|
Date
|
Weight
|
Initial Diagnosis |
|
Wednesday,
6/4/97
|
148
|
Dr. Rubenstein informed me that my chest x-ray was abnormal, and
it is likely that I have Hodgkin's Disease. This did not surprise me, as I had
told Dr. Rubenstein that I was afraid I had Hodgkin's Disease two weeks earlier.
In doing research to try to resolve my itching, I identified this as a
possibility many months earlier. It became all too real very quickly. The odd
thing about this day was, when I looked in the mirror that morning, I saw a
healthy individual. In the same mirror that night, I saw a very sick person. The
mind is a powerful thing.
|
|
Date
|
Weight
|
Confirmed Diagnosis |
|
Wednesday,
6/11/97
|
144
|
CT Scan of the chest/abdomen/pelvis was at 12:30pm, and at 3:45pm I met the surgeon who was to operate
on me the next day. Between the two appointments, I barged in on Dr. Rubenstein and insisted to
talk with him. I told him that I wanted the Stanford V chemotherapy regimen that I had read about
on the internet, and he explained why ABVD is the treatment of choice. He had some good arguments
against Stanford V, and I knew I had more research to do. I also mentioned the fact that I was having
abdominal pains, but Dr Rubenstein didn't think much of it. The meeting with the surgeon went well, he
seemed quite competent, but what do I know? At least his hands weren't shaking and he had no
apparent twitches.
|
|
Thursday,
6/12/97
|
144
|
Getting up at 5AM was never one of my favorite things to do. All the nurses at Good Samaritan
Hospital were great, and the surgery went well. I was awake for the removal of the lymph node
from my right neck, but I was given amnesiatic drugs so that I would forget it. They worked pretty
well, and I could only remember a little. The doctor said the node came out in one ball, which is
indicative of Hodgkin's Disease. I was pretty much out of it for the remainder of the day, and
my friends took turns watching me sleep and drool on myself.
|
|
Monday,
6/16/97
|
142
|
The big day was here. I had a good night's sleep for the first time in a while. My dreams were that of
a healthy person. I was playing softball and running around diving after the ball. The first
non-cancer dreams that I had since being told. All of the meditation, breathing exercises, and
visualizations I had been doing kept me calm. I got the news: Hodgkin's Stage 3BS. I was
relieved, it could have been worse. The bone marrow biopsy was a rough procedure, and Dr. Rubenstein
had a tough time getting a piece of my bone, so he had to work extra hard at it - lucky me. He also
agreed to give me the Stanford V regimen for chemotherapy and told me that I don't need radiation. He
examined my abdomen as the pains continued, but he couldn't find anything wrong. I went for a smoothie
after the biopsy, and I had to laugh at myself. I had a bandage on my neck from surgery, one on my arm
from a blood test, and one on my back from the bone marrow biopsy - not to mention I was limping. I was
a funny looking sight to behold.
|
|
Date
|
Weight
|
Re-Staging |
|
Wednesday,
6/18/97
|
142
|
After Sheila at Stanford got me a last minute appointment, I spent the morning rounding up all of my medical
records, for a 1:00pm appointment. Dr. Morgan listened to my story and then he examined me. He also reviewed
my pathological slides, X-rays and CT scans himself - not the reports, but the actual slides and films. He
then left and returned with Dr. Rosenberg, who re-examined me. Again, no explanation for my abdominal pains
is given. Rosenberg then laid down the law: I must have a Lymphangiogram, I must have radiation therapy in
addition to chemo, and I must have a gallium scan or he will not treat me. I agreed as long as chemo was to
begin no more than 1 week from today, I would not wait any longer. Both he and I are stubborn men, and it
certainly was an interesting interaction. He is one of the best Hodgkin's doctors in the country, and I was
lucky to get him. I agreed to enter into their clinical trial, and I was given a vaccination to protect me
from a form of pneumonia that I would be susceptible to during chemo. They also did NOT agree with my 3BS
staging, and they will re-stage me themselves.
|
|
Friday,
6/20/97
|
143
|
Went up to Stanford to receive the injection of Gallium. I was informed that there are absolutely no side
effects from having this injected into me, and it is completely safe. Then they brought out the syringe
full of Gallium and it was in a lead container. The syringe also had a metal shield around it. I guess
it is completely safe as long as they inject it into me, but they don't want to be anywhere near it. I
really am NOT looking forward to the Lymphangiogram next Tuesday. I am still concerned about my
abdominal pains, they aren't going away, and I really don't think they are related to being nervous.
|
|
Saturday,
6/21/97
|
143
|
I got a surprise in the mail today. I thought that it was just another bill from my original oncologist, but
it turned out to be the pathology report from my bone marrow biopsy. The diagnosis: Normocellular bone
marrow with no evidence of lymphomatous involvement. In English, that means that it's clean. That was what
I expected, but this made it official.
|
|
Monday,
6/23/97
|
144
|
The doctors at Stanford have told me that: "No man that has wanted to father a child after being treated with the
Stanford V has been unable to." That is hardly any sort of guarantee, so this morning started with a trip to the
Sperm Bank. This afternoon was the Gallium scan, which actually turned out to be a subtle form of torture. It
is not easy to lie perfectly still for 2 hours straight. The scan started over an hour late, so I was unable to get
to the airport on time to pick up my Mom, who will be staying with me for the next week. To top it all off,
the airline lost her luggage. Let's hope tomorrow goes a little more smoothly.
|
|
Tuesday,
6/24/97
|
144
|
Mom's luggage arrived at 2:17 AM, which ended any hope of a good night's sleep. The woman who performed
my Lymphangiogram was awesome. NO injections of blue/green dye between the toes were necessary! She had
over twenty years of experience, and she no longer needed the dye to find the lymph canals. All I
received was the Iodine dye that fills the lower lymph system. With the final pre-chemo test done, it's
time to summarize:
- Items given: Lymph node from neck, bone marrow, sperm, urine sample, stool samples, and enough blood
for all of Transylvania.
- Received: Corticosteroid injection, Vaccination, Gallium injection, 2 Iodine IVs, 6 Bottles Barium Sulfate,
2 Barium Enemas, Lymphangiogram Iodine Dye, and enough X-rays to cook your Thanksgiving Turkey.
- New Body Holes: Right Neck, Left Back, Numerous locations on both Arms, and the top of both Feet.
I am looking forward to starting chemo tomorrow. The pre-game warm-ups are over, it is finally time to throw
the first pitch. Ok, Mr. Hodgkin's Disease....shut up and get in the box.
|
|
Date
|
Weight
|
Chemo Week #1 |
|
Wednesday,
6/25/97
|
143
|
Going into this, I thought the staging would be pretty straightforward. I was wrong. Last night, I awoke
in the middle of the night drenched in sweat. "B" Symptom or Lymphangiogram side-effect? The results of
the Gallium scan showed no evidence of disease involvement below the diaphragm. The
Lymphangiogram turned
out to be inconclusive. All the lymph nodes that filled with the dye appeared to be normal, but the highest
nodes didn't fill. That means that either Hodgkin's is in those nodes, or they
didn't use enough dye. Their expert CT scan readers concluded that my spleen was not involved. So all the
data pointed toward stage II. Dr. Rosenberg told me all this, and then he stated that he staged me as IIIA.
That meant twelve weekly treatments of chemotherapy, followed by 5-8 weeks of radiation. The first day of chemo
was completed with no ill effects. I also received a call from the CryoBank that collected my sperm. They
consider 40 million a good sperm count for a single donation, mine was greater than 830 million!
*** Feel free to insert your own sexual inactivity joke here. ***
|
|
Thursday,
6/26/97
|
144
|
The number of pills that I was given to take on a daily basis is mind-boggling. Prednisone (x4) is taken
every other day. Acyclovir (x3), Septra DS (x2), Zantac (x2), Ketoconazole (x1), Colace (x2) are taken
every day. I was also given Ativan and Compazine to prevent nausea, these are taken as needed. Only
Prednisone is part of the chemotherapy, all the rest are to protect me from the side-effects of the chemo.
I spent most of the day with the hiccups, and it was extremely annoying. Except for that, no other side
effects were noticed.
|
|
Friday,
6/27/97
|
145
|
I called Stanford and reported the hiccuping side-effect and was told that only one other person on
the Stanford V regimen has had that problem. I received yet another prescription, this one for Thorazine.
I was cautioned not to take the Thorazine unless absolutely necessary, and not to take my Compazine if I
take the Thorazine. The hiccups were not as bad today, so I did not use it. So far, so good.
|
|
Saturday,
6/28/97
|
146
|
Well, my weight continued to return. The only downside to it is that muscle doesn't grow that fast, so
it must be fat. I awoke with the back and sides of my tongue slightly stinging. After I put the first
spoonful of cereal in my mouth this morning, I was assaulted by a disgusting taste. Everything that I
ate today tasted extremely salty. Just imagine your bowl of raisin bran covered in salt - that was what
my breakfast tasted like. Everything I drank tasted terrible as well. I knew that my taste buds would
change, but I thought it would be more gradual, not overnight. In addition, my jaw hurt and I was pretty
fatigued the entire day.
|
|
Sunday,
6/29/97
|
145
|
Today my jaw and all my teeth hurt, and everything still tasted like salt water. I didn't sleep at all
last night, despite being very tired. My mom went back to New York today, and I believe her visit
was good for both of us. Eating is quite difficult, and I do it only to put something in me. I also
experienced some heart-burn today; however, at this stage, so many things hurt that I can't keep track
of them all. I managed a nap, but it didn't seem to help much.
|
|
Monday,
6/30/97
|
145
|
Another restless night, so I called Stanford first thing in the morning, and described to them my miserable
weekend. For the heartburn, I was prescribed a different anti-stomach acid drug to replace the Ranitidine.
They think the insomnia is being caused by the Prednisone, so I was told to expect it to last for the
entire twelve weeks. That being the case, they prescribed me a type of sleeping pill to help. For the jaw pain,
they prescribed a mouthwash that should help with the soreness, but will make everything taste even worse.
The jaw pain is probably from the Velban, which I get every other week via IV, so I should have good and bad days
with this side-effect.
|
|
Tuesday,
7/1/97
|
143
|
Took one of the new sleeping pills and got a couple of hours of sleep. Better than zero, but certainly not enough.
It seemed like my heart was racing all day and night. My taste buds returned a bit, so only the first few swallows
of food were disgusting, the rest were bearable. I was pretty sore all over for the whole day. I was hoping to
have a good day before having to go for my second chemo, but it didn't happen. I must admit that I did feel
better today than I did on Saturday, and I think lack of sleep is a big part of the problem. One chemo week
down, eleven to go. It seems almost insurmountable at this point, so I will just have to deal with it one
day at a time.
|
|
Date
|
Weight
|
Chemo Week #2 |
|
Wednesday,
7/02/97
|
143
|
Only two hours of sleep again - this time after taking 2 of the sleeping pills. My heart continued to race
along all night, and my mind went with it. I haven't slept well since last Friday, but I still didn't feel
tired. I did feel miserable. Stanford called me in the morning and asked that I come in early so one of
their doctors could examine me. He determined that I was having severe esophageal pain, and not chest pain.
