, when I used to spend Sundays with my grandparents at their little hometown Methodist church. The smell, the ambiance, the music, I could just hear everyone singing while Althea played. She was so terribly cute when she messed up . . . that just made the music and the experience all the more precious to me. Afterward, she beckoned me to the alter, we held hands and prayed, and we both fought back the tears.
My friend/customer, Catherine from California called and led me through a long, thoughtful prayer on the telephone. So many people expressed their well wishes through phone calls and email -- even strangers who didn't even have a horse!
10/5/06: (Night before surgery): Rob and Becky Bowden, whom I had met online, visited and stood at the foot of my bed, angels. Becky had already been through what I was going through the next morning, and to have a survivor standing there was so encouraging and morale boosting.
10/6/06 - 10/20/06: I spent two days in ICU, and while the surgery was catastrophic, I managed to heal so well that I went home in 14 days.
10/21/06 - 11/3/06: Weak, but glad to be home, I actually cooked meals and tried to exercise, taking walks down the driveway, but after about a week, I started to get nauseated, severe stomach pain, dehydrated, insomnia, and was readmitted through the emergency room on 11/3/06, one day before my birthday.
Now the real torture began. I was put on intravenous feeding and could not eat food for two months, because my stomach shut down as a nasty side effect from the chemo. I had radiant pain from my stomach which traveled up my shoulder, and on Thanksgiving Day, I spent 15 straight hours in severe pain, which no drug would alleviate. The worst part was probably cabin fever, from spending a lifetime being independent and hardly ever sick, always working, but now I was so weak that I could only walk for 10 or 15 minutes at a time, and that was having to push an IV pole everywhere I went, not to mention tubes everywhere. Hot showers had always been my therapy, but now they were major chores with all the precautions I had to take for the tubes and IV lines. Depression set in, as I wondered if this was the end of a normal life for me.
11/14/06: There is a
"naughty" wife who comes to visit her husband up
she brings her scissors in her pocket, stops at the parking garage
and snips a few flowers to bring up to her hubby for his room. So
far, nobody has stopped her.
The other morning, she found one red flower, and a few yellow ones, so she snipped them all and brought them upstairs, as usual, to her husband. When she went to put them in the vase, she thought the red one looked standout, so she removed it. She set the vase with the yellow flowers on her husband's window ledge to brighten the room, and then wondered what to do with the single red flower.
She decided to walk next
door and give it to the patient in the next room, so she knocked, peeked in, introduced herself and gave the
single red flower to the lady lying in bed, who immediately choked up and began
to cry uncontrollably. She took the wife's hand, held it, and tried to
get herself together to explain.
This emotional lady was scheduled for surgery later in the day, and the night before, terrified and worried, she had prayed to God for a sign that her surgery would come out okay. She asked for a sign specifically in the form of a red flower, so that she would know it came from Him.
my doctor, Dr. Laura Lambert, pulled out all the ammo and had me
wearing sea bond bracelets for acupressure, a patch behind my ear, round
the clock Zofran, and other any other medications she could think of.
She was so wonderful, always compassionate and striving to eradicate pain
and nausea any way she could. I was dying of thirst all the time,
dreaming of a big, cold glass of orange juice, but when I drank even water, my stomach hurt
badly from it. The thirst was worse than the
pain, so I drank water, crunched ice chips and dealt with the pain. They were worried
about possible obstruction or ulcer or tumor, so one week, I spent
almost every day getting wheeled around to different floors for
Since my rib cage was cracked open during surgery and held open with a retractor, it hurt to inhale deeply, sneeze, cough or even yawn. I had x-rays, CT scans, and an EGD (scope down the throat). The x-ray was not so bad except I was still so sore, but the CT scan is always bad because of the solution you have to drink, and the IV to shoot the iodine.
