Thanks Linda for being there
with your Totally Hip Support Group.
Right now I am in a state of turmoil what with my right hip
and leg feeling so good one day and so bad the next day. I look at & feel
my incision area daily for any sign of infection. Actually my hip is secondary
to other medical problems I am facing right now. A yearly cat scan last
October showed a small soft tissue mass in the area of my colon where I was
treated for Stage 1 cancer about two years ago. Exploratory surgery was
scheduled for last month but called off when my Heart Doctor said my Treadmill
test showed some concern. An angiogram showed one blocked artery and one week
later I went through angioplasty with a stint inserted into my artery. I
stayed in the hospital overnight and my bill came to $23,000 and that does not
include my doctor. My wife and her friend had a trip planned to Hong Kong and
Korea from March 28 to April 16 so my surgery was postponed to April 26. I had
a second Cat Scan in January which showed the mass got bigger and now I am
scheduled for a third Scan Saturday Apr 15. Meanwhile my wife returned Sunday
Apr 9. As you will see in my upcoming adventures my wife has been through so
much and I know I would not have made it to now without her.
HOLLY MOLEY Linda - I hope you will bear with me as I feel
I need to get this off my chest. I guess I am a SURVIVOR. My story begins.
First in spite of what I have been through my doctors and
the medical staff have all been the best.
I can't say the same for the financial staff - maybe it is because I am in
Finance myself. I am extremely lucky since my main nurses at Queen's Hospital
in Honolulu are my daughter's best friends. Since they come from Wisconsin we
are like their family away from home. I'm their away from home Pops.
My medical problems leading up to my THR began after I lost
a lot of weight in early 1981 and started to train to do the Honolulu Marathon
which is held in December. I went on the high protein water diet and my weight
drop from about 300 lbs to 185 lbs. When I first started to train I couldn't
walk a block without stopping to take a break. I did a little bit more each
day and in March started to train with the Honolulu Marathon Clinic. I was 45
years old at this time. I soon was able to run at least 6 miles a day. The
December 1981 Honolulu Marathon was the first of some 40 marathons I have
About two years after losing all the weight and completing
in races and marathons I developed a severe pain down my right leg and butt
while on tour as a Department of the Army Civilian in Korea. It was a pinched
nerve in my back which the Army Hospital in Seoul and acupuncture couldn't
help. I continued to run my six miles each day in spite of the pain and after
about one month was pain free. I was OK for a few years and then after the
Honolulu Marathon in 1987 I went out for a run about a month later and barely
could make it back home. I had gained some weight and did not train too good
for the run. I went to Straub Clinic & Hospital and the Sports Medicine
Orthopedic Doctor diagnosed pinched nerve and after cortisone injections and
medication did not help told me to lose some 50 lbs before undergoing spinal
cord surgery. I suffered for some 4 years,
had another tour in Korea, gained some additional 50 lbs and upon my return to
Honolulu in 1992 visited the Straub Neurosurgeon and told him weight and all I
was ready for the surgery. An attempt for an MRI of my back caused me to panic
and want out of the place pronto. The laminectomy of my spinal cord was done
The surgery and recovery went well and I was pain free for
about a year. During this time I retired from Federal Civilian Service Jan 93,
worked with H & R Block during the tax season, and was hired (57 years of
age) as an Accountant by the City & County of Honolulu Sep 93. However
towards the end of the tax season the pain down my leg came back and my Doctor
at Honolulu Medical Group prescribed VOLTAREN. He did say
it may cause bleeding. I was soon scheduled for a physical before starting the
optifast diet program. The morning of the physical (Wednesday) I noticed
something was wrong when I went to the bathroom. I did not tell my family
doctor (also the optifast Doctor) about my stool being black, because I was
looking forward to starting the diet fast. By Friday morning the bleeding was
so bad I could hardly move. My wife dragged me back to our family doctor who
put me right into the hospital for three blood transfusions over the weekend.