He gave me this home-brew mixture to drink, and warned me it was disgusting. I drank it - he was right. It
instantly numbed my throat and esophagus - to the point where I couldn't even swallow my own saliva because
my throat was not operating. I choked for about ten minutes on my own saliva, but I felt so much better.
He also commented that skinny people like me often have insomnia from prednisone, but he did not cut my
dosage. They also noticed that my blood pressure is high, probably due to lack of sleep. I received my
second round of chemo without incident (White Blood Count 1.8K), and actually slept for about an hour after
returning home. This round usually causes fever and/or chills for 24 hours, followed by the potential for
severe constipation. I was told that despite all the pain I felt last week, I will receive a new definition
of the word pain if I have the constipation problem this week. My nurse, Sheila, also told me that the first
week is the hardest. I was sure she was lying, but it made me feel a little better anyway.
|
|
Thursday,
7/03/97
|
144
|
Got around four hours of sleep last night. I think the improvement was due to decreasing the chest and abdominal
pains. Also got in a couple of naps today. Anytime the pain went away, I seemed to fall asleep. When the
pain would return, I would wake up. So it looks like taking Mylanta and Milk of Magnesia made a difference,
although the pain is far from eliminated. I did not get a fever and/or chills within 24 hours of my second
chemo, so I managed to skip that side-effect. My stitches were removed from my feet yesterday, so today was
my first day without a bandage in a while.
|
|
Friday,
7/04/97
|
142
|
Got another four hours of sleep last night, maybe more. I kept waking up during the night, but at least I
was not up pacing the house or watching TV. This afternoon I decided it was time to do something other than
stay in the house. I had no chest pain, and minimal abdominal discomfort, so I figured I would take advantage
of it. I put on my rollerblades/walkman and went outside for a little skate. I was kind of awkward at
first, but I took it easy. I only lasted about fifteen minutes before I was winded and had to quit, but for
fifteen minutes today, I was just another person enjoying the 4th of July and not a cancer patient. It felt
great. Came home and grabbed about a two hour nap. Abdominal pains returned later in the day, but it was still
my best day in the last week.
|
|
Saturday,
7/05/97
|
141
|
Only managed a couple hours of sleep last night. I also had a sore throat all day along with some swollen gums,
but no fever. Did my best to eat, but I felt full as soon as I started eating any meal. Everything tasted
bland, which is better than having it taste like salt water. My weight dropped again, which is a cause of
concern.
|
|
Sunday,
7/06/97
|
142
|
It was my best night's sleep in a while. Never managed to stay asleep for more than an hour at a time, but
I probably logged six or more hours total. I have developed a little numbness in my finger-tips as well.
Throat/gums were sore, but still no fever. Went rollerblading again, and lasted 19 minutes this time.
I was hoping to skate for half an hour, but I took what I could get. Eating had definitely become a chore,
and I spent a lot of time talking myself into my next meal. I went out and watched
my Ice Hockey team, the IceHawks, beat our
arch-rivals, the Snipers. It was good to see everyone on the team again, and it really made me believe that I will
be healthy again some day.
|
|
Monday,
7/07/97
|
141
|
When I awoke for the final time this morning, I had to lay in bed a while longer because I could not
believe it. I felt good. Good is always relative, still had finger-tip numbness, sore throat, swollen
gums, and my teeth hurt. All that didn't add up to much, and today was the best that I have felt
in a while. I actually went and did a little indoor rock climbing. Only managed six easy climbs, and I
tired very quickly, but it was more than I could have imagined doing a week ago. My hair started to fall
out this morning in the shower, so I had it seriously shortened. This will help a lot if it starts to fall
out faster, and I will go for the "buzz" cut when needed.
|
|
Tuesday,
7/08/97
|
141
|
My hair continued to rapidly move me down the road from "Grizzly Adams" to "Captain
Picard" this morning.
Today was another good day, pretty much the same as yesterday - teeth hurt, sore throat, swollen gums, and
finger-tip numbness. I was still able to feel a swollen lymph node in my right neck, so I have begun
to wonder if the chemo is actually working. Hopefully they can give me some good news of that sort when I
go to Stanford tomorrow. Week two was definitely not as bad as week one.
|
|
Date
|
Weight
|
Chemo Week #3 (Postponed) |
|
Wednesday,
7/09/97
|
141
|
What a disappointing day. My teeth hurt a lot, so eating was difficult. I went in for chemo, and
was NOT treated. My White Blood Count (WBC) was 1.3K, but only 400 neutrophils - way too low. My third
week of chemo was postponed one week to give my immune system a chance to regenerate itself. After
returning home and taking a nap, I awoke with a fever (100.8 F) and called Stanford. Next thing I knew
I was admitted into their "Compromised Host Unit" and started on an IV of antibiotics. They took a ton
of blood to test for all different types of bacterial infections. My fever had subsided by the time I
arrived there, but they were not going to let me leave. I spent the night there, with an IV in my arm, and
having my vitals checked hourly. I was given a shot of Neupogen to boost my WBC. I will have to give
myself these shots for 5 consecutive days after chemo for the remainder of the treatment - I have no idea
how I am going to manage to do that.
|
|
Thursday,
7/10/97
|
141
|
I didn't sleep more than a couple hours total with everyone coming into the room to check on me. Instead
of being allowed to stay at home where there are zero other people around to infect me, I had a total of
19 different people walk into my room at Stanford. Dr. Rosenberg stopped by and gave me some good news:
the chest X-ray they took the night before showed no sign of Hodgkin's Disease. The lump in my neck is
not a lymph node, but scar tissue from my surgery. The chemo was definitely working, but I still would
not receive my next treatment. Only 10% of the Stanford V patients ever have a treatment postponed, so
I was quite disappointed in my situation. I am worried about waiting for my chemo and giving this disease
a chance to re-group. At noon, I was informed that my WBC was back up to 3.3K with 2K neutrophils,
so I could go home. I left behind a mess of hair in my bed, so I got most of the rest of it sheared off
on the way home.
|
|
Friday,
7/11/97
|
142
|
I slept over 7 hours straight, which was unexpected since I am still on Prednisone. I felt great today,
so I stopped at work to say hello, and then went to a movie (Men in Black). Lost a lot of my beard this
morning, so I cut it down to a goatee. I had planned to space out these photos, but my hair isn't
staying long enough to allow that. I also forgot to mention that I was given Amoxicillin to take 3
times a day to deal with my sore throat, so I have even more drugs to take on a daily basis for the next 6 days.
|
|
Saturday,
7/12/97
|
143
|
I slept well again, and also felt pretty good. I was really not comfortable with this "chemo vacation" in
my mind. I was also itching again last night, although nowhere near as bad as I used to. Was it just
my mind playing games with me, or is the Hodgkin's waking up? Another theory I came up with is that I itch when
my White Blood Count is high. I was told that my WBC could reach as high as 20K after the Neupogen shot
since I was not receiving my chemo at the same time. My WBC was high back when I was itching before
diagnosis, so that might explain it as well. I went to see another movie tonight (Face/Off), so I was able
to take some more advantage of my new white blood cells.
|
|
Sunday,
7/13/97
|
144
|
I continued to feel like I was indeed on a chemo vacation. Sleeping was no problem again, and my appetite
was great. It was nice to actually experience that fact that my body rebounded from the chemo drugs and returned
to a somewhat "normal" state. That did not include my hair, which continued the exodus it started a week ago.
It has become pretty thin in spots, so it's almost time to get it shaved off.
|
|
Monday,
7/14/97
|
143
|
My natural talent for sleeping finally overtook the insomnia and I slept for about 10 hours. I lost
a bunch more hair this morning, so I just shaved off the rest. Felt great again, so I went down to
Planet Granite to scare the children with my bald head and get in a little climbing. Laurie Rogers
snuck in the first official bald-head rub while I was belaying, and I doubt it will the last one I get.
For some reason, when I look in the mirror now, I have a strong urge to play billiards. Rack em.
|
|
Tuesday,
7/15/97
|
143
|
Today was the last day of my "chemo vacation" and I had a relaxing day. I got some work done, stocked up on
groceries, and ate a ton of food. It was nice to experience feeling good again, but I hope that I can
complete the next ten weeks of chemo without any more interruptions. I have been itching for the past few
days. It was as if my body was letting me know that the Hodgkin's is still there. Today's entry in the "More Than
You Wanted to Know Department" is that my pubic hair started falling out as well; however, it does appear that my
body hair and eyebrows have decided to stay for the time being. The goatee has gotten mighty thin, but I
was not willing to shave it just yet.
|
|
Date
|
Weight
|
Chemo Week #3 |
|
Wednesday,
7/16/97
|
144
|
I received my third chemo treatment today, which is the first of two consecutive days. My WBC was 10.4K, so
no problems there. I was trained to give myself the Neupogen injections, and I will be retrained tomorrow.
Dr. Wilson examined me and said that he still could not feel my lymph nodes. I asked about the itching and
he said that it probably was the Hodgkin's causing it. They would not expect it be gone after only 2 weeks
of treatment, but he didn't think the itching was anything to be worried about. He commented that he thought
my new bald look with the goatee looked good, and he would keep it after treatment if he was me. Obviously,
he has been dipping into the Stanford Pharmacy and experiencing some side effects of his own. I suggested
that he reduce HIS dosage of Prednisone for his own good. Sheila missed my vein with her first attempt at the
IV today. The nurse also missed last week when I was admitted into the hospital, so that made two misses in
a row. I started to wear down a little in the evening, but so far it has been mild.
|
|
Thursday,
7/17/97
|
145
|
My second consecutive dose of Etoposide (VP-16) was received without incident. I was re-trained on the
injections, and so was my friend Karen, which gives me a back-up should I wuss out. I picked up
the Neupogen vials and the syringes, so I am ready to go. My taste-buds had gotten pretty bland by the
end of the evening. I also received a thank you note from a fellow Hodgkin's patient. She mentioned
on the Hodgkin's Mailing List that she was feeling very scared the other day, so I sent her a poem that
I thought gave a good perspective on our current situation. She loved the poem, printed it out, and framed
it for her wall. It made me feel good to be able to help someone else get through this. Here's the poem:
Bend In The Road
by Helen Steiner Rice
Sometimes we come to life's crossroads
And view what we think is the end.
But God has a much wider vision
And He knows that it's only a bend
The road will go on and get smoother
And after we've stopped for a rest,
The path that lies hidden beyond us
Is often the path that is best.
