Initial posting: September 1, 2006
February 20, 2009
of Diagnosis – I was first told I had a pelvic mass,
cancer. In the ER the Gyn/Onc brought in thought I had ovarian
cancer. A colonoscopy was done a few days later and the colo/rectal
surgeon told my family I had colon cancer. Then when biopsy
results came back, they did not stain for colo/rectal and
these tests were run several times. So it went back to a GYN
cancer. My oncologist insisted that I go for a second opinion
and sent me to the Mayo Clinic; it was there that they diagnosed
me after explaining how unusual my case was. However if you
ask my GYN/Onc, colo/rectal surgeon and Oncologist they will
not give me a diagnosis even to this day and no prognosis.
I have heard more times then I care to how rare my presentation
is and where the tumor grew and what it has done. There is
no text book to go by.
of November 2006 the final diagnosis is Rectal Cancer, you
can read the story behind that below. It is so nice to know
what type of cancer it is.
2005: I missed my period, this has never happened,
other then when I was pregnant, could it be? I went to the
doctor, I was not pregnant. Watched my periods over the next
few months and they were not regular at all, I was never irregular.
So my GYN ordered an ultrasound done in November. All clear,
nothing unusual on my ultrasound, keep this in mind.
2006: Time for my regular pap smear. After tracking
my periods they seem to have gone back to normal. Results
of pap, normal. And even after physical exam, all was fine.
2006: I spent this month in Dallas, TX living in
a hotel. Training for my job took me there. I was constipated
during the trip; I took laxatives and thought nothing of it.
Being in a Hotel, not eating right etc……I am sure
that is why I was having bowel problems, right?
2006: Just about on April 1st I started leaking,
weird? I thought I had an incontinence problem. I let it go
for a week or so, and then I called my GYN office and got
in on 4/14/06. A pelvic was done and she saw the secretions
but could not tell where they were coming from. She referred
me to a GYN/Urologist, called them and they could not see
me until 5/5/2006(keep this date in mind). I had to wait 3
weeks, so I talked to a friend and he said to go see a urologist
and I did, I got in with them 4/20/2006, he did a pelvic saw
nothing, he does not think it is urine though, he wanted me
to sample from a kotex the fluid. I went to Las Vegas that
weekend for Jessica’s 21st Birthday and felt great and
had a blast; the leaking seemed to subside, Yea! I returned
and the leaking started back up again?! So I spent the next
week trying to get a sample, what a chore. I finally took
the sample in on May 3rd, 2006.
4, 2006: I was at a job site and I went to the bathroom
at 9am, and I passed a piece of something, I panicked, what
was it! I called my husband and my mom……I was
told to go to the ER ASAP. So I did. I would spend 12 hours
waiting to be seen. Since I was not in pain, I was at the
bottom of the list. But the leaking was really intense and
I soiled my clothes as I waiting, very embarrassing. Finally
we had a room! The ER doctor came in and did a pelvic; she
thought I had a tampon stuck in my vagina, Really? She called
in my GYN’s on call Doctor, Dr. T. He did a pelvic,
not a tampon, but perhaps an exploding fibroid? He wanted
to send me home and come into the office tomorrow for a biopsy.
Dr. Lew, my regular GYN was called, NO, do a CT on her. So
a CT was done, this was well after midnight and the results
would take hours. I sent Mark home to get rest. My mom was
up North and we were keeping her posted.
5: The CT had been done and I was attempting to sleep.
About 4:30am Dr. T. came quietly into my room, I was all alone.
He sat down beside me and held my hand and told me I had a
pelvic mass, it was cancer. At that moment I became a Cancer
Survivor. I did not cry…..I was not sure what to think,
maybe it was a dream? I was alone at the time and I just did
not know what to say. I was told I would be admitted for further
testing. I called my mother first at 4:30 am to tell her and
she said she would pack up and be down the mountain. I waited
until about 5:30am to call Mark and he came back down right
5th-19th – I spent these days in the hospital
having tests done. On May 14th 2006 I was taken into surgery
we thought to remove the tumor. The doctors went in and both
agreed it was too large. I was given an ileostomy to relieve
the rectal pressure and closed up. When I woke I asked if
they “got it all” and was dismayed to hear that
they left it all. I spent the next week healing and sent home
to face possible radiation and chemo.