The day of my EGD, they wheeled me and my bed down
to that department to wait my turn, and they kept me waiting a really
uncomfortable 6 hours. It was the most horrible experience -- we were in cubicles with curtains a couple of
feet apart from each other. We could see our neighbors across the hallway and everyone
could hear everything. The guy
across from me was suffering from a tumor so big on his esophagus
that he couldn't swallow his food and had to eat baby food to survive, yet
still, he had a great personality and attitude. He asked for them
to inflate his esophagus and enlarge it some during the test so that
he could eat more easily, and horror of horrors -- they told him no,
that it might crack the tumor and cause a hole in his esophagus. He
took the news cheerfully. I was amazed at his and his wife's attitude,
especially when I heard her say that she was a breast cancer survivor.
The lady next to him, whom I could see, was very, very sick and the poor thing managed to sit up and vomit repeatedly. She was so weak that she couldn't call loudly enough for the nurse, so I had to get up and go get someone for her. She thanked me and I felt so bad for her. She was suffering so badly from radiation treatments.
I heard the big guy to my immediate left tell the nurse his weight and height (6'4"), and he was friendly and talkative to the doctors. He waited his turn, too, but after awhile, he began to hurt and scream and yell in pain, begging for help, calling the nurses. They came running back and asked him what to do for him, and he cursed them out repeatedly. They handled it with quiet grace and tried to make him more comfortable. Just an hour before that, he had been pleasant and flirty with the nurses, a cute personality. He was having a rough time with pain and was yelling so loudly that I began to cry uncontrollably, and I begged God to spare him, to pass the pain around the room and let us all take a share of it to give him some relief. They finally got him sedated enough that they took him back for his procedure.
Then there was the lady at the end cubicle who had the most cheerful attitude -- she had gone through total mastectomy and restructure three years earlier, and then a bad car wreck that messed up the ligaments in her arm. She was there to get a colonoscopy but nobody could get an IV started on her due to the damage from the car wreck. I listened to them slap and slap and slap her veins forever, and heard her demeanor go from cheerful to anxious. They finally called in the IV team, and that girl had some trouble, too. This trouble and ceaseless slapping went on for no less than an hour, and I heard this lady say that she had never considered herself superstitious but she was starting to have bad feelings about having this procedure done with all the trouble. The IV girl finally got it going and the lady wanted her name put on her chart so she could request her from now on. They wheeled her away.
Then another couple came in to get ready for a colonoscopy/EGD for the man. The wife was so over cheery and friendly that I thought it was unusual -- must be an employee or girlfriend of the husband -- no wife would be THAT gushy! lol. She was saying chirpy things to him like "I'm going to take care of you sooooo gooooood, honey bunny -- you just don't worry about anything. When we get home, I'm going to spoil you." A little later, when the nurse was quizzing them, I found out that not only was she a breast cancer survivor herself, but that they had been married for 32 years. That was very touching to me, their obvious deep love for each other, even if it did look a little corny to some skeptical but open-minded outsiders.
After lying there for two hours, I called one of the nurses back and asked if it was possible that I was going to have to lie there all
day in that waiting area. She snapped at me that there were people ahead of me and I had to wait my turn. By the time everyone was
gone and I was the last one, six hours later, I asked this same nurse why I couldn't have been left in my own room, by my own bathroom, without all the trauma exposure. She just sighed and said that the doctors liked to have the patients waiting there, not them waiting on the patients. I didn't understand that to the extent of a six-hour miserable wait, but I did try to take away something positive. I
could see, from watching all those people, that apparently my cancer was discovered early enough that I don't have near the problems that many of those people have. That experience was very uncomfortable and depressing in that waiting room, but it was eye opening and made me cognizant of my blessings.
For every burden that we bear; For every sorrow, every care;
THERE'S A REASON.
For every grief that bows the head; For every tear drop that is shed;
THERE'S A REASON.
For every hurt, for every plight; For every lonely pain-racked night;
THERE'S A REASON.
But if we trust God as we should, All must work out for our good.
HE KNOWS THE REASON!!!!