So rest and relax and grow stronger,
Let go and let God share your load,
And have faith in a brighter tomorrow
You've just come to a bend in the road.
|
|
Friday,
7/18/97
|
144
|
I gave myself my first Neupogen injection today. Since the stuff is so expensive, they really didn't give me
any extra to play around with. I managed to pull it off without any major screw-ups, so one down, 24 more to go.
Taste-buds continued to deteriorate, but I still managed to get out and do a bit of ice-skating in the evening
for some exercise.
|
|
Saturday,
7/19/97
|
145
|
Jaw pain started to set in, and things started to taste a little salty, but overall it has not been as bad
as week one so far. I spent the afternoon at Castle Rock State Park. I managed to hike about three miles total,
and also got in four climbs. I certainly tired much quicker than I used to, but I did far more than I
thought I could.
|
|
Sunday,
7/20/97
|
146
|
My teeth started hurting again and my sore throat is back, to go along with the jaw pain and bad taste-buds.
I guess I overdid it a little yesterday, because I was pretty sore today. All of these mouth related symptoms
are supposedly due to the Velban, which means I will probably have them after each odd week treatment. Pretty
much did nothing all day but relax.
|
|
Monday,
7/21/97
|
145
|
It was a miserable night, and I only got about two hours of sleep. I still had the tooth/jaw pain, sore throat,
and funky taste buds. Throw on top of it the fact that my bones just ache, and today pretty much sucked.
My guess is that the bone ache is from the Neupogen shots, which made today's shot a little tougher to administer.
|
|
Tuesday,
7/22/97
|
145
|
No sleep again, mostly due to the bone pain. My arms felt like they were made of lead, and no position was
comfortable. I called Stanford to see if they could help, and asked if I could skip the fifth Neupogen shot.
They were willing to give me a blood test, and if my counts were acceptable, let me skip the fifth shot this
week only. I declined. I figured that I needed to find a way to deal with this pain if I have to do all five shots
in the future. I took some Aleve, adding a new drug to my personal pharmacy, but it didn't work. They didn't want
to give me any narcotic based pain killers because they cause constipation, as do the chemo drugs, so Aleve
was their suggestion along with a heating pad. They also suggested that I take some Aleve along with Ambien
(a sleeping pill) tonight to see if I can get some some sleep.
|
|
Date
|
Weight
|
Chemo Week #4 |
|
Wednesday,
7/23/97
|
145
|
I got about four hours of sleep last night, so that was an improvement. The bone pain started to lessen early
in the day, and I received my fourth chemo treatment (WBC 2.7K). Upon returning home, things got bad. I
had a fever (101.2), which is a side effect of today's chemo, and everything hurt like hell. Also had no bowel
movement today, which is a bad sign, since today's treatment can cause constipation. I took Senekot and
Milk o Magnesia, but no luck. Started to feel a little better later in the evening, but this is an ominous start
to the "easy" week of chemo.
|
|
Thursday,
7/24/97
|
144
|
I didn't get any sleep again, but at least the fever broke during the night. The bone pain dissipated over
the course of the day, which was good, but still no bowel movement, which was bad. I also had no appetite
all day long, and I did not eat very much. Abdominal pain started up in the evening. I decided to take some
Milk of Magnesia right before bed and wound up vomiting within 10 seconds of swallowing it.
|
|
Friday,
7/25/97
|
144
|
I got very little sleep, and wound up vomiting again at 5AM. Called Sheila at Stanford, and I was told that the
vomiting is due to the constipation. I was given a prescription for Duphalac, which I was to take every 2
hours until my bowels moved. After three doses, and no luck, I ate a peach. I vomited within 10 seconds again,
so eating was definitely out. The dam finally burst about 8PM, and it wasn't pretty. I expected to feel better
after that, but I didn't. Still had abdominal pains and there is no way I could eat anything. The only bright side
was that I did get a nap after each dose of Duphalac throughout the day.
|
|
Saturday,
7/26/97
|
143
|
Squeaked by through the night. I ate 1/3 of a pear at 3AM, tea with 2 crackers at 7AM, and a piece of cucumber
around 9AM. I had diarrhea all night long, which Sheila says could be all that is able to squeeze through because
I may not have cleaned it all out yet. I was told that if I start vomiting again, I need to go the hospital.
Abdominal pains have been quite severe throughout the day, but they started to lessen a bit in the evening. I
had no appetite at all.
|
|
Sunday,
7/27/97
|
141
|
A 10PM bowl of Raisin Bran turned out be a huge mistake. I awoke every half hour throughout the night and
had to fight to keep it down. At about 6:30 AM, the abdominal pain became occasional cramps, and my body took instant
advantage and has slept all day. I continued to nibble more than eat, as I had no appetite still. Everything tasted bland,
and the nausea made every food choice a risk.
|
|
Monday,
7/28/97
|
140
|
I slept all night and awoke without any pain - what a relief! I spent most of the day waiting for the pain
to start up, and was almost in a state of disbelief that it didn't. Appetite is still poor, but slightly improved -
still nibbling more than eating, but doing better. Faded in the evening and went to bed early.
|
|
Tuesday,
7/29/97
|
139
|
I woke up early today, and was actually hungry. It was the first time that I had felt hungry in a while.
I definitely ate better today, but most food still didn't seem very appealing to me. I also had some abdominal
cramps today, but nothing like the pain of a few days ago. Today marked the 1/3 point of my chemotherapy, as my
first "cycle" is finished. I lost 5 pounds over that time, spent one night in the hospital, and had one treatment
postponed, so it took 5 weeks instead of 4. I thought I would hold up better than I have, and I must admit that
8 more weeks of treatment is quite intimidating.
|
|
Date
|
Weight
|
Chemo Week #5 |
|
Wednesday,
7/30/97
|
137
|
Today was the start of my second cycle, so they took a couple of x-rays to see my response to the chemo so far.
Based on the results, I have had a "positive response" - meaning that there is clear evidence of the mediastinal
mass and an abdominal lymph node cluster having shrunk. The abdominal shrinkage meant that I
was indeed stage IIIA when I started treatment. My chest x-ray from my night in the hospital was hardly
"no evidence" of Hodgkin's as they told me. I saw that image as well today and there was clear shrinkage of the
mass from before treatment to that day (but it was still there), and there was more shrinkage from that day
to today, although it has gotten hard to see. Look for yourself. I squeaked by
with a WBC of 2.4K, but only 1K neutrophils - just enough to receive my full dose of chemo today.
|
|
Thursday,
7/31/97
|
136
|
Today was my best day in quite a while. I slept for 8 hours straight, and had a decent appetite. I did a
little rollerblading in the afternoon, and then took a nap afterwards. I could certainly use more days
like today.
|
|
Friday,
8/1/97
|
137
|
Another good day. I got plenty of sleep and had a good appetite again. I started up my Neupogen shots again
today, so I am concerned that the bone pain will soon be upon me. I went ice skating in the evening to get
a little exercise.
|
|
Saturday,
8/2/97
|
137
|
Following my "odd week" pattern, things began to deteriorate today. Taste buds started down hill, and I was
pretty fatigued all day. Jaw pain started in the evening, and all I managed today was a walk around the
block.
|
|
Sunday,
8/3/97
|
138
|
I had some slight arm pain to go with my jaw pain and dysfunctional taste buds, but things have been real
mild so far. Definitely the best "odd week" Sunday so far. I have been taking Aleve to help prevent the bone pain,
so either I am not getting the pain as bad this time or it has been doing the job. Got in a long walk today as
well.
|
|
Monday,
8/4/97
|
138
|
The bone pain came on strong in the afternoon despite the Aleve, again mostly in my arms. I gave myself my
fourth shot of Neupogen for this week this evening after another long walk. It is certainly more difficult to
inject when you know that the injection is what is causing the pain. I have no choice, as I had barely
enough neutrophils for my last treatment even with the injections.
|
|
Tuesday,
8/5/97
|
138
|
No sleep at all last night, as the bone pain took control. My arms felt like lead again, and no position was
comfortable. I gave myself the final Neupogen shot for this week tonight, so hopefully the pain will dissipate in
a couple of days. Five weeks down, seven to go - I have no idea how I am going to last that long. I seem to
go into each "even week" treatment with some sort of pain and not sleeping, so I guess that is why I get
intimidated about now. Hopefully I can avoid the constipation this time through, and I can continue to
eat well. With the exception of the bone pain, all the rest of the "odd week" side effects were milder when
compared to previous "odd week" treatments.
|
|
Date
|
Weight
|
Chemo Week #6 |
|
Wednesday,
8/06/97
|
139
|
Sleep was sporadic, but I did get a little. The bone pain was not as bad this time through, but I received
nothing but bad news on my visit to Stanford. My White Blood Count was 0.7K - the lowest it has ever been.
Since the "even week" treatments are not immuno-suppressive, I was treated anyway, but it does not bode well
for next week. I was given another shot of Neupogen today, and will get one tomorrow as well in an effort
to prevent delaying the next treatment. My Red Blood Count also continued to drop, and it will soon
be another issue for me. I am now on Neutropenia alert (low WBC), and will wind up back in the Compromised
Host Unit if I develop a fever. To top it all off, Sheila missed my vein again - each time this has happened,
it was my right arm, so I got an extra hole poked in me today.
|
|
Thursday,
8/07/97
|
138
|
I slept in spurts during the night, and most of the day as well. Went up to Stanford for my 7th consecutive
Neupogen shot today, so hopefully that is enough to raise my counts by next Wednesday. I had no appetite
today, so eating was a chore. Even though I was fatigued most of the day, it was nice to sleep. I also
managed a long walk in the evening.
|
|
Friday,
8/08/97
|
137
|
Sporadic sleep during the night again. I had some slight abdominal cramps, and no bowel movement, so I
was slightly concerned about constipation. I think the lack of bowel movement is due to my decreased food
intake. I still had no desire to eat, and was in a state of slight nausea all day long. The inability to
eat is probably my biggest concern right now.
|
|
Saturday,
8/09/97
|
136
|
I got a decent amount of sleep, in multiple sessions during the night. Anything that I ate was forced down.
I was in the mood to be outdoors today, but the weather did not cooperate. I ate lunch in a local park, but
cut it short because it was too windy to stay. At least I had a bowel movement today, so I was not constipated.
Eating was the only real issue today, but it has a way of getting to me mentally. Today was a mental low - not
knowing how I could survive six more weeks of forcing food down my throat. I know it won't
truly be that
bad, it just seemed to get overwhelming at times.
|
|
Sunday,
8/10/97
|
135
|
The current sleep pattern continued. I awoke about every hour or two, but then was able to go back to sleep.