Of course Optifast at this time was out and a scope down my
stomach revealed bleeding ulcers. I was put on medication and after about 6
months, another scope, and begging and crying to my family doctor, I was
finally allowed to go into Optifast early 1994. I lost over 80 lbs and in
general I was feeling pretty good except the pain down my leg kept getting
worse. Since I was no longer going to Straub I asked my nurse friends for a
good Neurosurgeon at Queen's Medical Center. I then went made an appointment
to see Dr. Taniguchi and he finally consented to see me after trying for 20-30
minutes to convince me to go to another doctor since he doesn't like to deal
with another doctor's scar tissue. My first surgeon was now retired. I went to
the Queen's MRI unit and they calmly showed me how to fit into the MRI I went
through MRIs of the knee and the back. Too bad my hip was left out. The MRIs
showed something wrong again with my back. After additional tests and getting
the ok from my Family/Diet Doctor back surgery was performed Aug 94. After
surgery I went for Physical Therapy and things were going OK for
about a month. My Physical Therapist was having problems with movement of my
right hip. As I was running out of the prescribed 10 PT sessions I was having
more and more trouble walking. My Physical Therapist suggested I see an
Orthopedic Doctor. I went to see Dr. Taniguchi and after checking out my leg
told me to see Dr Pavel at Orthopedic Specialties on the 6th floor. I pretty
much realized at this time I was in for Total Hip Replacement Surgery. I went
to Queen's and got some info on THR. Sure enough Dr Pavel after X-rays said my
hip needed to be replaced. We had it done Dec 19, 1994. What a Christmas
present. I went back to work 3 weeks after surgery. I used a Walker for two
weeks and then a cane for a short period of time.
I was feeling great until late Sep 97. We walked the
Honolulu Marathon Dec 95 and Dec 96. For the Dec 97 Marathon we joined the
Leukemia Society Team-in-Training program. In return for raising money for the
Leukemia Society they trained us to run or walk the next Honolulu Marathon. We
had about 3,000 Team-in-Training people join us from all over the country to
do the Dec 97 Honolulu Marathon. Meanwhile in the midst of my fund
raising/training I developed what I thought was a stomach flu. It started
Tuesday/Wednesday and I took off Thursday morning to train and raise money. I
went to Queens to collect money from my nurse friends and really wanted to
stay at the hospital. I barely got through Friday and finally went to see my
Family Doctor on Saturday. By this time I was feeling better and my fever went
down to 101. I was told to come back on Monday to see another doctor who
scheduled a CAT Scan the next day at Queen's. After the Cat Scan the
Radiologist gave me the bad news and
called for the doctor who prescribed the test. When he came he admitted me
into the Hospital immediately. I was lucky my daughter was still home and she
was able to get my personal stuff from my office and my car from the parking
lot. Tuesday afternoon I meet Dr Susan Steinemann for the first time when she
visited me at the Hospital. It seems the Cat Scan showed something wrong with
the area around my appendix. She scheduled exploratory surgery for the next
day. However early Wednesday morning I was told surgery was postponed. Dr
Steinemann I guess wanted me to stabilize and mentioned surgery in about 8
weeks. I told her no way since I wanted to do the Honolulu Marathon for the
people who donated some $2,000 and my 7 year old team-mate. I did complete the
Marathon in 11 1/2 hours and was firmly convinced I wanted the surgery as soon
as possible. Surgery was performed Dec 19, 1997.
As soon as I woke up in the recovery room I knew it was not
routine surgery. After about 10 hours they finally let me go to my room. The
incision area went right of my navel for about 8 inches. About 2-3 days the
incision got red and infection was developing. Dr. Steinemann pumped some
morphine into my IV and in my room opened my incision and for about 5-6 weeks
was allowed to heal from inside out. The gauze and dressing had to be changed
3 times a day. In the morning before work I went to Dr. Steinemann office, in
the afternoon a nurse friend came by before starting her shift at 7PM, and
then I waited for my daughter to come home from work. Believe it or not the
worst part of the surgery came about 2 days after surgery when the pathologist
report showed 1st stage cancer in my colon. I visited cancer Dr. Rajdev after
the surgery and we started chemotherapy earl Feb 98 and it lasted 6 months
(one week of chemo and three weeks off). The chemo had a terrible effect on me
-fatigue, skin that caused blisters on my feet and cuts that wouldn't heal, a
bad taste in my mouth, etc. I was in total misery. Instead of losing weight
in, spite of food tasting so bad, I gained 50 lbs. I could hardly move. In the
midst of this my family and I were going through a stressful period - On 1
April I got a pink slip from the City & County of Honolulu, my youngest
daughter was to be married May 31, we had family coming from Korea, Indiana,
Connecticut, Philadelphia and my sister and family from California. I was to
take two weeks leave and on Sunday a week
before the wedding I had a real bad stressful day and in the afternoon I fell
down in my carport and broke my right shoulder.