Finally, I got to the point where I was going to have a nervous breakdown if I had to stay in that hospital another day, so my doctors sent me home on TPN (intravenous feeding). I was quite weak, and my boyfriend of five years was too busy to have time to help me, so I asked my daughter for help. She quit her job and stayed with me for almost two months, a complete angel . . . she took a short class on how to take care of port sites, learned how to hook up my IV, and moved in with me for awhile. She was compassionate and kind, going above and beyond the call of duty. During this time of recovery, I was so miserable that I dreaded each new day, which was simply just another day of misery. Nights were even worse, as I had to hook up the cursed, disgusting IV and carry it around with me. I could not sleep, and would toss and turn, dying of thirst, but knowing that if I drank anything, I would be in severe pain. Life was just miserable, and I wished I would die . . . I realized that my spirit was broken, and I fought nausea constantly. My doctor assured me that one day, my stomach would start working again, and finally, right after Christmas, it did, just barely. My first meal was six tiny beans and 2 slices of potato. During all this time, I tortured myself by watching the food network, learning how to be a chef!
You cannot believe how weak you are without the benefit of the nutrition of food, and at Christmas, I tried to do a little shopping, but I was way too weak. We had to park in the handicapped section and then I had to be wheeled in a wheelchair, or use one of the motorized buggies. I noticed that nobody wanted to make eye contact with a person in a wheelchair . . . I sadly realized what handicapped people have to deal with.
I found that while the world is full of good people, and I am still getting very touching, caring emails from so many, there are a some who are just not very nice people.
After I got out of the hospital the second time, I had a friend (whom I had nursed through two hospital stays in 2006) take me to the medical center for lab tests and checkups. This friend apparently really didn't want to be there and wanted to be back home working. We drove up to valet park, I got into a wheelchair (since I was still too weak to walk that big complex), and he wheeled me to my first appointment. We were cruising down a long hallway when we came up behind an older couple walking very slowly. This "friend", instead of slowing down, actually crashed my wheelchair up onto this couple's heels. I was shocked, and so were they. None of us could believe this had been done intentionally, and he chose the moment of confusion as an opportunity to wheel around and pass them. I asked him to slow down, and reminded him that we had plenty of time, as we were early.
As we neared an elevator, the light above it came on, I heard a 'ding' and the doors began to open. As the people onboard began to step off, my driver chose not to slow down again, and he crashed into their shins. I was terribly embarrassed, apologized profusely, and again, asked him to slow down. As we came to the end of the hallway and had to turn down another corridor, he didn't take the time to check to see if anyone was coming from the other direction, and again, he crashed into more people. I asked him to stop using me for a weapon, and after awhile, I realized that he quit talking to me. When I asked him why he was being silent, he said that he was sick of me telling him what to do.
I burst into tears, remembering all the times I took my mother to her appointments and how kind I was to her, and wondered why I was trapped with this evil person. We parked in the waiting room, and I tried to get myself together and stop crying. After about 10 minutes, he slowly leaned over to me, and I thought he was going to apologize. He whispered into my ear, "I can't believe you're behaving this badly." I realized, at that point, that this person was not only not a friend, but in fact, was subhuman!
12/6/06 Home Healthcare -- Each week, they have to draw my blood and do lab work to determine exactly what formula to make my TPN feedings. My paperwork states that I need an RN, but the healthcare service sent an LVN out here the other day, a male who was a bit goofy. He came in with one of those butterfly looking things that they stick you with to pull blood, and I told him that I was not being stuck, I had a PICC line and he could pull it from there. He said, "Oh, goody" and stuck the needle from the butterfly valve into the port. I realized then that he knew nothing about PICC lines, and he didn't have the connection to pull it, so I told him that I would get a new syringe and he could pull it from the port, then inject it into the tubes. They had done that a few times at the hospital, and then I had to show him how to connect the syringe. He messed up one tube and filled three properly, then as he went to fill the small, blue one, he pulled the stopper off accidentally, and didn't even fill it all the way. I thought that since he had let all that air in, it probably wasn't going to be any good, but he took it anyway and didn't even try to do it again. Afterward, I made him flush and put heparin in. It was at this point that he told me that he was only an LVN and I should not tell anyone that he drew out of my port. Just great.