With the exception of eating difficulty, this has been a very mild week. I was slightly fatigued most of
the day, so that allowed me to get in a nap or two and pass some time - not bad at all.
|
|
Monday,
8/11/97
|
134
|
Since I felt ok today, I finally got around to scanning in some climbing photos that have been sitting
here for a couple of months. Some of them were from 7/19/97, which has been my only day of outdoor climbing that
I have managed so far during my chemotherapy. I thought I would include one here, even if it is a bit dated.
I still did not eat well today, although things have improved slightly on that front, so I feel that I am
about to turn the corner.
|
|
Tuesday,
8/12/97
|
135
|
I ended my first half of chemo with a good day. I actually felt hungry today! I will be heading into
the second half of chemo tomorrow with a lot of concerns and questions for Sheila and the doctors at Stanford,
but hopefully they will be able to provide some answers. I have lost my appetite and experienced weight
loss on each "even week" so far, and I would like to change that. I created a
summary chart of the first six weeks of chemo to help me analyze the trends. I also
am going to ask about Astragalus, which is an herb that might help keep my White Blood Count up during the second half.
|
|
Date
|
Weight
|
Chemo Week #7 |
|
Wednesday,
8/13/97
|
136
|
To my surprise, my White Blood Count was 5.2K today and my Hematocrit did not drop again, so I received
good news on both fronts. Part one of my seventh chemo treatment was administered today, and I will receive
part two tomorrow. I also met with a Nutritionist while I was at Stanford, and discussed my weight loss issues.
The answer to my herb-related questions was an adamant "No Herbs." I thought this was rather close-minded,
but I will adhere to their wishes. They said that herbs are unprocessed and can contain fungus, so they
don't want me to take any and risk infection.
|
|
Thursday,
8/14/97
|
136
|
An interesting night. I was unable to sleep around 1:30AM due to a sharp pain in my stomach. I took a hot
bath, which relieved the pain, and I then went to sleep for the evening. I awoke feeling fine, and received
part two of my week 7 chemo today. My friend Karen helped me out by cooking an 'increased calorie' dinner
for me according to the new recommendations of the Nutritionist, so we shall see if I can do better weight-wise
over these next 6 weeks.
|
|
Friday,
8/15/97
|
136
|
A quiet day. Slept most of the afternoon after running some errands. Gave myself my first Neupogen shot of
the week. I mentioned Hematocrit (HCT) and Wednesday without an explanation. HCT is the percent of whole blood
that is composed of red blood cells. Two weeks ago, I was informed I had become anemic, as my HCT had fallen
down to 30 (normal is 40-50 for men). If this value drops down to 20, I will have to have receive blood
transfusions to raise it back up. Last week it had fallen to 26.6, but it was 27 this past Wednesday, which
was part of the good news I received.
|
|
Saturday,
8/16/97
|
135
|
I was pretty fatigued for most of the day, and had to battle a bit of heartburn as well. My throat started
to get a little sore, so my taste buds should be gone soon as well - the typical "odd week" pattern, so no
real surprise. Snuck in a little ice skating in the evening.
|
|
Sunday,
8/17/97
|
134
|
I spent most of the day napping, which was just as well since my taste buds are shot and I was very fatigued.
This odd week weight loss is depressing, especially since it happened in spite of a conscious effort to eat more
calories.
|
|
Monday,
8/18/97
|
135
|
Only got about 4 hours of sleep sporadically spread throughout the night. The bone pain began to surface
in the arms again during the night. Administered my fourth Neupogen shot of the week today. Only managed
a walk around the block due to bone pain in the legs, which was a surprise.
|
|
Tuesday,
8/19/97
|
136
|
The bone pain got pretty bad, thus sleep was not an option. It was pretty intense in the arms again, with
a little leg pain thrown in for good measure. I have also had a sore throat, along with soreness in the
armpits and near the groin - all areas where you have lymph nodes. I am going to bring this up tomorrow
at Stanford and see what they have to say about it. The only bright side to these last couple days is that
I have been eating well. Fifth Neupogen shot is done, so if my counts are high enough, the bone pain
should be gone by Thursday.
|
|
Date
|
Weight
|
Chemo Week #8 |
|
Wednesday,
8/20/97
|
135
|
Today sucked. My White Blood Count was only 500, and my Hematocrit was only 23.8, which resulted in me
spending 9 1/2 hours at Stanford and receiving two units of blood. Neither Dr. Rosenberg nor Sheila was
there, and the doctor that saw me was totally new to me. She wanted to postpone my chemo, but I reminded
her that the even weeks are not immuno-suppressive. She checked and agreed to let me have my chemo, along
with another Neupogen shot and the 2 units of blood. I had abdominal cramps today as well, and have
had no bowel movement in 2 days - a bad thing heading into an even week. I have to give myself another
Neupogen shot tomorrow.
|
|
Thursday,
8/21/97
|
136
|
A pretty restless night with some sporadic sleep. After eating breakfast, I took some Senekot for the
constipation and vomited. I spent the day just laying around, and ate a mild lunch which I kept down.
I had some slight bowel movement after that, but I don't think I am out of the woods yet. Gave myself
the seventh Neupogen shot in the afternoon, and had a pretty tiny dinner.
|
|
Friday,
8/22/97
|
135
|
I was in the bathroom every half hour from midnight to 4AM with my intestines rumbling away, but no bowel
movement. After that, I fell asleep and slept almost the entire day away. I slept from 4-11AM, and 1PM to 5PM.
Eating was still sporadic and light.
|
|
Saturday,
8/23/97
|
134
|
Not much sleep last night, but that wasn't too surprising after sleeping most of the day before. Eating
was still light, and still no bowel movement. I was not sure if I was constipated or just haven't eaten
enough for anything to come out the other end, but it has gotten a bit scary. This was my second day in
a row where I soaked in a hot bath at three different times throughout the day, because it provided temporary
relief from abdominal cramps, nausea, and helps keep my food down.
|
|
Sunday,
8/24/97
|
134
|
Did not sleep a wink last night, as I battled abdominal cramps all night long. Finally, around 11AM
I had a good bowel movement and things were much better. I was exhausted and weak all day, but
I think I have finally turned the corner. Nausea was slightly improved, as was my eating, but still
not up to snuff.
|
|
Monday,
8/25/97
|
133
|
Slept a little last night, but not all that much. Then I wound up sleeping on and off from 1 to 4PM in the
afternoon, which definitely helped. Appetite was improved, although I still couldn't eat a "full" meal in one
sitting. Overall, I felt much better today as I was not in pain, but I did feel generally weak. I was
definitely moving slowly today, and had to take it easy.
|
|
Tuesday,
8/26/97
|
132
|
Sleep was improved, as was my appetite. Again, I spent the day taking it easy and relaxing. I was not as weak
as yesterday, but still was not exactly full of energy. Food intake was definitely up. This also marks the
end of my second cycle of chemotherapy, with the third and final cycle beginning tomorrow. This last cycle
cost me 7 pounds, but no treatments were delayed and I did not spend any nights in the hospital. I feel
pretty frail heading into this final cycle, I have lost a lot of weight already, and I am worried about
losing more.
|
|
Date
|
Weight
|
Chemo Week #9 |
|
Wednesday,
8/27/97
|
133
|
Slept well, and received my ninth treatment today. Today marked the last time I will be given Nitrogen
Mustard, one of the 7 drugs in Stanford V. My White Blood Count was 4.2K, and my Hematocrit was 32.9,
which was very good news. Sheila was back, but swamped, so I barely got to see her. She did get me a
prescription for Zofran to try to help with the even week nausea. I don't need it until then, but she made it
happen. Dr. Yuen saw me, and evaluated my newest chest x-ray - which he declared "normal". It looks exactly
like the one they did a month ago, and I pointed out that they could still see a little something on that
one, and he disagreed - he said that one was clean too. Sigh, I will be interested to talk with Dr. Rosenberg
next week, as he will be back from vacation.
|
|
Thursday,
8/28/97
|
133
|
Slept well, and woke up feeling pretty good. Went out for lunch and ran a few errands. Came home feeling
kind of tired and slept the afternoon away. I ate well today despite the fatigue.
|
|
Friday,
8/29/97
|
133
|
Continued to sleep and eat well, and actually feel pretty good. I am still taking it easy and I gave myself
my first Neupogen shot of the week today, so I know the bone pain is only a couple days away. My taste buds
started to go south towards the end of the day.
|
|
Saturday,
8/30/97
|
134
|
I was pretty fatigued all day, and things are fading fast. No bowel movement and appetite is heading south,
but I still managed a full day of meals anyway - which wasn't easy.
|
|
Sunday,
8/31/97
|
134
|
Slept a lot and was fatigued all day, but that was definitely better than most of the alternatives. The
only problem with sleeping a lot was that I slept enough to miss opportunities to eat. Taste buds are
pretty bland, but most everything else has hung in there. Managed a walk in the evening, which was the first
time I have done that in a while.
|
|
Monday,
9/1/97
|
134
|
Managed to get a reasonable amount of sleep as this continued to be a very mild week. Gave myself the
fourth Neupogen shot of the week, and some slight bone pain has started, but nothing severe. This has
been the mildest week to date of my treatment so far. The bone pain started to flare up a bit more as
the evening went on.
|
|
Tuesday,
9/2/97
|
135
|
Well, the bone pain arrived and sleep was difficult. After a hot bath at 5:30AM, I managed a few hours of sleep.
I continued to eat well, and managed a walk in the afternoon. Gave myself the fifth Neupogen shot of the week,
so it will depend on my counts tomorrow as to whether or not I get more shots this week. With the exception of
the bone pain here at the end, week 9 was mild and allowed me to put on a few pounds and build up a little mental
resolve for the stretch run.
|
|
Date
|
Weight
|
Chemo Week #10 |
|
Wednesday,
9/03/97
|
135
|
I hardly slept due to the bone pain, and went in and received my 10th treatment. White Blood Count was only 400
and Hematocrit was down to 25.1 - low enough for a transfusion. They elected to skip the transfusion, but did give
me another Neupogen shot (I'll give myself another tomorrow as well.). After returning from my treatment, I got
some sleep but then the bone pain came on with a vengeance - not just arms, but legs as well. It's
going to be
a long night.
|
|
Thursday,
9/04/97
|
134
|
The night wasn't as bad as expected. Only got a few hours sleep, but I expected to get none. The bone pain
subsided a bit during the day, and I administered the 7th Neupogen shot of the week. I am glad to be done with
that. I also started to taper off my dosage of Prednisone today. I get to reduce it by 10mg every other day
until I hit 0mg. It will be interesting to see what affect this has, as Prednisone is supposed to increase
appetite - didn't seem to do that for me, but if it did, this could get ugly over the last few weeks.
|
|
Friday,
9/05/97
|
133
|
I slept sporadically throughout the night, and then spent most of the day napping. I was very fatigued
and managed to get out and stock up on groceries, but otherwise I had no energy and laid around all day.