It was a clean break and after being treated at Queen's
Emergency Room I went home. By this time Dr Pavel was semi-retired and so I
was able to be seen by his associate, Dr. Kane. Little did I know that this
was the start of Dr Kane & I going through a lot together. Surgery was not
required on my shoulder. I changed my annual leave to sick leave and tried to
enjoy my family being here and my daughter's wedding. Soon after the wedding I
got the word that the City cancelled the reduction in force. After my chemo
was over I visited my Family/Diet Doctor (Dr.McEwan) and in spite of telling
me no-more Optifast he brought it up. At this time I weighed almost 300 lbs
and could hardly move. We started Optifast and I keep on the shakes for 16
weeks (4 weeks extra), joined the Gym and did a lot of walking. I lost over 80
lbs and started to feel much better. But starting about Nov 98 my right hip
started to be painful. The pain got worse as I lost more
and more weight.
In Dec 98 I saw Dr Pavel for my annual check-up. X-rays
showed deterioration of my hip in the ball and cup area and a revision was
recommended. I did the Dec 98 Honolulu Marathon
and felt pretty good doing it. However after the Marathon the pain got worse
and I went to see Dr Kane who by now was the main Doctor in the Group doing
Joint Replacement Surgery. His calendar was full and I would have to wait
almost 3 months for the revision. I got off the Optifast Fast and instead of 8
weeks refeed, did it in one week, and instead of 2 months full food was giving
the OK for one month. With Dr Pavel's help surgery was moved up to Saturday
The revision surgery went well and I was fitted for a brace
on Monday and it arrived from Florida Tuesday afternoon. I was informed that
dislocations could happen more after a revision than a THR. It seems like
things changed since my THR (Dec 94) and so on Wednesday I was to be moved to
Rehab Hospital. This was a major disaster from the get go. First I was spoiled
with my care at Queen's. Then the Handi-van finally shows up (I was to be
moved in the morning and they arrived about 2 PM) and my nurse said their
wheel chair was not safe for me. Instead of taking me down in the 100 year old
wooden Queens wheel chair they had to go back to the van for a stretcher. When
I finally got to Rehab Hospital I missed PT/ OT for the whole day. I asked
them for a chair so I could get out of bed. The could not find one for over 24
hours and then the one they gave me had a very loose arm. It seemed the PT and
OT at Queen's was on a parr with Rehab. The difference in rates was very
small. What with the bad service and my room-mate being shot in the back over
cock fighting (against the law in Hawaii) and having a scar going around his
neck I really went into a complete state of panic. I thought they were going
to come back to finish the job and get me too. After much pleading they let me
out of Rehab Hospital a few days early on Friday afternoon.
Part of the deal was I will do PT at the Rehab facility at
Queen's. PT was too good to be true. After 7 weeks I was getting stronger
everyday. I was reaching 4 miles an hour on the treadmill and doing 30-40
minutes on the exercise bike. I was also doing some long distance walking.
Probably in looking back I was overdoing it. Seven weeks post-0p on Friday
evening at home I sat in a chair in the Living-room to watch TV. I don't know
why, but when I got up I heard a pop sound in my hip. I tried to walk and
after a couple of minutes another pop and it was back in place. It happened a
second time the following Monday while in PT when doing my last exercise I was
on my stomach and it went out of place when I was getting up. It quickly went
back in place and I saw Dr Pavel that afternoon. He told me I would have to be
careful for the next 11-12 weeks. The rest of the week went uneventful and
Sunday was the big day my wife and I had planned for a long time to take a
trip to Hong Kong & Korea.
Well the bubble burst Sunday morning about 3AM while I was
sleeping. I got up with a start and
apparently made some movement when I got up. I just don't know what I did but
my hip dislocated and stayed that way. I woke up my wife and with the use of
the walker got into the van and my wife took me to the Queen's Emergency Room.
After an X-Ray revealed the hip dislocation the Emergency Room MD got the
on-call Resident Orthopedic Doctor to the Emergency Room. A few hours already
went by and my daughters came to the Emergency Room. I told my wife I will be
OK and she should go home and get ready to take off for Seoul-Hong Kong. The
Resident put me under and put my hip back into place. I left the Emergency
Room about 10AM with a material brace that went from my ankle to my thigh.