30– I was told by my oncologist to get a second
opinion to pinpoint the type of cancer. Went to the Mayo clinic
and met with their top oncologist. He explained how rare and
unusual my case was. He spent some good time with us and came
to the conclusion that I had Primary Peritoneal Cancer –
Ovarian Based and Chemo of Carbo/Taxol should be used to shrink
the tumor before going to radiation.
2, 2006 – First Chemo Treatment of Carbo/Taxol.
The entire process took 5 hours.
14– My scalp hurt so bad I could barely sleep,
is this the beginning of losing my hair?
18, Father’s Day – My hair started coming
22 – Nancy shaved my hair off.
23 – Round #2 of Chemo.
14, 2006 – Round #3 of Chemo
17 - CT done to check size of the tumor
20 – Very dramatic day, I found out the tumor
has doubled in size. Radiation will begin ASAP.
24 – Started radiation, Day 1 of 28.
16, 2006 – Rectal spasms had increased and
were bad all weekend. They were uncontrollable. I called Dr.
Venk’s office, he is gone, and I see his partner Dr.
Lori Gordon. She is alarmed and admits me into the hospital
for a possible abscess.
17 – CT done while in the hospital. Good News!
The tumor is back to where it started and the abscess is on
the tumor, nothing can be done about that. I am released.
Thankful the radiation is working.
31– Last Day of Radiation. It has taken a toll
on my body. My bladder is very inflamed and it feels like
a bladder infection on steroids.
1, 2006 – Today I start healing and getting
strong to handle surgery the first week of October. I am starting
my healing at the Beach.
September 2006 –
I spent the month healing and getting ready for surgery. The
last few weeks before surgery I felt really good and was able
to work as much as I could to get ready for my 2 month absence.
2, 2006 – I checked into the hospital at 7am
for my 6pm Surgery. A long day of waiting for me. As the day
wore on and the time grew closer I was at peace with going
under again. I was told surgery ended at 10pm. The doctors
gave my family glowing remarks. All the tumor was removed,
margins were clear. The rectum was able to be resectioned
to lead the way for a reversal, a radical hysterectomy was
done and my vagina fistula was closed up. Now the healing
9– I was released from the hospital. Late that
night I began to throw-up and into the wee hours.
10 – I kept throwing up and was readmitted
to the hospital until the 13th. I was not on solids long enough
before being released.
26– Appointment with Oncologist to go over
final pathology report. My cancer has been listed as non-specific,
and unlikely to be colon cancer. Again I am told how rare
my case is and all my doctors have not seen a case like mine.
There were also nineteen lymph nodes removed and they all
came back negative, but he stated this could be from radiation,
but I will take it as good news.
Even though I unlikely have colon cancer per path reports,
my colo/rectal surgeon feels I have rectal cancer and my oncologist
wants to treat me with post chemo for colon cancer. He recommends
a new chemo for colo/rectal patients and states since there
is no baseline for my case, there is no prognosis of this
chemo. The side effects of this chemo are awful and I do not
want to put my body through it. There has to be other answers
out there? Someone has to know how to treat me?
8 – Appt with Dr. V, he wants to do a Lower
GI and Colonoscopy to see how my healing is coming along for
a reversal. If all is going well reversal could be in Mid
9– I meet with my oncologist again and tell
him I cannot go with his recommended treatment, what about
second opinions? He will work with Dr V. and try to get me
into UofA; my mom mentioned perhaps her brother can get me
call is made to Uncle John and he will look into Sloan Kettering
13 – I GOT IN!!!! Appointment at Sloan-Kettering
has been set up for November 28th at
11am. I will be meeting with Doctors that actually
see cases just like mine, I will not be told how rare I am,
17 – Colonoscopy was done today, originally
scheduled for December 4th, but I have been having rectal
pain and Dr. V wanted to check it out now. The enema prep
was extremely painful and brought me to tears, my rectal area
has not been used or worked in months, some mucus came out
and blood. I went into the test in tears from the pain. The
test was done and Mark was there when I was done, I was given
Versed and was out of it. Dr. V took some biopsies and said
I had some swelling and due to the radiation, healing was
taking longer and is causing the pain. But he does not see
anything “wrong”. Dr. V mentioned not to have
the Lower GI on Monday and a CT; he will call and take care
of the appt change.