I began to lose my appetite, but forced myself to eat as much as I could.
|
|
Saturday,
9/06/97
|
133
|
A weird night that saw me wake up every hour on the hour. Each time I went to the bathroom (no bowel
movement) and then returned to sleep. I had a little more energy today, and ate ok, despite the fact
that I had little appetite. Hopefully my weight will stabilize, as the recent weight loss
preceded the
loss of appetite.
|
|
Sunday,
9/07/97
|
134
|
Another night of waking up a lot, but overall not as bad. Appetite was terrible, and as soon as I ate anything,
I felt full. I am pretty fatigued most of the time, so I am still napping during the day. My left forearm
has really started to ache, and I am not sure if it's the veins that are sore, or if I've just slept on it
too much recently. I am trying to build up my mental resolve for this next treatment that is approaching. It
is a double treatment, on both Wednesday and Thursday, and my low Hematocrit may wind up throwing a blood
transfusion on top of it for additional fun. It is also the last treatment that can be postponed due to low WBC,
but hopefully the 7 Neupogen shots that I received will come through for me.
|
|
Monday,
9/08/97
|
134
|
Another night of decent sleep, followed by a day full of naps. Unfortunately, I slept right through the afternoon,
which caused me to miss lunch. I managed my first decent walk in a while during the evening. I have a small
rash on my hands that is composed of tiny water blisters. What scares me about it is that my hands broke out with
these blisters at one point prior to my diagnosis, so I consider it all a part of the itching associated with
having Hodgkin's Disease. Chances are that it is just from all the baths I take drying out my hands, but it
definitely worries me a bit. I'll let them know at Stanford on Wednesday, but they will probably just dismiss
it as meaningless.
|
|
Tuesday,
9/09/97
|
134
|
I didn't fall asleep until 4AM, but that wasn't surprising based on how much I've slept lately. It was a
pretty mild day for me, and although I was fatigued, I had more energy than the past couple of days. I seemed
to tire more as the day wore on. It's time to take a deep breath and prepare for the stretch run. Two weeks
of chemo left, but it starts with the double treatment. Following each double treatment to date, I have had
a stretch of a week (Sunday-Sunday) of misery: bone pain straight into abdominal pain with constipation and
weight loss. Throw on top the fact I am likely to get another transfusion and the rash on my hands that has
me worried that the treatment isn't working, and it all adds up to a bumpy ride. I don't know what kind of
break I might get between chemo and radiation, but I expect it to be minimal, if any.
|
|
Date
|
Weight
|
Chemo Week #11 |
|
Wednesday,
9/10/97
|
135
|
Slept ok and went in for treatment. WBC was 3.8K, so I did receive the first of my back-to-back days of chemo,
and Hematocrit was 25.5 which was not good. Again, they skipped the transfusion, but this week's chemo
has hammered my Hematocrit each time I have received it, so I expect to receive my second transfusion on
next Wednesday. Dr. Yuen said he didn't know what my hand rash was, but he wasn't concerned. Sheila
offered her theory on it, which is that she thinks that I am allergic to one of the medicines that I have
been taking daily for the last 11 weeks, probably the Septra DS, but since I was on Prednisone, the allergic
reaction was suppressed. Now that the Prednisone is being tapered off, it is emerging. We shall see.
|
|
Thursday,
9/11/97
|
135
|
I had to go in for early treatment today, and it went without incident. I am still fatigued, so napping
was still a big part of my day. As of now, I am done with Adriamycin, Velban, and Etoposide, so I have
received 4 of 7 drugs for the last time. One of the remaining 3 is down to half dosages, so I am definitely
getting there. Unfortunately, I haven't yet experienced the last of the side effects from these drugs yet,
so the end is actually further out than it seems.
|
|
Friday,
9/12/97
|
136
|
I have been getting real antsy to do some form of exercise, despite my fatigue, and asked Sheila about it
yesterday. She told me that I would be able to exercise to tolerance only, but not push myself hard
and that I would have to wait until around 6 months post-treatment to really push it. This disappointed me, and I went
to see a couple of friends climbing today. I strapped on my gear, and managed only 2 climbs well below the
level I used to climb at. After the second climb, I was light-headed and out of breath - completely wiped.
I guess I now have a better idea of what she meant, and wound up being wiped out for the rest of the day
and night.
|
|
Saturday,
9/13/97
|
136
|
The fatigue continued, and I was wiped out for most of the day. Since Wednesday, my toes have been hurting
me quite a bit. I'm not sure what it means, but it doesn't seem to be getting better. The first few steps
are quite painful when I walk, but then it subsides. I guess I needed some new side-effects to keep it
interesting. Eating was kind of tough today as well.
|
|
Sunday,
9/14/97
|
135
|
Another day of fatigue where I was happy to do nothing. It is a kind of mental and physical fatigue in
that I lack the mental energy to want to do anything and physically I am weak all over. My toes still
hurt, and my muscles will tremble and shake for no reason, both arms and legs. I was still able to
administer my Neupogen shots, of which I have at least 2 more to do.
|
|
Monday,
9/15/97
|
135
|
More of the same. Absolutely no energy for anything. I spent a few hours just laying around in the
evening, no TV, no music, as I was just not up for any kind of external stimulus at all. The toe pain
is still there, and I was so weak that my hands trembled while I drank and ate.
|
|
Tuesday,
9/16/97
|
134
|
Just about a repeat of yesterday, except I had some evening bone pain thrown in. I gave myself the
fifth Neupogen shot of the week today, and I took my last dosage of Prednisone. It is nice to
be checking off these milestones, but I feel like I am rolling towards the finish line on an empty
tank of gas.
|
|
Date
|
Weight
|
Chemo Week #12 |
|
Wednesday,
9/17/97
|
134
|
I got very little sleep due to bone pain, and went in for my final chemo. MY WBC was 900, so I received
a Neupogen shot and have to administer one more tomorrow myself. My Hematocrit was 21.5, so I also received
a transfusion of 3 units of blood which forced me to be there for 12 hours. My final treatment was only
Bleomycin, as Dr. Rosenberg felt that my toe pain was being caused by Vincristine, and he didn't want to
make it worse. He told me that it was going to get worse before it gets better, and it will take months
for it to get better. Sheila missed on sinking the IV in my left arm, so I got poked an extra time
today. I had serious bone pain in the hospital, and upon returning home in the lower back/pelvis region.
|
|
Thursday,
9/18/97
|
135
|
No sleep again as bone pain was the big issue. The transfusion definitely helped, as my heart is no longer
racing - yesterday my pulse was 135 beats/min. My arms hurt a lot, especially the right arm, and my hands
shake a lot when I try to do anything.
|
|
Friday,
9/19/97
|
134
|
I dealt with bone pain until 8AM without sleeping, then I realized that only my right arm was still hurting,
so it wasn't bone pain anymore. I wrapped it in a heating pad and managed a few hours sleep. My right
arm pain is spread from my hand through my upper arm, including the wrist and elbow. I believe it is
from nerve damage from the chemo, and it has me quite depressed. This could go on for a while before
it gets any better. My hands shake like you wouldn't believe, and it has all affected me mentally. When
I should be excited about completing chemo, I find myself in a constant bad mood.
|
|
Saturday,
9/20/97
|
134
|
Took some Advil, and got to sleep around 4AM. The transfusion definitely made a difference, as I can now
walk around the block again without being out of breath. My appetite is non-existent, and I soon as I eat
anything I feel full. Forced myself to eat as much as I could today, but nausea was certainly an issue. The
rash is back on my hands as well.
|
|
Sunday,
9/21/97
|
133
|
Needed Advil again to get to sleep as the heating pad didn't work this time on my arm pain. My toes also seem
to be getting worse as they burn whenever I go from sitting or lying down to walking. They hurt only for a few
steps, then the pain stops. Hands are still real shaky and sometimes they cramp up pretty bad at times. Very
little appetite and the rash on my hands round out my lovely collection of side effects.
|
|
Monday,
9/22/97
|
133
|
Slept better last night, but did experience some itching on my legs. I did notice that my skin is very
dry these days, and that most of the places that itched have no body hair anymore. At least I used that
logic to convince myself not to worry about my hand rash and the itching - both of which were pre-diagnosis
symptoms. The burning in my toes has extended itself to include the balls of my feet, and there is now
a slight burning that is constant in my toes. It is bearable now, but I hope it doesn't get any worse.
Appetite still sucks, and I need to drink my first bottle of Barium Sulfate tonight/tomorrow morning between
2-4AM for the CT Scan on Tuesday.
|
|
Tuesday,
9/23/97
|
134
|
Slept ok, but had to get up early and head to Stanford for my post-chemo CT scan. I drank my Barium Sulfate
contrast at 2AM and 8AM as instructed. Managed to have 3 holes poked in my veins while at Stanford - one
for the iodine IV during the CT scan, one for the injection of Gallium (scan is Thursday afternoon), and
the third for a blood test. My WBC was 8.7K (wow!) and my Hematocrit was 33, both good numbers compared
to recent tests. I also had another chest and abdominal X-ray today. This CT scan was to take a look and
see what kind of job the chemotherapy did on the Hodgkin's Disease, so this is a big one. I should get
the results on Thursday morning when I meet with the Radiation Oncologist - Dr. Hoppe.
|
|
Date
|
Weight
|
Post-Chemo Tests |
|
Wednesday,
9/24/97
|
134
|
I slept well and actually felt a little better in general. The main issue these days is the peripheral
neuropathy, which is responsible for the numbness in my fingers, and more importantly, the burning pain in my
toes. Sheila got me a prescription for Elavil, which is a pain killer that should help me deal with
the toe pain - I will pick it up tomorrow. Today was the first Wednesday that I did NOT receive chemotherapy,
so I guess I am now officially done. Here's the final summary chart of my reaction
to chemo by day.
|
|
Thursday,
9/25/97
|
135
|
I spent most of the day up at Stanford. I had my Gallium scan today - I should get the results on Monday.