Stupid me I left the next day at 8.30AM with my two braces to meet my wife in
Hong Kong. It was a tiring day since with Korean Air to fly from Honolulu to
Seoul, stay in transit for 3 hours, and then fly to Hong Kong. By the time I
got to the hotel it was 11PM Tuesday night. My wife told me the yearly
International Leather Goods show in Hong Kong sucked and they had a better
trade show in mainland China.
Stupid me again I said OK lets go. The City in China is
about 150 miles from Hong Kong and we were
there about 10 years earlier to visit the same type trade show. After checking
with our contact in Hong Kong we left most of our luggage in the hotel and in
the early afternoon left by train for mainland China. My wife had about 2
hours to visit the leather goods - clothes
area of the trade show. We then went to the hotel where we stayed 10 years
before. I believe the hotel cost was about $150. Our plan was to visit the
trade show the next morning and return to Hong Kong the next afternoon. We
already bought bus tickets. By the way
anyone going to mainland China should plan to leave China from the same entry
that got them to China. By going by train and returning back by bus we did a
no no. But they had mercy on us. My wife and I had dinner and then went to our
room. We were both pretty tired. We put on my material brace and during the
night I noticed it was getting loose. Stupid me, again I should have gotten my
wife to tighten the brace.
Well it happened again, this time dislocating with the stem
about an inch or more from the cup. What to do, What to do. About 2-3 AM I'm
calling the Hotel doctor. It a good thing I had with me some pamphlets on THR.
I showed the Doctor a picture of a THR and
he was overwhelmed. He did call for a Hospital Van and we were on the way to a
big Hospital complex. HOLLY MOLEY. I was put on a pulley and I was first taken
to the Emergency Room area where an X-ray was taken that showed a full
dislocation. The Emergency Room looked closed and on the pulley was taken
through a whole bunch of buildings to I guess an Orthopedic area. There were a
couple of people at the Hospital who spoke some English and my wife and I were
told the operating room area opens at 8AM. Some 31/2 hours to wait. We told
them no surgery and they said ok no surgery. HOLLY MOLEY we didn't know what
to expect next. Nurses came by and gave me some shots. About 7AM they brought
in breakfast which neither my wife or I care to try. After 8AM I was back on a
pulley and taken quite a distance to the Operating Room area. After a small
wait they put an IV in and I was taken into a Operating Room. It appeared that
five doctors were there to assist me. Something was put into the IV that knock
me out. When I woke up the Hip was back in place. After a little while back on
the pulley for the long ride back to the room I was in before. About 11:30AM
lunch was brought in. My wife had some of this. It seems they wanted me to
stay in the hospital for a number of days. We told them we had to leave that
afternoon to go back to Hong Kong. We also asked them about the cost and paying
in US Dollars. They finally said OK and
the bill, believe it or not, came to almost $320. A car came and took us back
to the hotel in time to catch our bus back to Hong Kong. After a small to do
at the border they let us pass through. As I tell everyone about this
adventure my wife and I were very lucky it happened then and not a week later
when we bombed their Embassy in Belgrade.
Yugoslavia. HOLLY MOLEY.
The next day (Friday) we left for Korea. At about 4PM my
wife finally let me take a walk to my old compound where I had previously
worked for a span of some 15 years from 1962 to 1991. I saw some of my
coworkers and was able to say hello and a possible goodbye. On the way back to
the hotel I visited the National Medical Center Emergency Room and checked in.
They said they can take care of me should the hip dislocate again. My wife
wanted me to go home right away and after pulling at her heart strings she let
me stay until Monday evening. On Monday I was able to see the head of the
Orthopedic clinic who specialized in THR surgery. X-Rays showed my hip was in
place but the doctor said each time it dislocates it gets less and less
stable. During the weekend my wife and I were able to visit her older brother
and her auntie with whom she will stay after I left. I spent the rest of
Monday morning with my old staff and they took me to lunch. I left Korea at
6:30PM Monday and arrived in Honolulu at 8:30AM Monday.
I could not see Dr Pavel or Dr Kane until the following
Monday and Tuesday (May 11). I got on Dr Kane's calendar for surgery on Monday
May 31. Monday holidays did not stop Dr Kane from doing his thing. I then let
people change my mind about having the surgery on May 31st. Dr Pavel, who
wanted me to have the surgery, said if I can go at
least 12 weeks without a dislocation I should be on the right track. Well we
lasted about six weeks until I guess I did something foolish in the office.
