). Your visit was great, and I
only wish you could have stayed longer.
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This page was last modified on Sat Jul 14 13:34:45 2007.
The timeline was last amended for September 29, 2005.
As of February 3, 2001, a few select X-ray images are now included in the timeline, below.
Just call me Mike. No, I was not in a scuffle with the "National Hockey League". I've been in a battle with Non-Hodgkin's Lymphoma (NHL) since August of 1998. Please note that the description of some of my symptoms might put some folks off (esp. children). With that warning, here's the story...
Actually, before we get to the meat of this, I really need to thank a few people. My love to you all:
). Your visit was great, and I
only wish you could have stayed longer.
January 15, 1999 (Fri): Dr.
Aukerman sent me to an ENT (Ear, Nose and Throat) specialist to have a
look at my throat with a laryngoscope. This is a narrow tube with a light
source and camera at the end, which is inserted either up your nose or through
your mouth to view your vocal chords. The 'scope technician used the nose
route, which was a bit uncomfortable, but otherwise tolerable, even without any
topical anesthetic. Some abnormal behavior was observed with my vocal chords,
which might have explained some of my breathing and coughing problems, but not
much of anything else. The ENT doctor also found nasal polyps, which were
probably remnants from several years ago. (I had undergone a nasal polypectomy
previously.) The polyps seemed to be asymptomatic (meaning they weren't really
blocking the airway, and they weren't triggering any other reactions, such as
runny nose, etc.), so I got sent home with a prescription for Flonase (one of
those nose-squirting anti-allergy medicines) and an oral steroid, to see if the
steroid could help reduce the size of the polyps. (The idea was, if the polyps
reacted to the medication, we could probably avoid another
surgery.)
We waited in the ER for someone to see me, and for my sister, Sue, who was
enroute from her home about 60 miles away. Someone finally got around to
taking my vital signs and having me go through the story (above), so far.
After my sister arrived and relieved my Aunt Teresa and Uncle Bernie, I was
moved to a cubicle in the ER area. They took some blood (and managed to
really botch the needle removal, leaving me with a bad bruise for quite a
while) and I had a chest X-ray. (This was the first time I'd had a chest X-ray
since exhibiting any symptoms. We're still trying to figure out why Dr. Aukerman didn't order any X-rays.) After the X-rays
were reviewed, we (my sister and I) were informed that there was "a mass" in my
right lung, and that they needed to get a CT scan to get
a better idea of its size and shape. After the CT scan
(which required them to start an IV ... another "first" for me, along with the
CT scan) we waited around for what seemed like ages. The
ER Resident who was handling my case finally took my sister and I behind their
counter to look at a computer screen, where my X-ray was displayed, while he
explained that "this is what we're worried about" (as he motioned toward the
screen). The "mass" was huge, almost completely filling my right lung. Soon
thereafter I was finally moved to a semi-private room in the main hospital, and
Sue finally got to leave around 6:30AM, January 19.
The chest X-ray, at right, should be viewed as if I'm facing you. It shows
most of my right lung, and a portion of my left lung. Anything that shows as
white is a mass of some kind (bones, cartilage, etc.). As you can see, there
is only a small portion of my right lung that is not filled with foreign
material.
January 19, 1999 (Tue): The "medical day" started with me
having to drink down some liquid with barium in it, so that I could have a
CT scan of my abdomen. (During a subsequent CT scan, I read the bottle and joked about the fact that it
was "artificially flavored", but that there was nothing saying what it was
flavored with.) This stuff tastes like a cross between really weak orange juice
and a bad vanilla milkshake. Anyway, the CT scan went
okay, and later that afternoon, I was to have an "echo" of my chest. This is
just a sonogram (those same devices they use to view babies in the womb) of my
chest. After the chest echo, I sat waiting in the waiting area (how
appropriate! ) of the sonogram suite for about 45 minutes. Finally,
I was approached by someone from "angio" who informed me that they needed to
take care of some fluid in the pericardium around my heart. I figured this was
just something they'd be handling "in the fullness of time", but quickly
learned they were going to tackle it right away, as they wheeled me to the
angio suite.
I was informed that they needed to perform a pericardial centesis, which is
the draining of the fluid from the pericardium. This involved the insertion of
a small catheter near the end of my breast bone. I was left with a tube
attached to my chest at one end, and a plastic bag at the other. The process
withdrew 750 ml (!) of fluid. After this, I was finding it even harder to
breathe, but at least they were through with poking and prodding me for that
day. I was also heartened to know that my Dad was flying from Kansas City, KS
to Columbus, OH that night, and I would be seeing him the next
morning.
January 20, 1999 (Wed): Yesterday, I was informed that I was scheduled for a bronchoscopy for around 8:30AM today. This is a process similar to the laryngoscopy (see above) performed earlier, except that the tube used is longer, and passes beyond the throat and into the bronchial tubes of the lung(s). This was necessary to obtain a biopsy of the material filling my right lung, in order to properly diagnose and treat me.
The worst part of this process was the topical anesthetic sprayed into my nose and into the back of my throat. It was extremely bitter. I was told that I would be given two drugs via IV. The first drug would generally relax me, and the second was described as an amnesiac. I noted a generally relaxed feeling as the first drug was administered, and as the second drug was added, as far as I know, I passed out. Apparently, this second drug, while leaving one aware enough to handle instructions, leaves one completely without memory of the time during which one is under its influence. All I know is, I awoke around 2:30PM that afternoon back in my room. I was happy when I awoke, not only to find my Dad present, but also noticing that my breathing had been somewhat improved. I can only assume that during the bronchoscopy, they managed to open up some of the mass to allow more air flow to my right lung.
By this time, we knew we were dealing with some form of cancer, but we needed
the biopsy to determine the exact form and treatment. I had also presented one
of the tell-tale signs of lymphoma (though the symptom
is not uncommon with other diseases): a visibly swollen lymph node in my right
upper arm.