18 – Walk Making Strides…..we
had fun today at the walk and lots of support came. I loved
how the wheelchair was decorated. I thank everyone for their
20– I went in for a Lower GI or CT Scan, was
not sure or how to prep since Dr. V wanted the Change on Friday
and they were closed all weekend. So I stopped eating Saturday
night. I went in and Dr. V forgot to call, they, radiology,
still wanted to do the test, Lower GI. Since I was not sure
what that test was, I asked them and almost was brought to
tears again. It is a Barium Enema, worse then my home prep
I did to prepare for Friday, I knew Dr. V would not want it,
I am still swollen. Called Dr. V’s office and sure enough
he apologized up and down for the error on his part, he wants
a CT Scan and that was scheduled for tomorrow. Whew! So my
mom and I went for breakfast instead!
November 21 –
CT Scan done
23– Hear from Dr. V about CT. CT looked good
except for one area, my left kidney ureter is in danger, and
there is scar tissue build up. I will need a stint put in.
27– I took our dog out for a walk this morning
before we left for NY, on the way back our little little doggie
pulled and I was caught off guard and the leash got away from
me, so I tried to run, my mind went but my legs did not and
I went down and my stomach took the fall. I was in shock;
I brushed off and thought all was ok. I got home and called
my mom, she told me to check my incision and stoma, so I hung
up and did so, called her back sobbing, my incision was bleeding
and my stoma was bleeding and VERY swollen, she came over
ASAP and called my doctor , she helped clean me up and we
went straight in. By the time we got there I was calmed down
and the bleeding had stopped. He examined me and said my stoma
was very bruised and swollen and the incision bleeding was
minimal and I was ok to fly.
Off to New York we went!
28– Sloane Kettering visit. Our hotel was in
the same office building as Sloane Kettering out patient center,
very convenient. What an incredible place, we were very impressed.
We met with Dr. Deborah Schrag, one of their gasternol oncologists.
She was great! Explained everything in great detail and gave
us her opinion. As she said everyone was “faked”
out early on by the CA125 reading which led us on the path
to a gyn cancer when all along it was a colo/rectal tumor.
Due to our family history of colo/rectal cancer she said I
do have a form of Hereditary nonpolyposis colorectal cancer
(HNPCC). She would also recommend the same chemo regimen that
Dr. Calvacant recommended, she said it is the mop up that
needs to be done to be sure no cancer cells are left behind.
The Chemo of Oxaliplatin/5FU is not as bad as it was explained
to me in Arizona. In fact she said on a scale of 1-10, the
Carbo/Taxol I did in June/July is a 7 and this is a 5. Her
explanation gave me comfort and made me rethink taking Chemo.
The entire visit was so great, just to hear some confirmation
of what kind of cancer I really have was very comforting and
makes so much more sense know after her explanation of HNPCC(if
you want more information about this, look on the web). We
all agreed the trip was well worth it, just for that few hours
at Sloane Kettering.
spent the rest of the week having some fun in New York; look
at the photo’s page for
4 – I returned to work, first day back since
September 30th. I put in 4 hours and it felt great!
5 – I woke up this morning and I was very light
headed, something was not right. I called Dr. Calvacant and
got in. I had blood drawn to check my counts. They did some
stress tests and my blood pressure decreased significantly
when I stood up. They gave me a liter of fluids and sent me
6 – I woke up this morning and could not get
out of bed; I was so dizzy, something is really wrong! My
mom called the doctor and they told me to get to the ER. Arrived
to the ER and got a room when we arrived, WOW! They put a
PICC line in me to draw fluids and use for IV, my veins have
been abused. I was sent up to a regular room and admitted
into the hospital. My counts were low and that was causing
the dizziness. That evening I received 2 units of blood. I
was observed for a few days to be monitored. IN the meantime
my rectal pain flared up fierce! And some blood was coming
out, was I losing blood from the rectum to cause my counts
to be low? Saturday my colo/rectal doctor did a scope, my
rectum is bleeding but not significantly, I am still healing
and there is a lot of swelling still at the incision site,
directly relate to the radiation, the tissue is taking a long
time to heal, maybe 3-4 months. Everything stabilized and
I was sent home Monday.