While talking with someone on our floor I sat on a table with my right foot
about 2 inches off the ground. When I got up to walk back to my area my hip
dislocated and I was stuck. I had them put me on a chair with wheels and roll
me back to my desk. I called 911 and had the ambulance take me the few blocks
to the Emergency Room. It was about 3 PM and so I waited there for Dr. Kane to
finish with his office patients. This was Wednesday afternoon (June 9). Dr
Kane came by and put my hip in place. I went home and went to work the next
day. I was OK until the following Monday morning . Well on Monday morning
while sleeping my hip dislocated about 4AM. Back to the Queen's Emergency
Room. This time Dr. Kane had me wait for him to complete surgery and then put
my hip in place in the operating room. I was able to leave the Hospital that
I got by till Wednesday morning when I got up about 5AM. My
wife was up and she was happy I was OK because she had a bad dream. My wife
left to go to church and walking. I was tired and went back to bed. Sure
enough I went to sleep and upon getting up the hip dislocated Again. My
daughter had to get me to the Emergency Room. They found Dr Kane at the
Airport as he was leaving for a Seminar on the Big Island of Hawaii. He had
his Associate admit me in the Hospital after he put my hip in place in the
Emergency Room. The plan was for me to stay in the Hospital until Monday when
Dr Kane will be back and take care of my hip. Surgery was scheduled for about
4PM on Monday June 21.
HOLLY MOLEY - After 3PM on June 21 I receive a visit from
the Business Office giving me two Form Letters. It's a good thing my wife was
there to calm me down and hold on to the two Form Letters. I gathered one
letter had my level of care changed from Acute to Intermediate for June 19
& 20. The second letter got my level of care back to Acute on June 21. The
Letter stated I would be responsible directly to the Hospital for my room and
board on June 19 & 20. I called Dr Kane's office and they knew nothing
about a change in my level of care. They finally took me to the pre-op area
and when the operating room nurse came to see me I knew my waiting was almost
over. I believe surgery finally began about 5:30 PM.
Dr.Kane knew I was very upset and he had a whole bunch of
support people visit me to include Psychologists. Dr Kane wanted to transfer
me to the Progressive Care Unit on Friday but that morning I received another
visit from the Business Office basically telling me my insurance will only
cover about 1/2 the charges at PCU. I stayed where I was until discharge.
About 10 days after discharge I received a Statement from Queens reflecting
about $1,3000 due & payable now for the two days room & board. After
many letters from me and Dr Kane I did not have to pay for the two days. In
fact my insurance paid Queens for the two days in question. Queens returned
the money and re-submitted the claim, insisting my level for the two days was
not acute. It turns out the difference between
Acute and Intermediate was $100 a day. I was already giving relief of all
charges for the two days. All these stress for me and Dr Kane over $200.00. To
this day I don't know who or why my Level of Care was changed, who submitted
at least two claims to my insurance for the two days, why was I notified just
before surgery, and why did it take 3 days to give me Form Letters. A
telephone call or a visit (like before being moved to the PCU) would have been
appreciated - I thought a major US Hospital was operational 24 hours a day 7
days a week.
My hip is firmly in place now. I wore the brace all the
time after the surgery and I feel by rubbing against the incision area it
helped cause an infection to develop. About a month after my surgery I was
back in the operating room to have the infection cleaned out. This time it was
not the usual incision for THR or revision. Dr Kane did go to the prosthesis
and it was infection free. However it appears he had to go through muscle and
when he closed the incision he used staples and heavy duty stitches. It was
very painful with some relief coming when he took out the stitches. Well with
two surgeries within a little over a month I was having difficulty with
mobility and pain.
Dr Kane had Head Doctors visit me in the hospital again and
I made an appointment to see one after leaving the hospital. I have been going
back on monthly visits. He has me on anti-depression drugs. On the second
visit I mentioned my leg was painful and he then asked if I ever thought of
hurting myself. I'm afraid I did not give a good answer -I told him the
suicide doctor was in jail and I couldn't visit him. Later on I did it again -
I told him I was taking Tylenol PM to help me sleep. He said it has a chemical
that causes confusion in people. I replied that it was OK since I was confused
enough. I started Physical Therapy again and we were making some progress
after 8 weeks. However the incision gave me much concern. It was bumpy with a
whole lot of scar tissue. We made it through the end of November and then
another infection developed. Back to the Operating Room on Dec 3rd. This time
the incision area is pretty clean and no scar tissue is present.