The next day, I was sitting on the sofa, fresh out of the shower in my gown, hair up in a towel and he came driving up. He pops out of his car and informs me that the blue tube was rejected and he was there to pull more. I told him that we could not do that, because I had run out of saline flushes the night before. He then asked me if a had a bottle of saline, that we could make one up with a syringe. I didn't like this idea at all, and he even went out to his car to see if he had a bottle. Thankfully, he didn't. Then he insisted on drawing the blood and said saline flushes weren't necessary anyway, that they were just to make everything "pretty", and that we could flush with heparin. At this point, I threw him out. I told him we were not doing anything without saline flushes and that I was not going to allow him to stick me, either. He left, saying he'd be back the next day, after I received my shipment of saline flushes, but I called the home office and told them that I wanted an RN from now on, who had authority to draw from a PICC line. Oh, and as a bonus, he STUCK HIMSELF with a needle that had my blood on it. He asked me if I had any blood borne diseases, and I started to tell him yes and make him worry, but I told him no. He asked if I had a band aid. I think this guy needs to go back to school!
12/9/06 I feel like I am languishing in Hell, as a matter of fact. I dread the nights because they are horrible, and I hate the feeling I have each morning. I used to look forward to each new day, and now I wake up NOT looking forward to the new day, no matter how beautiful it is, because I am suffering so badly. I wish they could make me comatose for two weeks and I'd wake up healed. Life is not enjoyable for me right now -- not at all.
12/31/06: I was awfully emotional while taking care of my mother (colon cancer) for a couple of years, and now being the 'victim' myself, I was very emotional before and now after the surgery, and I seem to burst into tears over lots of things. I'm so pathetic that I actually broke down crying in the animated movie "Ice Age", where the missing baby got returned to the father. An ANIMATED movie!
"Worry looks around, sorry looks back, Faith looks up"
I've been reading Joel Osteen's book (a gift from sweet
Catherine from California), and he says that we should live
our lives expecting good things, not hoping, but expecting. He says
to live "favor-minded", because God wants to bestow favors upon us,
and that if we go through life acting like we deserve to be treated
special, we will.
The example he gave made me laugh, where he took his family to Hermann Park in Houston on a Spring Break weekend and couldn't find any parking places. He drove around and told his family to watch him, that he had the favor of God all over him, and he was going to get a front-row parking spot and went on and on about it, really enthused. He wound up not only getting one, but the premier one in
the whole place! He leaned over to his wife and told her to reach over and get some of the favor off him, because he couldn't stand it
all. She just rolled her eyes.
Today I went to run some errands, and left the house "favor-minded". I got hungry so I stopped by a fried chicken restaurant. I asked for two drumsticks and a small drink, and the cashier immediately began trying to sell me a cheaper dinner. The drumsticks were $1.80 each, but I could get a combo meal with a side and drink for a better price. I knew I couldn't eat all that, so that wasn't going to work. She turned around to her manager and asked what kind of deal they could make me, and the manager, who seemed to be irritated, said it would be $3.60 for the drumsticks and then add the price of my drink. (You know that you can buy a whole chicken for $3.60, right?) Right as the cashier began to ring me up, the manager changed her mind and told the cashier to charge me for the drumsticks, but give me the drink for free.
(I know it was just a soft drink, but it made my day.)
I saw my daughter, Krystal drive by as I was leaving, so I followed her to McDonald's where she was returning a movie. I rolled down my window and motioned for her to come over. As she walked up, I told her the story, showed her my 'free' drink, and then said, "Reach in here and get some of this favor I have all over me. . ."
She rolled her eyes.
1/5/07: I have been communicating with a 32-yr-old man in Sweden who is suffering from PMP, and he has asked for advice before his surgery:
"Christoffer, I used to lie in that hospital bed and watched that evil clock tick off one second at a time, wishing the minutes would go by faster so that my body would be healing faster. My doctor and everyone else told me to "have patience" and to have faith that I would heal and things would be better, but when you're imprisoned in a 14 x 20 room with tubes coming out of you and everyone telling you what to do, it's hard to have patience. That three months felt like three years, but I'm here to testify that when you're down and feeling like you'd rather die than wake up in that room again, there IS indeed a light at the end of that tunnel!! So take my advice and don't have a room with a clock in it!! lol"
(Unfortunately, during Christoffer's surgery, they found that his disease was too far advanced, and now he hopes simply to control his disease long enough to try to raise his two young children, before it takes him.)