in and seeing doctors everyday we discussed the NY visit and
all my doctors received a copy of the visit. I told them I
was leaning towards doing Chemo now. If so a port would need
to be inserted which is done under general anesthia (GA),
but I was to unstable to do it this trip to the hospital will
have to be done outpatient.
also saw the urologist about my left ureter while in the hospital,
that will also require GA to be inserted, but again I was
to unstable to go under to do it in the hospital.
13 – Back to work again…..let’s
try this again!
15 – I meet with a General Surgeon about the
placement of the port for the Chemo. It can be done any Monday
or Wednesday, I just need to call and make an appt.
have second thoughts about Chemo. Can my body handle it? Do
I want to go through it again? Do I want to risk my life?
I am reading and reading about survival stories, those that
do Chemo and those that don’t, it can come back either
way and some it never comes back. Then there is my dad, he
had colo/rectal when he was 40, refused Chemo and is still
here today some 30 years later…….can I be as blessed?
I schedule an appointment with my oncologist for 12/27/06
to discuss….I need to pray and read before then.
20– I received some incredible books, highly
recommend them! Beating Cancer With Nutrition - Revised
[Paperback] by Quillin, Patrick and Cancer - Step
Outside the Box [Paperback] by Bollinger, Ty, M(This
one is AWESOME and very eye opening)
27– Met with Dr. Calvacant, the oncologist,
to discuss my treatment. The first thing he said to me was
“Is your port in and ready to start Chemo?” Well
“No” I said, I am reconsidering doing Chemo. He
said “What else can I explain to you, I thought you
understood the treatment plan?” I told him I understood,
I just was not sure if I wanted to do the extra Chemo and
I am leaning towards not doing anymore Chemo. I want my body
to heal and use alternative methods to prevent the Chemo from
coming back. Dr. C. said all of his patients my age do the
Chemo after surgery, well maybe I will be his first not to.
Dr. C told me that if the cancer came back it would be more
then likely incurable. What if I do the Chemo and it comes
back will it still be incurable, well yes it will. Hmmmmmmmmm
Dr. C wants to see me in 3 weeks to see if I have changed
my mind, I am not sure I will.
28– I met with the urologist about getting
my Kidney Stent put in. This will be done on an outpatient
basis on Friday January 12th, 2007. It does require a general;
I will check in the morning and go home that night.
10, 2007 – I met with a Naturopath doctor who
himself had cancer 9 years ago. Gave me an eating plan I am
reviewing and some supplements. He wants me to do aggressive
IV supplements like Vit C and something else. I need to research
that more and I requested to talk to some of his patients.
It would be 4 times a week 2 hours a day for 6 weeks. The
eating plan and supplements are logical, not sure about the
IV’s. Will do some more research.
12 – The ureter stent is placed under GA. In
and out…..I tolerated the procedure fairly well and
everything went as expected. Felt some bladder pressure over
the weekend, nothing too bad. He does not want to see for
2 months, unless I feel pain or blood in the urine.
17 – My oncologist met with me. We went over
the blood work and it is AWESOME my CEA is 1.2, which 3 is
the baseline, so that was awesome and CA-125 is still single
digits, anything under 35 is normal. But my hemoglobin is
still hovering low, 11.2. A Dr. C still wants me to do Chemo
and I am still saying no.
28-30- I was having some difficulties keeping my
ostomy wafers to stay, not sure what was going on. Twice Sunday
night it blew and changing them in the wee hours was not fun.
Then Monday afternoon one started leaking, rushed home changes
and 3 hours later again. Twice again through Monday night
into the wee hours, I was one tired gal! Called into work
Tuesday, too exhausted to go in. We called in my home healthcare
nurse and she came over changed a wafer for me again. And
you guessed it 3 hours later BAM, it broke again. By this
time not only was I exhausted, frustrated, but my skin around
my stoma was on fire and I was I n pain. Mark and my mom were
trying to help me and they started calling around. The ostomy
nurse with my home healthcare was out on Cancer leave herself.