I have been making quarterly visits to my cancer doctor and
had normal blood tests. He had me take an annual SCAT SCAN on 9 Oct 98. It
reflected a small soft tissue mass next to the colon area. The radiologist
recommended another SCAT SCAN in about two months. Meanwhile I visited my
Surgeon (Dr Steinemann) to get my options from her. The second SCAT SCAN was
done 8 Jan 00 and it reflected the mass was getting bigger.
Other tests followed - up and down scopes, barium enema,
chest X-ray, SCAT SCAN of the chest and blood tests. All were normal. Surgery
was scheduled for Feb 24 but was called off When I flunked the treadmill test.
My Cardiologist, Dr Bales, performed an angiogram which reflected one blocked
artery. A week later he performed an angioplasty with a stint placed in my
artery. I had a third SCAT SCAN on Apr 15 and am waiting for the results.
Surgery is now scheduled for Apr 26.
I have been having a real rough time lately. I have wanted
to put this on paper and I am grateful it's almost accomplished. It has been
hard living on these clouds not knowing what going on in my gut and hip. I am
very happy I found you and hope to communicate with you and the other hippies
in the near future.
I close for now, take care fellow hippies and good health.
age 64 - Honolulu, HI 96822
Story - Part II - 4/25/00 to 7/31/00
has happened since I submitted my published STORY.
left off with surgery scheduled for Apr 26. My surgeon thought it best I be
admitted one day before because of my medical condition and to ensure I was
made ready for her the next day. Most of the preparation was for
naught as she saw enough with a scope. What she saw was a number of areas of
cancer and did not open me to try to remove some of them leaving some
behind. Thinking was to let Chemo work on all hot spots. So we
were able to leave the hospital in a couple of days.
all took the news pretty hard, especially after what I have been through
with my hip. Then my kids took charge with my son, a body builder
getting his fellow body builder to recommend the Janker Clinic in Bonn,
Germany where she went after her breast cancer came back.
youngest daughter in Los Angeles got us plane tickets and an
appointment with the City of Hope on 5/15/00.
went back to work at City & County of Honolulu and gave them two weeks
notice. It was finally my turn as they tried to pink slip me two years
earlier when I was in the midst of chemo and really feeling
terrible. But this time I will not change my mind like the Mayor did two
years ago. I really wanted to work one week and take most of the next
week - to rest for our trip to LA. My supervisor was not too happy and
so I spent the two weeks trying to teach a real dud my job. It seemed
strange they picked him because he already was kicked off one
job and he also bombed out when he done my job before. What stress besides
my other stresses, not what the doctor ordered. I made it through
Wednesday 5/10/00 (just two more days to go).
guess I took too many pain pills because Wednesday night I wind up
sleep walking in the kitchen and I fell down first on my left knee and
the second time my bad right hip took the worst of the fall. Man I was
in pain. Some how or other I made it to my bed and got my wife up.
We called an ambulance who hauled me off to Queen's Medical Center Emergency
Room. X-rays showed a broken hip below the stem. The amazing
thing was the hip didn't dislocate. Dr Kane (my hippie surgeon)
went to work on me again on Saturday and put a brace with screws and wires
so the stem will remain firmly in place. We stayed in the hospital for
about one week and little by little I was able to get around with my walker.
Of course this allowed me to miss my last two of work and meant we could not
leave for LA as planned.
Kane gave me the OK to leave for City of Hope about 10 days after surgery.
After discharge from hospital we got in three days of physical therapy.
My daughter rescheduled our flight to 24 May and my visit to City of Hope on
Friday 26 May.
saw Dr Kane on 23 May and his nurse removed my staples and Dr Kane gave me
the name and address of his mentor in LA should something not look/feel
right with my hip.
had a rough time on the plane but we finally made it to LA. Our
daughter picked us up in LA with a rented van (better for me to get in
and out of). Took it easy Thursday and on Friday afternoon we went to
City of Hope Clinic.
was well treated at the City of Hope and the cancer doctor went over my
case and told us the chemo's that are mainly used in my type of cancer.