January 21, 1999-January 22, 1999: I had found out from a former co-worker, Nancy (who is dealing with cancer, herself), that as an OSU employee, I was entitled to a private room at no extra charge. I had my own room by now, and it was much easier for my visitors, since the private rooms were so much larger (i.e. more free space).
Early one morning, I was just sitting in my bed when a nurse rushed in and asked, "Are you okay?" Apparently, my heart rate had suddenly jumped up to 160 beats per minute. (I should explain that I was attached to a monitor which remotely displayed at a nurse's station near my room.) After confirming that I was not brushing my teeth (which apparently registers on the monitor as rather eratic heart behavior), I was suddenly overwhelmed by a whole gang of white coats and equipment. An ECG machine was attached, and a couple drugs administered to help relax my heart and lower my blood pressure. My heart rate finally started to fall, but I was left on at least one drug to control this condition for the next few days.
During this time, I also had a temporary line inserted. This is a small catheter which is inserted into a major vein, usually in the upper chest (as it was for me). This allows the administering of IV fluids without the need to start an actual IV in an arm all the time. To use the line, they just attach the IV line to a special connector at the end of the catheter. What was even better was that they could also perform blood draws through this line, which meant they didn't have to poke me anywhere near as often as they had been.
We found out the specific diagnosis during this time, and the news was mixed. I was diagnosed with "diffuse large cell lymphoma". (I was later to find out that I was initially at "stage IVb [4b]".) Not only was my right lung involved, but my heart (as evidenced by the fluid around it), and various other sites including my pancreas and kidneys. (The involvement of my pancreas was probably the reason for my "frothy" stools, earlier.) Flow from my liver was also affected, and I confirmed the obvious symptom whenever I caught myself in the mirror: jaundice. (I definitely had a yellow pallor.) While the involvement was quite serious and widespread, this particular kind of cancer is known to react quite favorably to standard chemotherapy. While I was "sick as snot" (as Dr. Stanek put it), given the form of cancer, my age, and my otherwise good health, he anticipated a favorable outcome.
Becuase of the fluid around my heart, Dr. Stanek decided
to administer my first dose of chemotherapy
("chemo", for short) that Saturday in the Intensive Care Unit (ICU). He wanted
to make sure that with all the fluid to be added to my system, that I didn't
have a relapse of the build up of fluid around my heart, and he needed more
attentive care for me to watch for this, than I would have received in a normal
hospital room. I went to the ICU on Friday (Jan. 22) night. That night, they
started what Dr. Stanek referred to as "alkalizing" my blood, to prepare for
the chemotherapy, which amounted to adding various
fluids via IV.
January 23, 1999 (Sat): I had the first breakfast in the hospital I could really enjoy. (The food during my hospital stay was never great, but this particular meal I was pretty happy about, since I could eat everything.) I also had a sponge bath and my hair shampooed that morning, and by noon, I was feeling pretty good. That's when they started the pre-medications for my chemo.
My chemo regimen is known as CHOP. Some of these drugs can be highly toxic. (The vincristine is fatal if it's injected into the central nervous system [intrathecally]. Both the vincristine and adriamycin are known as "vesicants", meaning they can burn your skin if you happen to get them on you.) Prednisone is a steroid which is given orally to help alleviate some of the aches and pains caused by the other three drugs, and it's also thought to help aid in limiting cancer growth. My pre-medication usually involves oral Zofran (for anti-nausea) and IV Ativan (anti-anxiety and anti-nausea, a.k.a. Lorazepam). I wasn't told as such, but I suspect I was given other drugs to generally relax me, since I was due for a bone marrow biopsy. When they performed the biopsy, I was barely awake and there was little or no pain.
I was a bit upset since my breakfast came back up. It was more of a gag
reaction than nausea, but regardless, I was steamed, since I had enjoyed it
when I ate it. Imagine! ...Enjoying hospital food: Go figure!
January 24, 1999 (Sun): I was moved back to my private
room in the main hospital. I was due to be moved to the Arthur G. James Cancer
Hospital and Richard J. Solove Research Institute (a.k.a. "The James") as soon
as a room was open. (The James is part of the OSU Medical Center complex.) I
was moved to The James later that day.
January 25, 1999-January 31, 1999: The next week was largely uneventful. Since I had a couple tubes coming out of my chest, I could only lay on my back. Besides the IVs and heart monitor, I was also on an oxygen cannula, since my blood-oxygen level was a little low. The IVs included Vancomycin, which is probably one of the strongest antibiotics available. This was to help diffuse any infections, since I'd been presenting with a slightly elevated temperature. I was also on several oral drugs, including some anti-fungals (both liquids and pills). Approximately once a day, I'd also have my blood sugar tested, and an Insulin injection, if necessary. (The NHL had made it into my pancreas, so my insulin production was a bit off.) Since I was largely sedentary, I was also on Heparin to prevent bed sores. Since the chemo has a deleterious effect on WBCs, I was also on sporadic injections of Neupogen, which helps stimulate white blood cells. Of these three drugs which were injected (subcutaneously, or "sub-q", for short), the Neupogen was the worst, since its most serious side effect is lower back pain. I s'pose this is because it stimulates the bone marrow, and a large portion of your bone marrow resides in your hip bones.
Probably my biggest problem,
though, was trying to cough. With all the work they'd been doing inside my
chest, coughing was sheer agony. When I had to, I was grabbing the rail on my
bed in pain as I was attempting to suppress the coughing, since it hurt so
much. My sister, Sue, stayed with me one night and she really panicked when
this happened the first time after she got there. (I didn't have a chance to
warn her about it, beforehand.) When I could cough, I managed to bring up some
rather nasty-looking stuff, and I was provided with a suction tube for just
such an event.