Called my colorectal surgeon and he told me to go to the ER.
So on January 30th here I sit in the ER again, I got through
pretty quickly and they had no clue what to do with me, no
one there knew anything about ostomy, it is amazing! So I
was given morphine for the pain and laid in bed with no ostomy
dressing on, yup nothing, that was a fun 24 hours, NOT! I
was admitted and everyone thought I had a disease, no I Just
needed an ostomy nurse. Craziest thing ever to be admitted
just to get help that could have been handled outpatient.
So Wednesday morning, FINALLY an ostomy nurse came and first
off told me to complain about what I had to go through, this
should not have happened. There is an extreme shortage of
ostomy nurses and to be seen you have to be admitted, all
the outpatient clinics are not working right now. So I spent
two lovely days in the hospital, and she fixed me up and put
me in a new system, not ideal, but it is holding strong. I
had to stay until the next day Thursday, to be seen again
and make sure all was holding well. Then $8,000 later I was
released, well that is what the insurance was charged, for
something that should have been handled out patient.
3 – Boarded a plane to Maryland to participate
in the Penguin Pace 5K race and I had an AWESOME weekend,
more story and pictures are here
on my web page.
19 – Today I had a scope done of the rectum.
Prep was not as bad or should I say painful as it has been
in the past, a sure sign of healing, in my opinion. Once again
I remember being wheeled into the room for the procedure and
do not remember anything after, ahhhhhhh the joys of good
drugs! My mom was there waiting for me after, Dr. Venk said
it looked good, I believe he stopped short of saying I am
ready. He wants to see the results of tomorrows CT scan, yes
one more test tomorrow. At least I got to eat dinner tonight,
fasted since last night, and then tomorrow fasting again for
20 – I had my CT Scan today at noon, I think
this is my 5th or 6th since I was DX, so I knew the routine.
Nothing to eat 4 hours prior, go in and then drink this yummy
stuff, NOT! Then they stick an IV in me and go to the “Donut
Machine”. Then the iodine gets injected and I get the
warm feeling….but wait something weird happened, my
lip went numb and it looked like I was punched in the lip.
So guess what, I am now officially allergic to Iodine and
will need to be premedicated for further CTScans.
21 – First results in from my Oncologist came
in at 8pm, geez what hours they keep!
And he just gave me the all clear. Ok Ok Ok I am only 4+ months
out from my surgery, but just to here the all clear was a
blessing. He did say though that my Thymus Gland is a little
enlarged and he wants to check it again in 2 months. I looked
it up and not sure why it would be enlarged, but he told me
it had nothing to do with cancer?! So I will believe him.
Now I just need to get the all clear from my colorectal surgeon
that my reversal can be done and then I will be doing the
BIGGER HAPPY DANCE!
26– Dr Venk called me, colorectal surgeon,
today and he wants me to have a PetScan. He saw some scar
tissue build-upon the CT and wants to be sure there is no
cancer in it. What is a Petscan?! I have had two, this will
be my third. The machine is very similar to a MRI machine.
I go in at 8:30am, nothing to eat or drink 4 hours prior.
They inject me with radioactive glucose, now doesn’t
that sound wonderful. I have to sit in a dark room for one
hour to let the stuff go through me. Then they make me go
pee in a special bathroom marked radioactive, YIKES! Then
I go in the “Tube” for the test. My body illuminates
and a special color, not sure which one, shows if there is
any cancer. So when I had it prior to surgery my tumor was
glowing and no other part of my body. I should have these
test results by Monday or Tuesday.
a side note, I have decided to go to my final IRS training
so I can become a full fledged IRS Agent, I missed the training
in September, I was pre-occupied? The training will be in
Portland Oregon, never been there to stay. I am excited and
looking forward to it. I will there March 12th-30th and I
hope to see some family while I am there. My ostomy reversal
if approved will be in April.
2 -Petscan is done.