1/8/07: Today, Dr. Lambert said my
blood work looks good, tumor markers
normal, no reason not to remove the PICC line so the last dang tube is
GONE from my body!!
Three weeks ago, my daughter, Krystal had to wheel me in a wheelchair to my appointment because I was too weak to walk. Today, I stepped out of the car and walked the whole way. When we left, I told Krystal that I felt just exactly like I had been climbing a mountain for the last year, struggling for each and every handhold and scared of falling, and that I had just reached the top, took a deep breath and now on my way down, finding it easy and relaxing to descend. I'm going to enjoy that feeling as long as I can without trying to let thoughts of recurrence interrupt.
Then, Krystal, who won't read Joel Osteen's book because she hates to read (but I've been reading it and telling her about it), reminded me that according to his preaching, I should not let those thoughts interrupt my "favors" anyway! I was speechless . . . she was right!
(He says we should expect good things and we will get them, and to think negative is to lose.)
But what thrilled my soul more than this day of new freedom was that fact my daughter has been listening to me. Life is good again!
1/8/07: Thought I'd share this email that I got first thing this morning from a stranger who reads my website:
I'm glad you're better. Just to keep things in perspective, my mother
was diagnosed with breast cancer 9 years ago. On December 29, she
turned 97 years old. She still drives herself around town, and was the
grand marshal in their Christmas parade.
1/15/07: Well, if I had a webcam, I'd invite you all to my Piñata Party. I took myself off TPN about 2 weeks ago, but I still have three bags in the refrigerator. I'm going to strap them up and hang them from a tree branch and have a stress-relieving piñata party with them!! haha!
01/25/07: Yesterday I needed a few things from the store, so I drove to Walmart, with my two dogs in the bed of the truck, which means that I have to park way out in the "lower 40" in the parking lot.
I got out, locked the doors, petted the dogs, and walked all the way in to the store, shopped for 30 minutes. Not very remarkable, is it?
Except for the fact that I was skipping every other step, remembering that only three weeks ago, I had to be dropped off at the front door and get into a handicap buggy, too weak to walk very far.
I prayed to God my thanks all the way into the store and all the way back out to the truck.
Journal Entry, 3/22/07:
I promise you that I'm not looking for atta boys or congratulations or praise when I tell you about my feelings today.
I cannot forget my hopelessness, pain, nausea and misery during my horrible cancer ordeal. It's still fresh on my mind.
And because of that, my day was so incredible that I want to spend the night on my knees praying.
I am so grateful that I am crying as I write this.
Today was my first real day back at work, just like I used to do. Lying in that hospital, I thought it would never happen again. This day felt so surreal.
This morning I cooked breakfast for my brother (bacon, eggs, coffee) and then we went to work. He helped me water all the horses in the barn (since I don't have auto waterers up yet), and work with the strongest colts. Then he went to put up a gate and work on fences and I caught "Huckleberry" (the new gold cream champagne stud colt) to give him his halter lessons. While I was running my hands up and down his legs, picking up his feet, feeling the breeze underneath the big oak tree we were standing under, I realized that I have won life's lottery, being able to enjoy this incredible life outdoors. Gosh, I think I must be intoxicated by this incredible weather!
After I turned the mare and colt out, I went to saddle up my first horse on this, my first working riding day in nine months! I rode a young gelding first, and quickly realized that I completely blew the money I paid the young man to train him while I was recovering. When he brought him back to me this week, he was so thin his ribs are showing, so I thought he must have ridden him a lot. After only a moment on his back, I could tell that he didn't get ridden at all, as he is totally ignorant of the bit. I made the mistake of sending two young horses with this guy, since I knew I would not be physically able to break them, and not only did they come back completely untrained, but starved. Color me educated! Still, I put that out of my mind and enjoyed the ride. I couldn't ride him too long -- he's too weak, but felt it was important to ride him a little to stimulate his appetite.