I also experienced a common side-effect from the CHOP, jaw pain. This only seemed to last a few days, but it was pretty painful at one point. Luckily, the main course for supper that day was sloppy joes.
The chest X-ray, at left, was taken on January 28, 1999. The opening in my right lung seems to have opened up a little at this point.
For a time, I wasn't having any bowel movements, so I was put on an oral liquid known as "Laculose". I was on this for about two days, before we saw any results. When I did finally "recover", it was what I'd term "explosive". Unfortunately, there was no proof. To explain, I was on a powerful pain reliever to help with the bone pain generated by the Neupogen. The nurses apparently gave me two doses too close together and that night, the Laculose decided to kick in. I woke up in a stupor and couldn't understand why I had all these tubes and wires hooked to me. So, I non-chalantly just disconnected myself and walked to my bathroom. There was a trail of blood drops from my temporary line leading into the bathroom, and I had come out of the effects of sleep and the pain reliever enough at this point to minimize the leakage. I did my "business" and flushed. Flushing was the problem, since the nurses had no "proof" of the event. (Hospitals like to monitor patients' "ins" [food and drink consumed] and "outs" [amount of waste].) When I made it back to my bed, I hit the call button and explained that "somehow" I had managed to pull my IV. The nurse rushed in and cleaned me up and re-attached me to my IV and monitoring equipment. Once my head had cleared I realized that I'd have to stay on the Laculose until someone actually saw the results. Crap! (ha ha)
The effects of the Laculose lasted well into the next couple of weeks. I also underwent a couple more chest X-rays and another CT scan session (chest and abdomen), so I had to deal with drinking "yucky stuff" again.
The tube they had in my chest wasn't drawing any more fluid from around my
heart, so they decided to remove it late in the week. I was so happy to be
without that extra appendage!
February 1, 1999 (Mon): Early this morning, I had another set
of chest X-rays. Before they were reviewed, I was told that another
bronchoscopy might be necessary, along with a bronchoplasty, to push away some
of the lymphoma mass in my lung, so that I could enjoy
better air flow. I should mention at this point that the OSU Hospitals have a
policy where they "rotate services" each month. Thus, a few hours later, after
the X-rays had been reviewed, I had a different pulmunary specialist assigned
to me, and she informed me that my lung had shown remarkable improvement. As
such, further bronchoscope-related procedures shouldn't be necessary. That was
certainly encouraging.
The chest X-ray at right is a bit fuzzy, since I couldn't just scan it in as I did with the other X-ray images, here. Instead, I had to place it on a "light box", take a picture of that with a digital camera, then play with the image in PhotoShop to get it into a reasonable form and size. It doesn't have the detail that the other X-ray images here do, but I think you'll agree it's obvious that the chemo definitely kicked into "high gear" since the last X-ray.
That day, they also decided to move me to a different room within The James. My WBC counts were a little
low, and the room they wanted to move me into wasn't ready, so that night, they
had me wait in the visitors' lounge with a mask over my face to prevent me
inhaling anything nasty. My lower back was killing me (Neupogen side-effect), and I was so happy when they
finally moved me into the new room, and I had a chance to lay down,
again.
February 2, 1999-February 4, 1999: The rest of the week, things just kept looking better. They started weaning me off the various drugs on Wednesday (Feb. 3), and I could finally breathe without the need for the oxygen cannula. Since I was no longer tied to the wall (the cannula was attached to a valve on the wall behind my bed), I could finally move about a bit. The last two or three days of the week, I managed to take a shower, which was quite a relief from the sporadic sponge baths. Thursday (Feb. 4) night, I was off all the drugs, and I managed a short walking tour of the floor I was on, within The James.
By this time, the swelling in my right upper arm had disappeared (at least visually).
On Tuesday or Wednesday, the various doctors that came in to see me from time
to time started using the "h"-word ("home"). This was quite a pleasant
surprise, and when I went to bed on Thursday night, it was with the knowledge
that I could be going home as soon as that weekend.
February 5, 1999 (Fri): I'm going home today! The day started out great, and looked like it was going to get even better when my breakfast arrived. It was the same menu as I had the morning I got my first chemo. It was comprised of a sausage link, French toast w/ syrup, coffee, orange juice, and cereal. I had just finished with the sausage (which I decided to attack first), when a doctor rushed in and said, "Don't eat anything more." For some reason, they thought they'd need to put me on an all-fluid diet to prepare for the replacement of my temporary line with a more permanent one. (The procedure is really no more involved, and just requires a local anesthetic. Some of the professional folks who were in on the plans also questioned this.) Anyway, I was a bit "miffed" to once again have my favorite breakfast ruined. They came in a couple hours later with a kind of brunch, which was thoroughly unenjoyable. Soon thereafter, they decided that rather than go through the pains of installing a permanent line, they'd just remove the line I had, and when I went in for subsequent chemo treatments, they'd just start an IV in my arm. Shoot! ...All that drama with my food for nothing!
Anyway, I was still pretty happy since I was going home that day. The removal
of my temporary line went without a hitch. The lunch was pretty crumby, so
after we got to my Uncle Bernie's place, I "pigged out" on some Kentucky Fried
Chicken. (I was quite happy to hear I could eat whatever I wanted. I'm really
into KFC's cole slaw.) It's a good thing my appetite was so strong, since I
had lost 25-30 pounds in the hospital. When I was discharged from The James, I weighed in at 135 pounds. I was told that 90-95%
of the lymphoma had been wiped out, and that I should
expect my hair to fall out from the chemo. My hair
started to leave my head today.