I also here from Dr. V today. Everything looks good, we can
schedule the reversal. I already made commitment to go to
Portland for work, my final training! So I schedule my reversal
for when I return in April.
9 – Appointment with Dr. Calvacant, my oncologist.
The Petscan came back good, no cancer cells. But he is curious,
my Thymus Gland is enlarged?! He was not too concerned, wants
to do a repeat Scan in a few months.
12– I am off to Portland for 3 weeks. I am
a little nervous….being gone so long and away from my
doctors. Iam feeling pretty good, I will do fine!
11 – I check into the hospital at 7am for my
4pm surgery. Surgery goes as planned, everything went well.
I was up and walking tonight and felt pretty good.
13 – At midnight I feel little bubbles coming
out, Yea!!!! Gas has finally come, things are working! I can
finally have food!
15– Things seem to be working well, I had two
meals and I seemed to have tolerated them well. I am sent
home. Wow, can it be this easy? At home I do not have an appetite,
my mom brought me a Jamba Juice and I nurse that the rest
of the afternoon.
16 – I did not sleep at all last night…….and
to top it off, one of the times I stumbled into the bathroom
there was a scorpion, YIKES!!! MARK!!!!!!!!!!!! Come here!
All day I just do not feel right, lack of sleep? By early
evening I call my mom, something is not right, she comes over
and agrees. I am in pain and my stomach is distended. The
decision is made; it is time to go to the ER!
We are taken back right away, my pain level was a 10 when
we got there and they got me going on an IV and pain meds,
I was in severe pain. X-rays and scans were done. I was evaluated
by Dr. V.; I need emergency surgery and was marked for a colostomy
on my left side. It is the 17th and I am in tears being wheeled
into surgery, Dr. V comes and pulls me out, no surgery, there
are other issues to deal with.
happened is when the reversal was done they go into the site
where the ostomy was, else is looked at. Well my CT was done
the end of February, 7 weeks prior. Based on the scan done
today a mass had formed in my pelvic region. My family was
told that the cancer was back and everyone was in shock! A
biopsy was done and 3 LONG days later we were told it was
not cancer. My scar tissue was growing like cancer, bizarre!
But THANK YOU LORD! So now what?
kidneys were shutting down - the scar tissue was cutting it
23– Colonoscopy was done to relieve the pressure
in my bowels/stomach and then sent back to my room to recover.
A few hours later the urologist came in and said he was doing
the kidney stents that afternoon, had to be done! So I go
under GA to have that done. Two surgeries in one day!
27– At this point I have not eaten anything
since April 16th, 2007. I am on what is called TPN, it is
IV nutrition. Being on this requires your glucose be checked
every 4 hours and if out of line an insulin shot had to be
given. Dr. V comes to me and tells me my choices. Alan and
my brother were in the room with me. I can go home on TPN,
I would have to be hooked up to an IV for 12 hours and the
other 12 hours I could move around, but during this time nothing
by mouth! Give it 2-3 months to see if my bowels can function
and there is no guarantee. Or I can have a permanent colostomy
with the removal of my J-Pouch and rectum.
I made the decision to receive a colostomy. The TPN situation
just did not seem like a good option. My Dad has spent 28
years with an ostomy and lives one of the fullest lives of
anyone I know, I can do this! I had to make this decision
and I know not everyone was on board with me, but I moved
1– I went into surgery that evening, it was
a tough day for me emotionally. I made this decision but still
I had such high hopes for my reversal!
Surgery did not go well….my pelvis was frozen; all my
surgeon could do was give me a colostomy. My pelvic area was
fused together by scar tissue and no scar tissue could be
removed or the rectum/anus and j-pouch.
surgery took more out of me then all of the others. Perhaps
it was the fact that it was my fourth surgery in 2 weeks,
the emotional setback of having the reversal fail, wondering
if I made the right decision, all of it rolled up made the
healing process slow down.
I stayed in the hospital for 2 weeks after recovering. The
ostomy was working well! Emotionally I was trying to cope,
it was very hard!
15 – I went home! It was strange going home,
but felt good! And now the healing could begin!
21 – I went to the mountains and soaked in
the fresh mountains air. I felt 100% better after that trip!