We also discussed Clinical Trials with the main advantage being the
patient is given the newest experimental drugs that are readily available in
Europe but at home depending on the trials may become FDA approved.
also discussed the Janker Clinic in Bonn, Germany. The cancer doc said
that an option for us to consider. She could not locate any
specific clinical trial that would be starting in the near future.
major concern was my hip and the drainage from the incision area
since we arrived in LA. I already had two infection and was afraid of
another one starting from the incision area. Also Chemo makes you
more accessible to infection.
an appointment on Tuesday May 30 to see Dr Kane's mentor - Dr Dorr - at
the Bone and Joint Institute. I discovered when we arrived that
Dr Dorr was in surgery all day. Saw another doc and he said it would
be best to wait awhile before started Chemo. Dr Dorr's cleaned up the
incision area and taped it up real good.
was really surprised when we entered the waiting room area to see Hip
High Seats. I immediately thought those chairs are what we need in
made the decision to go home rather than trying to go to Bonn, Germany or
wait for some clinical trial to open up outside of Hawaii or even visit
with my wife's sisters in Indiana, Pennsylvania & Connecticut. My
reasoning was I was in no condition to do any traveling (I had a
rough time getting around with a walker) and with the chance of another
infection I would be better with my medical team at home.
stayed about 10 days with our daughter and left for home on Sunday 4 June.
Later that day our daughter left for a few days for a conference in San
Diego. This helped her get over mom and pop heading
back to Honolulu and being all alone in her studio apartment.
cancer doc as soon as we were back and he was on the phone when we entered
his office. He was talking to the University of Hawaii Cancer Research
Center about an upcoming Phase III Clinical Trial that would start
o/a 7/20/00. Even though quite a way down the road I decided to go for
it and the chance to get the newest chemo not yet approved by FDA.
I kept busy trying to track down Hip High Seats by spending lots of
time on the internet and long distance phone calls. I compiled all
this data and brought it up on my next visit to my Hippie Doc 6/20/00.
showed all was OK with my hip and with his Prescription started Physical
Therapy 6/22/00 and finished 7/28/00 - just before the start of the Clinical
Kane (my Hippie Doc) was very supportive of getting Hip High Seats for the
Hospital and gave me the name of someone high up who's involved in buying
equipment for the Hospital. My wife and I went to see him and knowing
Dr Kane gave us all the time we needed to make the pitch for the need for Hip
e-mail on 7/12/00 said several Hip High Seats were coming in for evaluation
and hopefully eventually for purchase. I am still hoping Dr Kane will
get some for his office and Dr Chiang of Rehab Hospital of the Pacific
would do the same for his hospital, especially after the sad experience I
had way back in Feb 99 when Dr Kane sent me there a few days after Revision
preparation for the Clinical Trial had blood tests, X-ray of the Chest,
another Cat Scan of my gut area, doing a Quality of Life Questionnaire.
It was finally getting close to the start date of the Clinical Trail.
Final approval came through by 7/20/00 and I was informed that my chemo
would be Treatment F and not either Treatment A or G.
the Clinical Trail started there were seven treatment plans (A-G).
Phase III - Final Phase) only three treatment plans remained. My chemo
would involve Oxaliplatin (still experimental - not yet approved by FDA) and
presently prescribed 5-Fluorouracil (5-FU) and Leucovorin. I gladly
signed the consent form and we were ready to rock & roll the week
Monday 7/24/00 had to visit the operating room area to see some friends and
have central catheter placed in my chest since one of the chemos is dripped
into over a period of 22 hours.
to my cancer doc office Tuesday 7/25/00 and Paul (the Chemo Chief) first
set- up the Oxalipatin for 2 hours infusion. After that 2 hours
infusion of Leucovorin and finally a pump filled with 5-FU was hooked up to
the catheter for 22 hours of infusion.
Wednesday went back to see Paul for 2 more hours of infusion of
Leucovorin and then another pump with 5-FU for an additional 22 hours of
Thursday no chemo just removal of the pump and IV line to the Catheter.
Saw the Cancer Doc and that was the end of my cycle of chemo.
following week is rest period followed by another cycle of Chemo.
On Tuesday saw the cancer doc about any reaction to the chemo and for blood
am not sure how many cycles of chemo followed by rest week I will be facing
before another Cat Scan to see if any improvement is reflected from the
previous Cat Scans.
about it for now - I will keep you posted of how things are progressing in
my hippie struggles and this cancer beast.
closing I am not only proud to be a HIPPIE and now I can also be proud to be
a COLONITE - Colon Cancer Support Group