February 6, 1999-May 11, 1999: Through this period, I had chemotherapy sessions approximately every 21 days, starting Feb. 12. The first day of the cycle, I was given Rituxan, a form of immunotherapy. On day four of the cycle, I was given a hit of CHOP. For about six weeks, I was also given a weekly spinal infusion (intrathecally) of Methotrexate and Hydrocortisone. (The Methotrexate is a form of chemotherapy, and the Hydrocortisone is to help reduce swelling from the procedure. Like the Prednisone in the CHOP, the Hydrocortisone may also help to reduce cancer cell replication.) These spinal infusions were largely a preventative measure, to make sure the lymphoma didn't get into my central nervous system.
By the way, if you need to get a spinal tap/infusion (also known as a "lumbar puncture", or "LP", for short), don't be put off by the dramatization of the procedure that's often portrayed in the media. After administration of the local anesthetic (which in and of itself is not particularly painful, if a syringe with a small-bore needle is used), there is very little pain (if any) during the procedure. Just make sure the doctor performing the procedure is well- experienced and careful, and you should have no problem. There is a problem with young children (due to "baby fat") and those who are overweight, since the extra tissue can impede the doctor's ability to locate the exact point in the spine, where a catheter is inserted. Again, as long as the doctor is careful and patient, the procedure most often goes quite smoothly and painlessly. The patient does need to lie prone for at least 45 minutes to an hour, afterwards, and there's a common side- effect of an headache (which I experienced) for a few days after the procedure. I found that I could almost immediately alleviate the headache by laying flat on my back for 30 minutes to an hour.
My hair really started falling out, and building up all over my apartment.
Early on the week of Feb. 8, I couldn't take it anymore, and had most of my
hair shaved off. The picture, at left, is what I had left of my hair during
my mother's visit in April. Other side-effects I've been experiencing as a
result of the chemo include changes in my sensation
of taste (I can barely stand most soda-pop, anymore) and what's known as
"peripheral neuropathy". This latter symptom often manifests itself by the
extremeties (fingers and toes) tingling slightly (as if they'd "fallen
asleep"). There's some loss of sensation along with this.
On Feb. 12, I had another chest X-ray (see right), and I got to see the difference between that and one of the films taken in the hospital...what a difference! All that was visible was some whispy tendrils, vs. the solid mass from the older film.
Apart from a short stint with the flu (which both my Dad and I dealt with, since he was staying with me in my tiny "efficiency" apartment), things went pretty well. I managed to sneak into work from time to time, and we would often check out the local restaurants (which are, unfortunately, few and far between... within walking distance anyway). My Mom visited for a little over a week in mid-April, and we managed to get around a little more, since she rented a car.
I have needed to go back on Neupogen every so often. It was quite an experience learning how to self-administer this, and I have a new respect for folks who have to give themselves injections on a regular basis. I'm only thankful that my need for this is much more short-lived.
Dad returned to Mom's side in (outside) Kansas City on May 11, and I've since
been going into work full-time, barring time off for tests and
procedures.
May 25, 1999 (Tue): I had my last (sixth) CHOP session today. I still have one more Rituxan infusion in a few weeks, and then I will have some radiation therapy aimed primarily (if not exclusively) at my right lung. Once all the therapy is over, I'll get a gallium scan, which should (hopefully) indicate I've gone into remission. I've since popped back to my weight before going into the hospital, 160-170 pounds. (I'd actually like to lose a few pounds, since my stomach is a bit "chubby".)
My hair continues to grow back in, albeit quite slowly. It's often been stunted
by the chemo, and I have periods where it starts
falling out again. I figure that (barring any similar side- effects from the
upcoming radiation), it should start growing back a
little better in a month, or so.
June 4, 1999 (Fri): I had some chest X-rays and CT scans of my neck, chest and abdomen today. Provided the
radiology department is on the ball, I should hear/see the results next Friday,
when I go in for my next clinic visit. (The OSU Medical Center's radiology
department hasn't been too good at hanging onto my films before my doctors can
see them. Everything is computerized, so they can regenerate the "hardcopy"
films, if necessary, but this naturally imposes a delay on any
diagnosis.)
June 11, 1999 (Fri): The reviews are mixed, as they say. After a review of my CT scans, everything looks fine, except for what's left of the mass in my right lung. It showed signs of reducing in size between the CT scans from last Friday, and my previous set of CT scans. This would imply that it's not just scar tissue, since it appears to be reacting to the chemo I've been getting. So, while I'm done with the Rituxan infusions, I'll be getting a couple more sessions of CHOP. The idea is to get the small mass in my chest to a point where it's either invisible, or at least stable in size (implying that all that is really left is scar tissue). Then, I'll get another chest CT scan, and a gallium scan. Provided these scans are negative for signs of my lymphoma, I'll then get some radiation therapy for the right side of my chest, to make sure the last vestiges of the lymphoma are wiped out. The CT scans showed that the rest of my body (or at least the rest of my chest, abdomen, and neck) were clear.
My (blood) counts were pretty low, again, so I'm officially back on Cipro. Dr. Bender told me in no
uncertain terms that after the next two CHOP sessions, I
would definitely be put on Neupogen (the drug I have to
self-inject), and that I would be having labs (blood tests) twice a week. (The
Neupogen does no good once my counts are already low;
it's given to prevent them from falling too low while they're still [properly]
elevated.) Provided my blood counts have recovered sufficiently, my next CHOP session is scheduled for next Friday (June 18, 1999).
June 18, 1999 (Fri): While my blood counts were within
the acceptable range, my doctor decided to delay my CHOP
treatment for a few more days, since my counts were just above the lower end
of the range. I'm back off the Cipro and the "low-
bacteria diet", so I can eat pretty much whatever I want, again. We'll try
again next Tuesday (June 22).