After meeting with Dr. Hoppe, it was decided that I would receive 9 weeks of radiation starting after a
2 week break. I will receive 36 Gy to my residual mediastinal mass and spleen, and 30 Gy to other
known fields of involvement. My CT Scan showed "significant reduction" in the size of my mediastinal
mass, which means it is no bigger than 2 cm now. My spleen was also completely normal, which means that
it probably was involved and Dr. Rosenberg was correct in staging me at IIIA. The burning in my toes
is still spreading down my foot, so I really hope this Elavil does the job - I need to take it each night
before bed.
|
|
Friday,
9/26/97
|
136
|
Slept well and felt better in general. My appetite is beginning to return, but the nerve pain in my feet
is continuing to spread - it now covers the front half of my feet. I was told it may take a few days for
the Elavil to start working, and tonight I'll take it for the second time.
|
|
Saturday,
9/27/97
|
137
|
Continued to sleep well and eat well, as most body functions are working well these days. Only the
foot pain and some mild itching remained issues. The foot pain continued to increase in frequency
and area. No luck yet with the Elavil.
|
|
Sunday,
9/28/97
|
137
|
No change. My feet were still burning and the Elavil didn't seem to do anything for me yet. It was nice to
have an appetite and I actually felt hungry multiple times throughout the day. If I didn't have the foot
pain, I'd have started exercising to rehab the atrophy in my muscles.
|
|
Monday,
9/29/97
|
137
|
My feet seem to be getting worse, and they burn constantly now - although it hurts the most right after I stand
up. I spoke with Sheila at Stanford, and she told me to raise my dosage of Elavil to 50mg a day. She also
gave me the results of my Gallium scan. All areas that lit up on the original scan were now clean, BUT there
is a new area that lit up in my right chest - sigh. I will be seeing Dr. Rosenberg on Wednesday to discuss
this latest development, and it will probably result in more tests.
|
|
Tuesday,
9/30/97
|
138
|
I did some reading last night, and it seems that Gallium scans rarely give false positives, although
sometimes gallium is attracted to sites of inflammation. Physically, I feel the same and my feet
remain my biggest issue.
|
|
Date
|
Weight
|
Radiation Prep-Work |
|
Wednesday,
10/01/97
|
138
|
I saw Dr. Rosenberg today and he informed me that he considered my Gallium scan result to be negative,
and he saw no new area in my right chest. Dr. Hoppe agreed with Dr. Rosenberg, so my radiation
treatment will proceed as planned. No change in my foot pain even with the 50mg dosage of Elavil.
|
|
Thursday,
10/02/97
|
138
|
The foot pain is not improving at all, so I tried to stay off my feet for most of the day. I was tired
today and spent a lot of time sleeping. Tomorrow I have to go to Stanford for the radiation prep work
so I will be on my feet a lot tomorrow, which is why I wanted to take it easy today.
|
|
Friday,
10/03/97
|
139
|
Spent the morning at Stanford for the setup work needed to begin my upper mantle radiation. I received
5 tattoos to mark off the field on my chest, and have to return next Thursday for them to test out
the radiation field before beginning. I am likely to start the next day on Friday. I did a ton of
walking around today and my feet are killing me.
|
|
Saturday,
10/04/97
|
139
|
I was really tired today and spent the whole day napping, which gave my feet a break after yesterday. It
doesn't really seem like the Elavil is doing anything for me, but I continue to take it.
|
|
Sunday,
10/05/97
|
139
|
Another day of being tired and having foot pain. The shaking in my hands isn't getting any better either,
but other than that, things are pretty good.
|
|
Monday,
10/06/97
|
139
|
I spent another day sleeping away the majority of it. The Elavil is supposed to make you drowsy and
relieve nerve pain, it seems that it only makes me drowsy as the foot pain remains unchanged.
|
|
Tuesday,
10/07/97
|
140
|
The more time I spend on my feet, the more they burn. It doesn't seem to be getting any worse, as my
heels remain unaffected. Still sleeping a lot, and my appetite is good. I continue to gain weight
during my little break from treatment, which will be good if I have any eating issues during radiation.
|
|
Date
|
Weight
|
Radiation Week #1 |
|
Wednesday,
10/08/97
|
140
|
Today could have been the last day of my break, as I am up to Stanford tomorrow for a simulation of
my radiation treatment. This will make sure that all the prep-work was done correctly and that all is
ready to start the real treatments. My first treatment might be on Friday, I'll find out tomorrow.
Today was another day of sleeping a lot and foot pain.
|
|
Thursday,
10/09/97
|
140
|
I went up to Stanford for the simulation of my treatment. The lead blocks are ready to go, and I will
begin my 9 weeks of radiation therapy tomorrow. This will schedule my finish about mid-December, just
in time to enjoy Christmas. Foot pain remained unchanged.
|
|
Friday,
10/10/97
|
140
|
Today was my first radiation treatment. It covered the neck, chest, and armpits and will be repeated
every weekday for 4 and 1/2 weeks. I will see Dr. Hoppe every Monday, and my blood counts will be checked
on Mondays as well. The actual time I was exposed to radiation was quite small, about 30 seconds to
the front and 30 seconds to the back. I was also given skin care instructions for the skin that gets hit,
as well as a special lotion to apply nightly.
|
|
Saturday,
10/11/97
|
140
|
Last night was the first night that I did not take my Elavil, and my foot pain didn't get worse today, so
I guess it wasn't doing anything for me. Took it easy all day and stayed off my feet.
|
|
Sunday,
10/12/97
|
140
|
Made it a whole weekend of staying off my feet. Tomorrow will start my first full week of radiation
treatments. Hopefully, I can get by for a while without side effects, but with my track record, it is
not likely. I am supposed to see Dr. Hoppe tomorrow as well, so I will let him know I stopped the Elavil
myself because it wasn't working.
|
|
Monday,
10/13/97
|
139
|
Radiation treatment went as planned, except I didn't get to see Dr. Hoppe today. I am supposed to see
Dr. Rosenberg on Wednesday, so no big deal. Things seem to run on schedule in Stanford's Radiation
Oncology department, so it's in and out right away for treatment. The drive is over an hour round-trip,
but I only spend around 15 total minutes in the hospital for each treatment.
|
|
Tuesday,
10/14/97
|
139
|
I saw Dr. Hoppe today after my radiation treatment. He said that if I haven't had any nausea yet, that
I should make it through the Upper Mantle radiation (the first 4 1/2 weeks) without nausea. He expects
I will eventually have difficulty swallowing and a dry cough, but that should be it. We shall see.
|
|
Date
|
Weight
|
Radiation Week #2 |
|
Wednesday,
10/15/97
|
140
|
Saw Dr. Rosenberg in addition to receiving radiation today. They took some blood and my counts were good
with a WBC of 5.4K and a Hematocrit of 35.3. A normal Hematocrit is >=40 for a male, so I still have a way
to go, but it is heading in the right direction. It was noted that my pulse was 120, which is very high, but
since my blood pressure was normal and my blood test looked ok, they weren't too concerned. I won't see
Dr. Rosenberg for another month, and he told me that I better have good news for him regarding my feet by
then.
|
|
Thursday,
10/16/97
|
140
|
Radiation treatment number five was administered today, and I was thirsty all day. This could be the
first side effect from treatment, as my salivary glands are being hit by the radiation. There is
a slight odor that I can smell when the radiation beam is on, and it is gone as soon as the beam
shuts off. Today I figured out that I only smell it when exhaling, so the smell must be coming from
inside my body - fun stuff. Sheila also pointed out to me yesterday that my eyebrows are now falling
out as well.
|
|
Friday,
10/17/97
|
141
|
My feet are finally showing some slight sign of improvement. When I stand up, which brings on the
worst foot pain, it no longer hurts as intensely or as long. It is far from pain free, but I do
finally feel a bit of improvement.
|
|
Saturday,
10/18/97
|
140
|
A lazy day where I laid around and stayed off my feet for most of the day. It even appears that there
is some "peach fuzz" growing where my goatee used to be - could my hair actually be returning? If so,
it will put an end to my plans for an Uncle Fester Halloween costume.
|
|
Sunday,
10/19/97
|
140
|
Another weekend gone by with not much done. Watched TV, played computer games, and basically continued to
stay off my feet and keep my shoes off most of the day. My feet felt the best they have in a long time.
The pain is definitely lessened (but not gone), and has been replaced by numbness. I may be able to start
walking for exercise again soon.
|
|
Monday,
10/20/97
|
140
|
I started back up the radiation treatments today. The peach fuzz is darkening, and there appears to be
the start of some hair growth on my head. Seems like not all of the body is in on growing hair, as my
hands have lost all their hair and my arms are thinning out.
|
|
Tuesday,
10/21/97
|
140
|
I had to give blood for a blood test today, and it turned into a fiasco. I no longer have any veins that show
in my arms or wrists, as they are all hiding because of the abuse they received during chemo. They wouldn't even
try the arms today as no veins were visible, so they went straight for the hand. First try came up
empty and was quite painful, but a vein was found on the second attempt. This is when the nurse screwed
up and wound up pulling the plunger out the end of the syringe she was drawing blood with. My blood went
all over the place, including drenching my pants and sneakers. The nurse got pretty flustered and a second
nurse had to come in and help deal with the mess.
|
|
Date
|
Weight
|
Radiation Week #3 |
|
Wednesday,
10/22/97
|
140
|
I began to feel "uncomfortable" when swallowing today, but no pain yet - this after nine radiation treatments.
I received the results of my blood draw yesterday, WBC of 3.6K and Hematocrit of 35.0% - so the white count is
dropping, and Hematocrit is staying constant. I stopped by to say hello to Sheila and let her know that my
feet were finally healing. She was very happy and said she would be sure to tell Dr. Rosenberg about it.
I was amazed at how genuinely happy she is when I have good news for her - I guess in her line of work,
she sees a lot of sadness and sickness as patients go through chemo, without getting to see them recuperate
afterwards as the radiation treatment is done at a different part of the hospital.
|
|
Thursday,
10/23/97
|
141
|
Still no real pain in swallowing, but I know it is not far off. Some slight redness has also appeared on
the skin area that is currently being radiated. My hair is definitely returning on my head, but the rest
of the body still isn't playing along yet.
|
|
Friday,
10/24/97
|
141
|
I had my eleventh treatment today, and I asked how many more treatments were left with the current radiation
field. I did not like the answer, which was eleven more. At the current rate, I will receive 10.5 weeks of
radiation, which will push my treatment all the way into the beginning of 1998 - there go the holidays.
|
|
Saturday,
10/25/97
|
141
|
My feet are feeling much better than they were, although they are still numb and have occasional pain. Did
a little stretching today, and I hope to be able to do it every day. This should be the first step towards
beginning to exercise again.
|
|
Sunday,
10/26/97
|
142
|
My exercise started earlier than I expected when I did a little indoor rock climbing today. My feet hurt
a ton with my climbing shoes on, yet the numbness in my feet prevented me from feeling the footholds very
well - numbness and pain, an unlikely combination. My muscle atrophy is severe, and I could barely manage
to complete the easiest climbs that Planet Granite has to offer - but at least it was a start.
|
|
Monday,
10/27/97
|
142
|
Completed radiation treatment number twelve today and also saw Dr. Walden and Dr.Hoppe as well. I was
told when my throat becomes painful, they will give me some medicine to help. I discussed my lack of veins
with them, but they still want me to have weekly blood tests. We also talked about the duration of treatment
and the fact that the holidays will likely not be too pleasant. There are not many options. I receive 150
rads every day to my upper mantle, which is why it will take 20 treatments to reach 3000. Another four days
will bring the total to my mediastinum up to 3600, and then there will be a break. They can either extend my
break to include Thanksgiving before starting up my abdominal radiation, or administer the abdominal radiation
at 180 rads/day - which would increase side effects, but shorten the duration. We won't decide until we see
what my blood counts are at the end of the first 3600 rads.
|
|
Tuesday,
10/28/97
|
142
|
I had to have blood drawn today for a blood test as well as receiving treatment number thirteen. I went
back to the Oncology Clinic to have my blood drawn, and although it took them 2 tries to hit a vein,
I didn't wind up wearing any of it. I also climbed some easy routes again, this time in my old climbing
shoes, which are a bit bigger and far more comfortable.
|
|
Date
|
Weight
|
Radiation Week #4 |
|
Wednesday,
10/29/97
|
143
|
Today swallowing became quite painful, so after treatment I saw Dr. Walden, who prescribed Carafate for
me to take. You know it is sad when you walk into the pharmacy and the pharmacist calls you
by your first name before you even hand them any paperwork - which is what happened to me today. I
guess I have become a frequent-flyer at Longs Drugs.
|
|
Thursday,
10/30/97
|
143
|
The Carafate seems to provide some relief between meals, but doesn't seem to do much when swallowing food.