Then I saddled the beautiful jet black Royal gelding. He gave me a fantastic ride -- huge back end, a little pacey, but when driven into the bit, flows and shakes his head. As I rode under a canopy of trees, I thought that the world had never looked so beautiful to me before. This will sound corny to someone who doesn't know what it's like to think your world is over, but I never even knew the meaning of the word beauty before.
After an exhilarating ride, I took him back to the barn, hosed him down and put him back in his stall. Then I saddled up "Copper", a lively young palomino who is almost white now, but has a golden coat starting to show from underneath his winter hair. I took him back out in the pasture and passed a huge oak tree that had three younger trees which had sprouted up through its limbs. I thought, immediately, of taking a picture to share this really neat and unusual formation. I took him through the mud, past the cattle, which scared him a bit, but I was proud of him as I felt him relax immediately when he saw they were harmless, and back up to the front, past the motorcycle trailer, which really gave him concern. I spent quite awhile on him there, making him walk up to the trailer, smell it, touch it, and then he went to trying to eat grass, so that lesson was over. When I put him up, it was time to feed again, which is always so enjoyable to me.
After the horses got through eating, I turned several out in the big pasture and they ran like wild mustangs for at least twenty minutes, which was so much fun to watch. Poor Gunsmoke, the stallion, was in agony, pacing his stall and wanting to be with them.
I am so blessed. I just keep wondering what I did to deserve these blessings, and hoping that I can truly earn them. Could it be possible for cancer to be a gift? Honestly, life is so much richer now. God is good.
If not for my research on the Internet, who knows where I
would be today? To my knowledge, there are only about 15 or 20 doctors in
the whole nation who know how to treat PMP and appendicael cancer properly, and
if misdiagnosed or misunderstood, the erroneous treatment can actually be a
death sentence. I'm not sure that I understand why I was fortunate enough
to wind up in the right place and others weren't, but I am grateful. As
evidence, here is an account from someone who suffered the wrong diagnosis and
December, 2006, from the PMP Cancer List:
I hate to write this post so near the holidays but I have finally
been able to sit down at my computer with a clear mind to write to
I first want to thank this group for being such a wonderful support
group and such a great help to my family over the past year and a
half. With your help and direction my mom received the best care
that we could have ever asked for and helped her put up a strong
fight against PMP.
That said, my mom lost her battle to PMP on Nov. 1st, 2006. For
those of you who don't know much about my mom's situation I will give
you the brief version. My mom was diagnosed with ovarian cancer in
Feb 2004. In April they were going to do a hysterectomy and remove
my mom's gallbladder but when they went in they found that an abdomen
full of tumors. Instead of doing the full surgery they only removed
her gall bladder. When they met with my parents afterward they said
that she didn't have ovarian cancer that they think she has colon
cancer and referred her to a different oncologist.
The new oncologist wanted to do a chemo regimen on my mom; however,
my mom denied the treatment. She knew they could not treat her since
they weren't even sure what kind of treatment she needed or what type
of cancer she had. She waited and over the next year her abdomen
began to grow. She finally went to a different oncologist and this
oncologist was willing to biopsy the tumor. When we got the biopsy
results in April of 2005 we were told my mom had PMP. In July 2005
my mom met w/Dr. Sugarbaker and she was scheduled for her MOAS.
On Aug 18th, 2006, Dr. Sugarbaker removed 42lbs of tumor from my
mom's abdomen. All of her path reports showed that she had the least
aggressive type of PMP (DPAMâ€¦I think). In Sept she was released
the hospital and in Nov. her blood test showed that she was cancer-
free. In March of 06, she had her 6mth CT-scan and it showed a hot
spot. Her gastro doc did an endoscope and it showed that she had 3
bleeding ulcers. They treated her for the ulcers and did a follow
up scope which came back clear. In July, my mom noticed a hard spot
in the spot where her appendix would have been. Her oncologist wrote
it off as scar tissue. In July, my mom's energy began to drop and
she was very tired. In August she had her 1-year tumor markers done
and it showed that my mom's levels were on a rise but not above 6, so
her oncologist just let it go. On Sept. 2nd my mom began to throw-
up every 24hrs after 5 days of getting sick she went to see her
oncologist. Her doc said that it was a stomach virus, gave my mom an
IV and sent her home. My mom threw up for the next 5 days and
finally made an appt with her gastro doc. Her gastro doc ran a CT-
scan and found that my mom's cancer was back and had caused a full
blockage at the base of her stomach.