June 22, 1999 (Tue): My blood counts were okay today, so we went ahead with my CHOP treatment. The adriamycin (Hydroxydoxorubicin -- the "H" in "CHOP") threatens cardio-toxicity after a cumulative dose of 450mg/m2, so I received another drug just prior to the adriamycin "push" which helps to lessen this effect, Zinecard. I'll get this again during my next (and hopefully really last) CHOP treatment. I start a week of self-administered Neupogen shots tomorrow.
Dr. Bender still seems to be somewhat pessimistic about
my chances of a complete recovery with the therapies I've received so far. All
I know is I feel a heck of a lot better than I did six months ago. We should
have a better idea as to just how well my therapies have done after my next
CHOP treatment, when I should get another chest CT scan, and a gallium
scan.
July 1, 1999 (Thu): I finished another week of Neupogen injections this past Tuesday (June 29) night.
The previous day, my blood counts were all fine. Today, my counts have
"bottomed out" once again, so it's back on the Cipro
(preventative antibiotic) and no fresh fruit/vegetables, until at least next
Tuesday (July 6). (I'm scheduled for blood tests on Mondays and Thursdays for
the next few weeks. Since next Monday is when OSU is observing Independence
Day, we have to delay Monday's test until Tuesday.) From what I was told, my
counts are already on their way back up, so hopefully I won't have to live
with the restrictions imposed by the low counts too much beyond next
Tuesday.
July 6, 1999 (Tue): As expected, my blood counts are
recovering. I'm not "out of the woods", yet, but I can lay off the Cipro, and I'm back to a normal diet, again.
July 8, 1999 (Thu): My counts fell back a few points, so
I'm back on the Cipro again, but I don't have to worry
about limiting my diet just yet.
July 9, 1999 (Fri): I noticed a bit of hair loss
yesterday, and put it off as another episode, like I experienced after my
last CHOP treatment. Today, it seems worse. The hair on my
head seems to be falling out pretty freely. I've also noticed facial hair loss
(which isn't necessarily all bad ... saves me from needing to shave if it's as
total as it was right after I was discharged from the hospital), and hair loss
from my chest. Time will tell how much more I'll lose.
July 12, 1999 (Mon): My WBC count dropped a bit, but my ANC actually inched back up a bit. I'm still on the Cipro, but my diet remains unencumbered.
The hair loss continues to be a problem. I wouldn't be at all surprised if I
lost what little I have left by the end of the week.
July 16, 1999 (Fri): No more Cipro for now. My WBC count is still on the low side, but tolerable (and rising). My hair loss seems to have tapered off, but there's not a whole lot left...to be expected with the chemo.
I had another clinic visit today. Over the past week, I've noticed some pain in
my lower back on the right side (near my kidney), which felt much like typical
growing-old-type muscle pain. Dr. Bender concurs, though
we'll be keeping an eye on it. I'm due for another CHOP
session next week, followed by yet another week of Neupogen injections. I have another chest/abdomen/pelvis
CT scan and a gallium scan
scheduled for early August.
July 20, 1999 (Tue): I was supposed to have my last CHOP treatment today, but my WBC count and
ANC were still borderline, so we're delaying for another
week.
July 27, 1999 (Tue): Things went pretty well today. I received my CHOP treatment as usual. During the infusion, we noticed a rash develop on the arm into which the IV was running. A little hydrocortizone injected into the IV and all was well within about 15 minutes. I start my next (and hopefully last) series of Neupogen injections this Thursday.
Final infusion count: Eight (8) rounds of CHOP, five (5)
rounds of Rituxan, and six (6) rounds of intrathecally
infused (via spinal tap) methotrexate.
July 28, 1999 (Wed): Well, I knew I was tempting fate always reporting that I was handling the chemo so well. I had a short bout of nausea this morning. This might also have been caused by the hydrocortizone they injected into my IV to clear up the rash I developed during the infusion. Ayway, I was fine five minutes later, and I'm tentatively trying breakfast. Here's hoping that's as bad as it will get.
I also noticed that the veins on the arm via which I had my CHOP are all red. I contacted Dr. Bender
about this, and since there wasn't any pain or tenderness, he wasn't too
concerned. He told me to keep an eye on it, anyway; it will probably disappear
on its own.
August 2, 1999 (Mon): The Neupogen is
definitely working. My WBC count is quite high, as is my ANC. My arm is a bit tender around the site where my CHOP was injected, but it doesn't seem to be anything worth
worrying about. The redness in the surrounding veins is almost gone.
August 3, 1999 (Tue): I had another set of CT scans this morning, and I was injected with the gallium fluid for my gallium scan this coming Thursday. I had to drink the usual yucky contrast. About 15 minutes before my CT scan, I was taken to a different area of the radiology department for my gallium injection. The technician was good enough to start an IV for me, so that I wouldn't have to go through a second needle-stick for my CT scan.
An unpleasant surprise came with the gallium injection. Part of the preparation
for the gallium scan involves "bowel preparation". For
the next couple of days, it looks like I need to stay near my bathroom, since
I've been supplied with three different laxatives that I have to take in that
time span.
August 4, 1999 (Wed): One of the laxatives I had to take was a small bottle of liquid. It was lemon flavored and carbonated. ("Citroma: The Sparkling Laxative"...whatever.) The first sip was pretty bitter. Ever since I went into the hospital, soda-pop hasn't tasted good. The best way I can describe it is that the carbonation seems to drastically reduce the sweetness of the syrup. What's worse is that this liquid isn't even sweetened with sugar, but saccharine, which is known to have a bitter after-tase. So, with the lemon flavor and the carbonation, this stuff was pretty bad. Other than the bitterness, though, it wasn't actually all that bad...until after the second sip. That's when the medicinal after-taste kicked in. (I'd almost prefer the barium contrast I have to drink for my CT scans over this stuff.) I managed to down the rest of the liquid, and took two of the four pills I was given. An hour later, I took the other two pills. With that, I was all done with the laxatives. About 20 minutes later, the lemon liquid started doing its job.