The results of Tuesday's blood work were a White Blood Count of 3.5K and hematocrit of 35.6% - little
change from the week before. I went to a place called Hockey Workout this evening, which is a little
patch of ice where you can shoot hockey pucks, and put my skates on for the first time in a while. I
could hardly stand on them and my feet were pretty wobbly, so it looks like it is going to be quite a
while before I can return to the ice.
|
|
Friday,
10/31/97
|
143
|
I was pretty sore today, even though I only shot pucks for 15 minutes yesterday. I received treatment
number sixteen today, which brings my exposure up to 2400 rads. I also found out that they will be doing
the set-up for my abdominal radiation on Monday, which is a surprise. Perhaps they are not going to
give me a break between treatment fields after all.
|
|
Saturday,
11/01/97
|
142
|
Swallowing continues to be painful, mostly while eating. Eating softer stuff doesn't seem to matter, and
it has definitely resulted in me eating fewer times during the day. My hair continues to return all over
my body, and the hair on my head has reached the "Chia-Pet" stage. I actually have to shave again, although
the new hair from my chin to my chest is supposed to depart from the radiation.
|
|
Sunday,
11/02/97
|
143
|
Swallowing was actually a little better today - the result of having yesterday off from radiation. I did
some belaying at Planet Granite today, so I got in a decent arm workout. My skin is definitely getting
a little red from the radiation, so it looks like I have a slight sunburn on my neck/chest/upper back.
|
|
Monday,
11/03/97
|
143
|
The set-up for my abdominal radiation was done today, and a new shield will now be created. The shield will
be tested on next Tuesday. I received 3 more tattoos today, one on the abdomen and one on each side. Still
no official word as to when the abdominal radiation will start.
|
|
Tuesday,
11/04/97
|
144
|
Today's treatment brings my total up to 2700 rads, which means only 2 more days that will include my throat.
Today's blood draw went well, as they hit a vein on the first try - it's been a while since that happened. I was
told to start avoiding dry foods and to try to eat moist things so that things won't stick in my throat
for the remainder of the upper mantle treatment - which goes all the way to next Wednesday.
|
|
Date
|
Weight
|
Radiation Week #5 |
|
Wednesday,
11/05/97
|
144
|
My neck and back began to feel like I have a sunburn today, and they are getting red. I also have a funny
taste in my mouth - not strong or disgusting, just different. The hair on my neck and bottom of my new
goatee is gone now as well.
|
|
Thursday,
11/06/97
|
144
|
I finally saw Dr. Hoppe today, and after seeing the redness on my neck, he gave me a prescription for
Hydrocortisone cream. Today brought my upper mantle exposure to 3000 rads, so for the next four days
I will receive radiation only to the mediastinum. I also was told how long my break will be: Zero days.
Since my blood counts are staying steady (WBC 3.6K, Hematocrit 35.8%) and I seem to be tolerating radiation
well, my treatment will just continue on with no break.
|
|
Friday,
11/07/97
|
144
|
I went climbing for the second day in a row, and I definitely saw some
improvement in stamina and
strength over a week ago. Not a lot of improvement, but some is better than none.
I used the Hydrocortisone
cream and it helped a little. I now have a line of redness across the bottom of each side of my face, and
facial hair no longer grows below that line.
|
|
Saturday,
11/08/97
|
143
|
I did some calculations, and with no breaks my treatment should end on December 17th. That is of course
assuming that my counts hold up and that they don't need to slow down treatment due to severe side effects.
My throat was not doing too well today, so I didn't eat very much.
|
|
Sunday,
11/09/97
|
143
|
The skin in my armpits has become quite red and raw from the radiation, and it has become painful to lift
my arms up and spread that skin out. This is particularly noticeable to me while rock climbing, which I
did again today. I have been using the Hydrocortisone cream and it helps a little. It surprised me that this
happened now since the smaller radiation field that I received on Friday no longer included the armpits.
|
|
Monday,
11/10/97
|
144
|
I saw Dr. Hoppe after today's radiation treatment and he said that my armpits should begin to heal in a
couple of days. I also found out that my simulation with the new shield scheduled for tomorrow was
cancelled. It is now likely to be on Wednesday - if not, there is no way that abdominal radiation can
start on Thursday. My blood counts will be particularly important over the next couple of weeks. Since
I am not getting a break, they could drop pretty low.
|
|
Tuesday,
11/11/97
|
144
|
I saw Dr. Marquez after today's radiation treatment and told her that my right armpit has begun to bleed
now when the skin "cracks". She took a look and gave me some Vigilon patches, which are jelly-like moist
sheets of plastic that I need to keep on the injured skin 24 hours a day. Supposedly, the skin should clear
up in a couple of days. The verification of my new shield will now be done on Thursday right before my
first treatment to the abdomen.
|
|
Date
|
Weight
|
Radiation Week #6 |
|
Wednesday,
11/12/97
|
144
|
Today's treatment marked the end of upper mantle radiation for me, with abdominal radiation starting tomorrow.
The Vigilon wound dressing worked in an amazing fashion - my armpit felt so much better this morning, I couldn't
believe it (no bleeding, no pain.) I also received e-mail from a fellow Hodgkin's patient today (Diane) who told
me that she is now officially in remission! This is great news, as Diane received the same treatment as myself
(Stanford V with radiation) only she started before I did. Throughout chemo we often had similar side effects,
and she warned me about what to look out for each step of the way.
Today was also my 33rd birthday, and I must say that I felt much older today than I did on my 32nd birthday
- it was one hell of a year. It was a day that had me thinking of all I've been through this past year, and how
much help I've received from so many people. From people who were close to me to people I barely knew, or
even in some cases, people I hadn't met prior to my diagnosis - I can't even begin to count all the individuals
that have given me support in one way or another. I certainly don't feel like I deserved it, so all I can do is
say thanks to everyone - it has made this a special birthday for me.
|
|
Thursday,
11/13/97
|
144
|
I received my first treatment to the abdomen today. I didn't notice any side effects, and the odor I used to
smell upon exhaling during the upper mantle treatment was absent. I also got in some climbing in the evening
and am able to see that my strength continues to return slowly.
|
|
Friday,
11/14/97
|
144
|
Second abdominal treatment down, and so far so good. I even ate lunch right before treatment today and
didn't seem to have any issues keeping it down.
|
|
Saturday,
11/15/97
|
144
|
I am still having some trouble swallowing, which surprised me as I expected it to clear up pretty fast. The
nerve damage is still present in my fingertips and feet - no pain, just numbness. I will be seeing
Dr. Rosenberg this Wednesday, and I plan to discuss the nerve damage with him.
|
|
Sunday,
11/16/97
|
144
|
I have some good news for those unfortunate few that put up with me on a regular basis: my armpits have
healed enough so that I can use deodorant again! Of course, this removes the advantage of being able to
smell me and hide before actually seeing me. Today - deodorant, coming soon - shampoo!
|
|
Monday,
11/17/97
|
145
|
I saw Dr. Hoppe today after my third abdominal treatment, and he said that if I haven't had any nausea yet,
chances are I won't have any for the remainder of the treatment. He was
surprised that my throat hasn't
healed yet, but he said it should be fine in a few more days. I've heard that before.
|
|
Tuesday,
11/18/97
|
145
|
I ate right before receiving treatment today, and again had no problems with nausea. I had blood drawn
today, and they came up empty on the first try, but struck gold on the second. I was also told I might
have the day after Thanksgiving off from radiation, which would make for a 4-day break from treatment
next week and push the end date out to December 18.
|
|
Date
|
Weight
|
Radiation Week #7 |
|
Wednesday,
11/19/97
|
145
|
I wound up spending the whole day at Stanford as they were way behind schedule in the Oncology clinic. I
saw Dr. Rosenberg four hours after my appointment time, and he didn't have too much to say. He did say
that I had an odd looking beard (making fun of the fact that the radiation has cut off the corners and
bottom of it), and Sheila rubbed my head when she saw me. Now that I am not a regular, I get no respect.