On Sept 19th my mom was admitted to St. Joseph's in Atlanta. The
docs there were unsure of how best to treat my mom. They referred
her to Mercy Medical Ctr with Dr. Sardi and Dr. Gershain. The PMP
docs at Mercy were great but were at a loss at how to help my mom.
Their tests showed that my mom was in early stage liver failure and
they said that we should take her home on hospice. They told us that
she needed a liver transplant to live b/c on top of the PMP she also
had PSC (primary sclerosing cholangitis). When they gave us the news
I started doing research and we found a liver specialist at UPMC
(Univ. Pittsburgh Med Ctr) and Dr. Bartlett, a PMP specialist. My
mom was transferred UPMC. At UPMC they ran more tests and found that
my mom's PMP tumor had mutated and had taken on a more aggressive
form. It had penetrated my mom's duodenum just above the point where
the liver's main bile duct empties. It had sprayed mucus up into my
mom's liver and was causing her liver to fail. They told us that she
did not have PSC but the mucus in the liver made it appear as PSC on
tests. The docs at UPMC placed metal stints in my mom's liver and in
her duodenum. The doctors at UPMC said that my mom had a good
chance of beating her PMP again but she needed to go home eat, get
strong, undergo chemo for 6mths and after the 6mths she would come
back up to UPMC and have a gastrectomy w/Dr. Bartlett.
On October19th she was released from the hospital and finally had her
first meal after 43 days. Over the next two weeks she had started to
eat but she noticed that her abdomen was growing in size her home
health care nurse started to monitor the growth. On Oct. 30th, my
mom felt a sharp pain which she said was a cramp at 11am. At 3pm she
got up to go to the bathroom and passed out. My dad and my mom's
sister called 911 and rushed her to the hospital. At the hospital,
they said that her large intestines had burst and she needed
emergency surgery. The docs performed surgery on my mom and removed
most of her ascending colon. My mom made it through surgery but
never recovered her body went into septic shock and she died on Nov.
1st at 12:15am.
I apologize for giving such details of my mom's ordeal but I did it
for a reason. My reason is to help other PMP survivors. Throughout
my mom's journey I have learned one valuable lesson; get a second
opinion. Doctors do their best to help; however, most doctors don't
understand PMP and don't know how to treat it. Please keep searching
for a doctor who is willing to treat you and to take a look at your
situation. Don't give up after the first doctor gives you bad news;
keep looking for one that will treat you and knows about how best to
treat PMP. Please know that YOU are your best doctor. YOU need to
ask questions and get a medical diagnosis so you can research for
yourself what steps you should take. Doctors do their best but they
will not research the best doctor for your situation; that is up to
the patient and the patient's family. The doctors WILL give you
referrals but you have to do the leg work to find the facility and
the doctor that can treat you.
I know the PMP journey is long and extremely hard one to face but
just know you are not alone in your journey.
Thank you to all of you who helped my family through our journey.
I said a prayer for you today and know God must have heard
felt the answer in my heart, although He spoke no word!
I didn't ask for wealth or fame (I knew you wouldn't mind)
I asked him to send treasures of a far more lasting kind!
I asked that he'd be near you at the start of each new day
To grant you health and blessings and friends to share your way!
I asked for happiness for you in all the things great and small
was for His loving care I prayed for most of all.
Cloud 9 Walkers
P. O. Box 878
Hardin, Texas 77561-0878
(55 minutes east of Houston)
(Entire contents of this website copyrighted by Cloud 9 Walkers)