I can only hope that I won't have any more surprises tomorrow (like these laxatives were) when I go in for my gallium scan tomorrow.
There is some good news to report, though. I'm done with the Neupogen injections for the time-being.
August 5, 1999 (Thu): I was awakened this morning around 4:00AM with the typical lower-back pain I usually get when I'm on Neupogen. About 20 minutes later, I had this sudden urge to use the bathroom...can't imagine what that was from (NOT!). Anyway, after a total of two trips to the bathroom, I finally managed to get back to bed for another hour or two of sleep. I was up for a short time starting at 5:59AM...just long enough to deactivate my alarm. I was planning on getting up at 6:00AM, but I decided I could get done what I needed to and leave before 8:00AM, when I had planned on leaving for the hospital...no problems there.
I was due for some blood work today, so I decided to take care of that before my 9:00AM appointment for my gallium scan. The gallium scan is extremely boring. You have to lay down on your back motionless for two hours, while the scanner moves around your body. They make three passes with the scanner, one from head to toe, one spinning around your chest, and another spinning around your abdomen. The abdominal scan is sometimes repeated on subsequent days, since the gallium is being constantly excreted into the colon, and it can register as a "false positive". This is the reason for the "bowel preparation" for two days prior to the scan. Luckily, I was informed that a subsquent visit would not be necessary.
I got my blood work results, and was a bit dissappointed -- they'd fallen off
pretty drastically. I was disheartened to learn that I'd need to stay on the
Neupogen for three more days. As I write this, I'm
awaiting notification that the prescription is ready for me to pick up. (I
decided to wait at work, in my office, rather than head home.)
 | August 9, 1999 (Mon): The good news is that my WBC counts are back up, so I probably won't be going back on Neupogen anytime soon. The bad news is that, as of around 3AM this morning, I lost my apartment in a building fire. My landlord is arranging for alternate living accomodations. I'm leaving work presently to check back with my landlord to see how things stand. | |
August 13, 1999 (Fri): My clinic visit revealed that I still have some active lymphoma on the left side of my chest (probably only involving a single lymph node), but that the 2cm mass left over from the huge mass inside my right lung is probably just scar tissue. (This latter mass did not "light up" under the gallium scan.) We are going to attack what's left with radiation (starting next Wednesday, or so), and with any luck, that will be the end of it. Even if the radiation doesn't take care of the rest, we still have a peripheral blood stem cell replacement (PBSCR) procedure that will almost certainly do the trick. This procedure will only be necessary should the lymphoma persist through the radiation therapy.
My WBC count was back down again this morning, so I'm back on the Cipro and a limited diet for at least the next week.
I'm feeling a bit overwhelmed, given that I have to deal with not only my
health problems, but also cleaning up after I lost my apartment earlier in
the week to a fire. The biggest hurdle is deciding to either wash the clothes
I salvaged and hope for the best, or just pitching them and getting new
clothing. (Everything smells terrible, and I'm really loathe to even approach
it.) I have the weekend to figure out what to do, but I'm seriously leaning
toward starting completely fresh with new clothes.
August 16, 1999 (Mon): I decided to toss my clothes and
get new ones. The new apartment is starting to smell much better, now. With
the help of my Uncle Phil (Flip) and cousin Eric, I was also able to pick up
some self-assembled furniture, and a few small appliances.
August 18, 1999 (Wed): I met with my radiation oncologist for the first time today, Dr. Grecula. (The "c" is soft, as in "ice".) He performed a short examination (much as I have when I go in for my clinic visits), and went over the plan. Next Tuesday morning, I'm scheduled for my "simulator run", where they do all the calculations, aiming, and such. I should be all marked up with magic marker after it's all over, which is what they'll be using for aiming purposes during my subsequent visits.
I was apparently supposed to be reporting in for blood work twice a week, but I wasn't informed of this last Friday, during my last clinic visit. (I'm scheduled for Mondays and Thursdays -- I missed this past Monday.) I'm hoping that the blood test tomorrow will allow me to refrain from taking Cipro, or at least release me from the low-bacteria diet.
I now have most of my furniture assembled, and I hope to have the contents of
my apartment arranged the way I want before this weekend, when I'm planning on
having my computer and stereo equipment returned to me. I also have replacement
clothes hangers (thanks, Pris), so I'll be able to hang up the clothes that are
currently scattered about my apartment in bags.
August 19, 1999 (Thu): I had to have my blood drawn twice
today. After arriving at my office after the first draw, I had a phone message
waiting for me, requesting me to call the hospital. I was informed that the
first sample had clotted too much before it was tested. I returned to the
hospital on my lunch hour for the second attempt. I decided to kill two birds
with one stone, and I had my lunch at the hospital. (There wasn't anything
appetizing in the cafeteria, so I ate at Wendy's, which has an "outlet" in the
hospital.) Shortly after my return to the area where my blood was drawn, I was
happy to learn that my counts were sufficient to take me off the Cipro and the low-bacteria diet, as I'd hoped. While there,
I had my blood tests moved from Mondays and Thursdays to Tuesdays and Fridays,
since these days of the week just seem to work out better for me.
August 24, 1999 (Tue): The radiation simulation went pretty quickly... about 20 or
30 minutes. This was in huge contrast to the two hours of laying flat on my
back for the gallium scan. I also had a CT scan, but without the need for any contrast
injection/ingestion. Instead, they tape small wires on top of the (magic
marker) marks made during the radiation simulation. As
far as the marks go, I'm allowed to shower (and "encouraged to" as one of the
radiation technicians put it ), I just shouldn't rub the areas where the marks were
made. They'll be touching up the marks as needed. I start my radiation treatments tomorrow morning.
My blood counts are also slowly but surely on the rise. My ANC
values are right at the low end of the acceptable range. My total WBC count still needs a little work, but it too is
rising.