25-May 28– San Diego! We had a perfect room
and I could watch the ocean all day! I spent one day on the
beach under an umbrella, my neck got red, whoops! What a fantastic
weekend! Myself, mom, Jessica (her friend Stacy and Jen),
Tom and Elva! Saw some ole running friends and my cousin Christopher!
31– I met with my colo/rectal surgeon. He talked
more about my surgery and my frozen pelvis. He feels the scar
tissue will stop growing and my pelvic area will settle down.
However when a CT is done they will refer to it as a pelvic
mass and look like cancer on the scan. He also said that I
will need stents replaced every 3-4 months for the rest of
my life and my bladder is compromised and cannot hold as much.
Other then that I looked great and he released me back to
I also see Dr. Calvacant today and he orders a Petscan.
14 – Appointment with urologist. He confirmed
what Dr. V said, I will need stents replaced for the rest
of my life and my bladder is compromised because of scar tissue.
He mentioned that a German doctor designed a stent that is
metal and will last a year, it was just approved in the US,
he has not done one yet I would be one of his first. As soon
as he is able to do this type he will let me know. In the
mean time we set up surgery for July 16th.
Later this day I have a Petscan.
20– Dr. Calvacant calls me; my scan was CLEAR,
no sign of cancer!!!! And also the thymus gland is normal!
10– Hope and Healing support group, this group
is all of Dr. Comerci’s patients; he is the Gyn/Onc.
And we all were upset he is moving back to PA, sigh! I am
fortunate because I have so many other doctors and my primary
cancer is not GYN, so they say. I will miss him!
12– the heat is really getting to me, I just
feel real fatigued. I did not workout all week, too tired
by day's end.
Yesterday I went and had blood drawn for surgery on Monday
and normal cancer screening for Captain Jack.
On my way to see Dr. Venkatesh today I picked up the results,
Captain Jack (AKA Dr. Calvacant Oncologist) wrote a note that
the results were great! And they were, tumor markers way below
normal! My hemoglobin is at bit low at 10.8 and 11 is normal.
I just can’t seem to get that up; I need to work on
So on to Dr. Venkatesh, he looked at my roadmap on my stomach
and said all is healing well, pushed around the tum tum, looks
great. He made it clear to me that my pelvic area needs to
be watched closely with CT Scans etc and if Captain Jack does
not order them then he will. We also discussed my pain/discomfort
and the fact I need to take Percocet’s everyday, I actually
break them in half, but over the counter stuff does not cut
it. He knows that I need relief, he was inside of me and knows
how messed up it is and how much discomfort I am in on adaily
basis. But he says I am too young to be on percocets all the
time, he wants to send me to a pain management specialist
and perhaps explore the option of spinal injections. His office
will set up an appointment for me. Dr. V does not want to
see me back until December and at that time he will do a scope
of my ostomy, wow 5 months!
People always tell me I look good and do not look like I am
in pain, I have always had a high threshold of tolerance,
I had my kids with no spinal, I was more afraid of the needle
then I was of the pain. My “New Normal” involves
daily discomfort and I am learning to live with it and push
on, I won’t let it stop me. Dr. V knows I need narcotics
he knows I am in discomfort and I am glad he is concerned
about it. So on the days I am “feeling good” my
starting point is the normal discomfort that I have now and
how much more discomfort I am in. Some days after work or
doing errands etc I do tire and just crash at night and many
times I need a full percocet, it is just my “new normal”.
But would never consider not working, I love my job and it
keeps me going and I love the people I work with! I am looking
forward to working with a pain specialist and trying to find
some solutions that will work long term.
16– Today I am having my Kidney stents replaced;
it is done on an outpatient basis. Went into the hospital
at 7am for my 9am surgery with Dr. Patel. I discussed the
fact with him that the past week I have had blood clots and
blood in my urine, he said that is a sign that the stents
need to be replaced, so a good thing we are doing them today.
So it seems mine last just about 3 months since they were
done on April 23rd last. Procedure was done and I was home
shortly after 11am. I was a bit uncomfortable tonight, but
nothing I could not handle and my buddy percocet could not
take care of.
August 18 – I have heard from several
people “Why have you not updated your web page?”