I was told that it can sometimes take up to a year for the nerve damage to heal, so it wasn't a bad sign
that things aren't healed yet. I received my blood counts, which were a WBC of 3.3K and a Hematocrit of
35.9% - both reasonable values for right after the start of the abdominal radiation.
|
|
Thursday,
11/20/97
|
145
|
Treatment continued on without issue. I can now get about one-third of the way into a meal before my throat
starts to hurt, so that is an improvement. Climbing went pretty well tonight, and I continue to see
improvement. When I saw Sheila, Dr. Reddy, and Dr. Rosenberg yesterday, I told them that I was climbing again
at a lower level than before I began chemo. All three of them were concerned about it, but they didn't say
to stop doing it either.
|
|
Friday,
11/21/97
|
146
|
Today was my seventh abdominal treatment, which brings me to 1050 rads to the abdomen. Dr. Marquez saw me
after treatment, and she wasn't nearly as optimistic as Dr. Hoppe was regarding side effects. She wants
me to start taking Compazine an hour before treatment to prevent nausea, as she has another patient with
a smaller radiation field than me, and he has been vomiting regularly. She also warned me to avoid sick
people, and to contact her immediately if I get any kind of viral infection, even on off hours and the
upcoming holidays. I reminded her that my blood counts were holding up, but she didn't seem to care.
|
|
Saturday,
11/22/97
|
146
|
I felt somewhat fatigued today - slept late and took an afternoon nap. My throat seems to be almost healed,
as I got through most of my meals without any discomfort.
|
|
Sunday,
11/23/97
|
146
|
The fatigue continued, but I had no difficulties swallowing today. I hope this means that my throat is
healed and will no longer be an issue.
|
|
Monday,
11/24/97
|
145
|
I took Compazine as instructed before treatment today and then after treatment I saw Dr. Hoppe. He still isn't
concerned about nausea and said that Dr. Marquez panicked a little by telling me to take the Compazine before
treatment because of her other patients. He also said that my fatigue is pretty normal and he isn't concerned.
|
|
Tuesday,
11/25/97
|
145
|
I skipped the Compazine today, and again no issues. I had blood drawn today, and they hit a vein on
the first attempt - seems like my veins are doing a bit better. I did a little rock climbing for
the second day in a row, and things are definitely coming along. I had an opportunity to attempt to ice skate
tonight, but I passed on it. I did watch my team play (and lose) and it definitely made me want to get back
on the ice.
|
|
Date
|
Weight
|
Radiation Week #8 |
|
Wednesday,
11/26/97
|
146
|
I did some climbing for the third day in a row, and again saw some slight improvement in strength and
stamina. I received my tenth abdominal treatment today, which brings me to 1500 rads to the abdomen,
which is the halfway mark for this field. My spleen will get an extra 600 rads at the end. Tonight,
a strange thing happened. I sneezed, and it "pulled" a muscle in my abdomen. It hurt like hell for
a couple of minutes and there was little I could do about it except to endure it. The pulled muscle is
right in the middle of the abdominal radiation field so I will mention it to them on Monday.
|
|
Thursday,
11/27/97
|
146
|
Today was a fun Thanksgiving day. I ate dinner with some friends, and even helped out with the cooking
for a change. To my surprise, there were no known casualties from anything I cooked. Much like with
my birthday, this holiday took on new meaning in light of the recent events in my life.
|
|
Friday,
11/28/97
|
146
|
Did some more climbing today and continued to have success. It is very encouraging to see my strength
returning and being able to climb slightly harder stuff each time. It will be nice when I can return
to the ice as well, but I'll take what I can get now. Sonny and I are heading off to Auburn to spend the
weekend with some friends. First road-trip in quite a while.
|
|
Saturday,
11/29/97
|
146
|
I spent the day playing games with friends and eating junk food. It was my third day in a row without
radiation - it's kind of nice to have a 4-day break from treatment since I didn't get any break between fields.
|
|
Sunday,
11/30/97
|
146
|
Returned home and verified that all people who ate my Thanksgiving cooking are indeed still alive and doing
well. There is no truth to the rumor that I skipped town right after Thanksgiving because I expected otherwise.
|
|
Monday,
12/01/97
|
147
|
Resumed treatment today and climbed again in the evening. I read an interesting article by a woman named
Joan Green who is a rock climber and cancer survivor (Non-Hodgkin's Lymphoma - Stage III). She said that she
used the same method to get through chemo and radiation that she used to climb rocks - she just keeps reminding
herself of the following saying: "How do you eat an elephant? One bite at a time." When she climbs a rock -
in it's entirety it may seem insurmountable, but if she just concentrates on climbing it one move at a time,
she can make it to the top. I can understand her completely, when going through cancer treatment you just
have to take it one day at a time and not look at the whole thing. The entire treatment is way too intimidating,
but if you can just get through each day, eventually you will be done.
|
|
Tuesday,
12/02/97
|
147
|
 Today marked the 3/4 point of my radiation treatment. I had to give some blood today even though I still
haven't heard what my counts were from last week's blood draw. They hit a vein first time again. I've
included a picture of my goofy radiation goatee since I doubt that I will keep it much longer. Notice how it just
stops at the radiation line rather than continue down past my chin. Since there is no evidence of the hair
on my chin/neck starting to grow back, I think it's time to give up on it for now.
|
|
Date
|
Weight
|
Radiation Week #9 |
|
Wednesday,
12/03/97
|
146
|
I saw Dr. Marquez after treatment today and received my blood counts for the last two weeks. Last week my
White Blood Count was down to 3.1K, but it is back up to 3.6K this week. Hematocrit is holding steady, but
Platelets continue to drop - they are down to 160. The lowest they reached during the upper mantle radiation
was 152, but then again, they were only 112 at the end of chemo. She said that the abdominal muscle spasm
that I had last week was an unheard-of side effect - it's nice to know that I can still be creative.
|
|
Thursday,
12/04/97
|
146
|
After today, I have exactly 10 treatments remaining. I received treatment today and saw Dr. Hoppe afterwards,
and he too had never heard of abdominal muscle problems from radiation. I did some climbing tonight, and
much like Tuesday night's climbing, did not do so well. I seem to have reached a plateau that I will stay
at for a while, until I am able to increase my hand strength. The nerve damage in my hands causes some
cramping when climbing, and I think it is going to have to heal some more before I can hold onto the smaller
handholds that I am finding on certain routes.
|
|
Friday,
12/05/97
|
147
|
Nine left. I must say I am looking forward to the end and being able to enjoy Christmas as a regular person
and not spend it as a cancer patient. I also shaved off the goatee, and left behind only a moustache.
|
|
Saturday,
12/06/97
|
147
|
I went climbing again this evening, and I am still stuck at the current plateau. I tried to wear my new
climbing shoes again, but no dice - way too much pain. It is amazing how numb toes can hurt so much when
they want to.
|
|
Sunday,
12/07/97
|
147
|
I went ice skating today, and unlike my last attempt 5 1/2 weeks ago, I was far more successful. I did
OK skating, and lasted 1.5 hours without being out of breath. I still have a long way to go, but it was real
nice to be able to take the first steps.
|
|
Monday,
12/08/97
|
147
|
Eight left. Did a little rock climbing again today, with the key word being little. I have made no progress
climbing in the past week, and I have the bumps, scrapes and bruises to prove it.
|
|
Tuesday,
12/09/97
|
147
|
Seven left. I saw Dr. Marquez after treatment today, and told her that on Sunday, before ice skating, I had
another stomach muscle cramp up on me. She doesn't think that radiation has anything to do with it, that it
is just from lack of muscle use over the last 6 months. She told me to take 600
mg of Motrin before I do any physical activity that I haven't done in a while. I
had blood drawn again today, and once again it was on the first try. I have a
nice streak going. |
|
Date
|
Weight
|
Radiation Week #10 |
|
Wednesday,
12/10/97
|
147
|
Six left. I met with Dr. Rosenberg, who moved my short term disability "return to work" date from 1/02/98
to 2/23/98. I asked that he allow me to work a maximum of 40 hours a week during that time if I felt up to it,
but all he would let me work is 16 hours a week max and 4 hours a day max.
|
|
Thursday,
12/11/97
|
147
|
Five left. I found out today that I was supposed to see Dr. Hoppe last Monday after treatment, but they
forgot to tell me and now he is out of town. Did some more climbing tonight and remained at my current plateau.
It is becoming evident that I am no longer strong enough to execute the moves necessary to move on.
|
|
Friday,
12/12/97
|
147
|
Four left. Today brought my abdominal radiation total up to 3000 rads, which marked the end of the current
field. The final four days of treatment next week will be to the spleen only, for a total exposure of 3600
rads to the spleen.
|
|
Saturday,
12/13/97
|
147
|
I went climbing again today, and I felt a little bit stronger. I did not accomplish any higher rated
routes, but I did climb a couple of routes that I had not completed before. The current highest rated routes
that I have successfully completed during my "comeback" are rated 5.10-.
|
|
Sunday,
12/14/97
|
147
|
I must say that I am looking forward to the end of treatment this Thursday. I've been a patient for quite
a while, and I've pretty much had enough of driving up to Stanford every day. I'm hoping for a smooth
finish to this rocky journey.
|
|
Monday,
12/15/97
|
147
|
Three left. The field was made smaller today and included only my spleen. After radiation, I was given
my "orders" to have my blood drawn, and I questioned the reasoning behind it. They aren't going to postpone
my last few treatments, and my counts have been fine throughout the much larger fields. They agreed, so I
won't be getting poked this week. Did some climbing in the evening and did well.
|
|
Tuesday,
12/16/97
|
147
|
TWO left. I get the feeling that today was send-off day at
Stanford for me. I saw Dr. Marquez, who congratulated me on breezing abdominal
radiation and agreed that taking blood this week was not necessary. She said she
was really psyched that I was almost done. It's amazing how happy people can be
to get rid of me. Than I saw Dr. Hoppe and he was a bit more serious about
things. He frowned at the lack of blood work this week, but didn't ask me to go
get it done. He cautioned me that for the first 2 months after treatment, if I
come down with a fever over 100.5, I will need to call Stanford and get some
antibiotics. There are a
couple of potential delayed side-effects that he warned me about as well. We talked about my prognosis a bit,
and I asked him how many of the 11 relapsed patients in the trial to date ever reached the point that I am at.
His response was that half of them never had a complete response to chemo, which I did, and the others all
relapsed within the first year. He also cautioned me that I am likely to have a "scare" at one of my follow-up
visits. An abnormal chest X-ray, unusual blood work, or a swollen lymph node in my neck will be found at
a follow-up, but it will usually turn out to be nothing serious.
I then stopped by the Oncology Day Care Clinic to wish Sheila a happy holiday. It was nice to see her and I
thanked her for all she did for me. She introduced me to one of the new Hodgkin's patients that will
begin treatment in 2 weeks. We spoke for a while, and I did my best to re-assure him that no matter what
happens, the body has an amazing ability to bounce back. I think that I am walking proof of that.
|
|
Date
|
Weight
|
End of Treatment! |
|
Wednesday,
12/17/97
|
147
|
ONE LEFT. I must say that I am getting pretty excited about being done with treatment. I am definitely
hoping for a better year in 1998, but I couldn't imagine a better ending to this year. Things have
been going particularly well for me lately, and I have a feeling that this Christmas is going to
be a very special one. Did a little climbing tonight (which went well) and followed that up by
skating a hockey practice. My skating was poor, but my stamina was better than expected as I made
it up until the last drill of the evening before quitting.
|
|
Thursday,
12/18/97
|
148
|
It's finally over! Of course, it's never really over as I will go for check-ups every 2 months for
the rest of this year, then every 3 months the following year, every 4 months the next 2 years, then
every 6 months in the 5th year. After that, it's yearly. I just wanted to say "Thank You" again to
everyone who helped me through this. It could have been a ride to chemo, a visit, cooking food, a phone
call, an e-mail message, or just a prayer or good thought. Each and every little bit of support from each
and every person made a difference. I am going to start a
post-treatment journal
that I will update sporadically after check-ups and big events, but today brings a welcome end to my treatment,
and that also ends this journal. Health and happiness to everyone.
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