August 25, 1999 (Wed): A late night voice mail message from Dr. Grecula last night informed me that we'll be waiting until at least next Monday before we start my radiation treatments. He wasn't completely happy with my WBC counts. I'll still need to drop in from time to time over the rest of this week to have my "marks" retouched. I'm due for another blood test this Friday.
I stopped into The James today during my lunch hour to have my marks touched up before eating. They gave me a marker, so that I wouldn't necessarily have to head into the hospital anytime the marks needed retouching.
Not thinking at the time, yesterday I pulled a new laser printer from its box.
Last night after I got home, I started to feel some muscle pain in my lower
back. Today it's pretty bad. I can sit just fine, but when I get up to walk
around, it's pretty painful. I seem to manage this type of injury about once
per year, so I was about due. It should pass over the next two or three
days.
August 30, 1999 (Mon): I had my first radiation treatment today. My blood counts were tested
beforehand, and they continue to inch up. The treatment was pretty
straightforward, and not painful or anything. They did add a "road map" to my
chest just before they turned on the radiation,
though. This is actually an outline of the blocks used in between my body and
the radiation source, to protect various (internal)
parts of my body.
September 3, 1999 (Fri): I've had four radiation treatments so far, and to date, I haven't seen any side-effects. I just got a call from the Radiation Oncology department at The James that their machine is "down", and since next Monday is Labor Day, I won't have another treatment until next Tuesday. I do have to drop into The James this morning, anyway, for a blood test.
The blood test today showed that my blood counts are still inching their way
up, slowly but surely.
September 10, 1999 (Fri): I'm up to eight radiation treatments now. Yesterday, I started noticing a little trouble swallowing, but the discomfort is not yet bad enough to dissuade me from eating. I would liken it to the feeling you get when food almost goes down the wrong "pipe" on its way to your stomach. The radiation also seems to be irritating my lungs a little, and I'm coughing a little more than usual, bringing material up as I do so. (Dr. Grecula was made aware of this last Tuesday, Sep. 7, and he wasn't concerned as long as what I'm coughing up is clear or white.)
My blood counts were slightly depressed today, and I'm a bit concerned that
over the past two or three blood tests, my platelet count has fallen. I'm due
for another blood test next Tuesday, and Dr. Grecula is
supposed to examine me that day, too. I'll bring my concerns to him then, if
necessary.
September 14, 1999 (Tue): My blood counts were back up today, and my platelet count was also higher than last time. I'm not "out of the woods" yet, but as long as my counts continue to rise, I'm satisfied.
While I was at the hospital today, I picked up a prescription for some
numbing medicine for my throat. It's basically a combination of Maalox,
Benadryl, and what I recall (when Dr. Grecula told me
about it) as "Zylocane". I'm not sure about the last one, since it turns out
the concoction is also provided as an over-the-counter substance known as
"Magic Mouthwash II", and that's all that's on the bottle. I'm supposed to take
a tablespoonful about 15 minutes before I eat. If the pain doesn't get any
worse than it already is, though, I can probably live without the medicine, but
it's nice to know I have it if I need it.
September 17, 1999 (Wed): I had another clinic visit
today. It didn't really reveal anything I didn't already know. My blood counts
continue to climb, and my chest looks the same (via chest X-rays). My next
clinic visit is scheduled for October 15. Dr. Stanek
remarked that I looked prety good, and that he can't wait to see me after they
stop "beating me up".
September 21, 1999 (Tue): My blood counts were ever so
slightly diminished today. Dr. Grecula mentioned that
it was to be expected at this point, when he examined me today. I was quite
happy to learn that I only have two more radiation
treatments to go. Yea! I look forward to this Friday morning, when I can
actually shower normally and not have to worry about these stupid magic marker
marks.
September 23, 1999 (Thu): Yahoo! I'm all done with the radiation. I still have blood work twice a week, which
will last until at least Oct. 15, my next clinic visit. Provided everything
looks okay then, we'll go into "watch and wait" mode, and I'll only need to go
in for check-ups every three months, or so. I also have a follow-up visit with
Dr. Grecula in mid-November, but that shouldn't be
anything major.
September 27, 1999 (Mon): I found out this morning that
a former co-worker who was also fighting against cancer passed away this past
Saturday. Many of us from MSE dropped by her house this afternoon, and there
was quite a large turnout, from family and friends. Nancy will be missed, but
I'm sure she's in a better place, now.
September 28, 1999 (Tue): My blood counts were a little
higher today, compared to last Friday. Hopefully, they will continue to rise
to normal levels, now that I'm off the radiation and
chemo.
October 5, 1999 (Tue): My counts were about the same as
last Tuesday, when they were examined last Friday. Today, though, they were
a lot better. I've given up trying to predict what they'll do this Friday...
we'll just have to wait and see. My throat seems to be healed, and eating is
no longer a chore.
October 8, 1999 (Fri): My WBC counts
and ANC are a little higher, but several of my other factors
(e.g. red blood cell count, platelets, etc.) were a little lower. The lower
values didn't seem to be of any concern to the folks at the hospital,
though.
October 12, 1999 (Tue): My blood counts "flip-flopped"
today, so now my WBC count and ANC are
slightly lower, and my other factors are elevated. (My ANC level is still
in the low part of the normal range.) It will be interesting to see what
this Friday brings (when my next blood work is scheduled).
October 15, 1999 (Fri): The WBC counts and ANC were a little lower today, but still tolerable.
The big news is that we're now officially in "watch and wait" mode. (That means
we're watching for any signs of relapse, and waiting until the next checkup.)
I'm not scheduled for any tests until the middle of January. It will be great
if I can really go that long without needing to visit the hospital again.
Unless something dire arises, this page will (hopefully) be updated much less
frequently.