Well I guess it is a good thing that life is returning to
normal right? I only have my blood drawn every 2 months now,
so I will not have that done again until mid-September and
that does make me nervous but I try not to think about it.
did have a really good appointment with a Pain Management
doctor on the 7th of August, Dr. McCauley. My Colo/rectal
(Dr. V) surgeon sent me to him. Everyone one is in agreement
that I have pain/discomfort and I do need something for that
but Dr. V thought I was too young to be on percocet everyday
and thought perhaps a pain pump or the like was necessary.
At this appointment I gave him my full history and he too
agreed that I did need something for pain. At this point he
did not recommend a pain pump or spinal injections, he said
the rectal area is a different location and he is not sure
they would work, he said definitely not a pump and he would
try some type of spinal injection if I wanted and see if it
worked. He said if percocet is working then to stick with
that. I take 3-4 percocets a day and usually I cut them in
half and I can full function on that dose and it relives the
pain. He gave me something called Kadian to try, it is a sustained
time release and you only need 1-2 a day, they are morphine
based. I did not have much relief with them; I still think
my ostomy can’t handle time release. So I am staying
with the percocet.
about sums it all up for now, when I get my blood work done
in September I will post again, and I see my oncologist on
September 24th, 2007.
2h – On Tuesday 9/18 I had my blood drawn for
the first time in 2 months. I keep a 99.9% positive attitude
during the times between blood tests, then the day comes and
the wait. That night I met with a small group and we gave
ourselves affirmations and mine was “I am Whole, Perfect
and Complete”, so I sang this affirmation until my Oncologist
came into the room this afternoon.
opened the door and I smiled and so did I, I just knew what
he was going to say, all looks good!
All blood tests were normal and all is clear! So good he does
not want to see me until January 2008, WOW!!!! I do need to
have a blood test done in 2 months and he wanted a scan done
4 months after my last one so that means in October I will
have a full body scan.
pain is under control and I have been feeling great! I am
walking and biking as much as I can. I am SO Blessed!
16 – Yesterday I had my kidney stents replaced
and all went well. I was in recovery a bit longer, just wanted
to sleep I guess. My Brother Tom took me to the surgery and
waited for me, what a sweetie. The doctor said they looked
good and he does want them replaced in 3 months again. So
all went very routinely.
I have been quiet about an aspect of my life; I guess it is
not something that needs to be written in the headlines. I
moved out of the house in the beginning of August and a few
weeks ago Mark and I signed divorce papers. Not something
I expected or wanted to happen, but it seems it was what had
to be done. We are remaining friends during it all and working
together on the details, if anyone has any questions just
I am excited about the future and the long life I will be
23 – Petscan done and results were NEGATIVE!!!
November 12 – Blood draw – result
were great! All tumor markers were below normal; this is a
very good thing, slight anemia.
November 15 – Ultrasound done to be
sure I was not developing clots in my legs, why you ask?!
No clots but I now have stage one Lymphedema. What is this,
you can read more about it on this
website, it is very common with cancer patients who have
lymph nodes removed. I had 19 removed so my lymphatic system
was very compromised and a pooling of fluids was taking place
in my legs, especially at the ankles. I am extremely blessed
to have a sister-in-law who is a Lymphedema therapist and
she helped me get all set-up with the equipment. I must now
wear compression hose when flying and when the swelling gets
bad I have to wrap my legs with ace bandages. I have a self
massage routine to do every night and it is strongly recommended
that I get massages every week by a therapist that specializes
in lymphatic massage, oh darn! :-) Stage one means it is controllable
and it can be reversed, once you get to stage 2+ you may never
be able to reverse the swelling. Just one more thing to add
to my war chest of challenges I have. One thing that helps
control it is walking, so training for the Half Marathon will
be great! http://www.lymphnet.org/
November 17 – Making strides Cancer
Walk – what a BEAUTIFUL day and we had a great team!
I believe we had about 30 out walking……no wheel
chair this year!
8 – Prep went ok for testing today, not pleasant!
Colonoscopy through the stoma and a scope in the rectum, ALL
Everything looked great and Dr. Venkatesh does not want to
see me for a year, WOW