November 18, 1999 (Thu): I had a follow-up with Dr. Grecula today. He listened to my lungs and heart,
and checked my lymph nodes, and pronounced that everything looked normal. I'll
be seeing him again next March.
January 8, 2000 (Sat): I endured yet another CT scan yesterday. The technician who handled it reminded
me of what to expect with the IV contrast, including a metallic taste and
warmth. I don't remember ever hearing about the warmth before, nor had I
experienced it before. (In fact, I usually do a bit of shivering during the
scan ... probably due to the refrigerated contrast they have me drink
beforehand.) Anyway, I experienced the metallic taste, as usual, and I also
definitely felt the warmth the technician mentioned.
January 14, 2000 (Fri): My clinic visit today was pretty
uneventful. In other words, so far, so good. I'm scheduled for another clinic
visit in mid-April, preceded by another CT scan and the
dreaded gallium scan. (In case you missed the events
preceding my previous gallium scan, suffice to say
the preparation is the dreaded part.)
January 16, 2000 (Sun): Dr. Stanek
sent me an E-mail message yesterday in response to a message I sent him with
the URL for this Web page. Besides the URL, I requested information as to the
results of my last CT scan. He apologized for not
mentioning it during my clinic visit, and reported that everything looks fine:
"...no evidence of tumor." The gallium scan is
considered to be a more definitive test, though, so I'll have a better
picture of how things stand in April.
March 20, 2000 (Mon): I had a follow-up examination with
Dr. Grecula today. Everything looked fine to him. I go
back to see him in August.
March 23, 2000 (Thu): I had something done today that I haven't had done since February of last year, and back then it was really out of necessity. Back then, I had just been discharged from The James, and my hair was falling out all over. To try to avoid shedding all over my apartment, I decided to have my hair cut. I was left with about a quarter of an inch, and after my subsequent CHOP treatments, I eventually lost all my hair. It started growing back noticeably last October, but it came in really curly. (I previously had fairly straight hair, which only tended to get somewhat wavy when it was getting time to be cut.)
Today I had my first haircut in over 13 months, and I have to say it was quite
a relief. My hair looks almost the same as it did before this long episode
began, albeit with a few more gray hairs. ( ) I can also still see some evidence
that it's going to take a few more cuts, before it loses its recent tendency
to curl. As long as I keep it fairly short, though, it's hardly noticeable.
March 28, 2000 (Tue): My next clinic visit with Dr. Stanek has been pushed back to late April. I'm still
scheduled for a CT scan and a gallium scan next week.
April 4, 2000 (Tue): I received my gallium
injection today, in preparation for my gallium scan
this coming Thursday. The nuclear medicine technician inserted an IV catheter
into my right arm. He injected the gallium solution into this, and left it
there so that my CT scan this afternoon wouldn't require
starting another IV. (The image may look misleading. The end of the catheter,
[closer to my sleeve] where it actually enters my vein, is blue plastic. The
other end is clear, but has a little dried blood in it. The blue plastic and
dried blood may give the [false] impression of a bruise. The whole thing is
covered with semi-transparent tape. The tape is what's pulling on the
surrounding skin, perhaps giving the impression of a bump or two.)
I asked the technician if it would be okay to refrigerate the carbonated
laxative ("Citroma") provided as part of the "bowel preparation" for the gallium scan. He said it was encouraged, as they have
heard from previous patients that it helps with the taste. I found it
interesting that the instructions which are included in the "bowel preparation"
kit have been modified since my last experience to
actually direct the patient to refrigerate the Citroma.
April 6, 2000 (Thu): I managed to get through all the laxatives yesterday, about as easily as I did the last time. Refrigerating the Citroma didn't really help, but I found that if I drank it as fast as I could, I didn't dwell on it nearly as long. (The last time, I would basically take a sip...cringe...wait 'till I could bear the after-taste...sip...cringe...etc.)
When I was called by the nuclear medicine technician in the waiting room the first time this morning, it was only to let me know that they were having equipment problems, and that they expected to have something working after about 45 minutes. 45 minutes later, they had me starting my head-to-toe scan. After that, they would either continue the other two sweeps with the same scanner, or move me to another scanner. (They were having trouble with the sweeps around the body.) As it turned out, they managed to get the system functioning so I didn't have to switch machines.
I returned home briefly and while there, they called me to let me know that I
would need to report again tomorrow (Friday) morning, for yet another scan.
This is probably (hopefully) just due to some gallium in my bowel which
registered as a false positive. I won't have to worry about any special "bowel
preparation", though, apart from not eating anything between the time I awaken
and the procedure (which is scheduled for 8:00AM).
April 7, 2000 (Fri): Argh! They need to perform yet another scan next Tuesday.
This is getting frustrating, and even a little bit disconcerting, now. What's
worse, they were going to give me another bowel preparation kit. Luckily, the
technician said that if I promised to eat lightly on Monday, and drink plenty
of fluids, we could forego the bowel prep. No problem! I'll drink all the
water you want me to, if I can avoid that Citroma!
April 11, 2000 (Tue): As instructed, I ate pretty lightly
yesterday, and drank plenty of fluids. After the scan today, I was not called
back in, so I guess that means the scanning is finally over. (...For now,
anyway. They could always call for another gallium scan
sometime in the future, I suppose.) Now I just have to wait until April 28 for
the results.
April 28, 2000 (Fri): Well, there's good news and not- so-
good news. The not- so- good news is that the most recent gallium scan still showed some evidence of cancer on the
left side of my chest. The good news is that there was no other evidence of
cancer, and the abnormal mass in my chest may have even reduced in size since
my last gallium scan. It's my understanding that the
mass in question is only a centimeter or two in diameter, so if this reduction
in size can continue, that would be ideal. Anyway, I'm not due to head back
into the hospital until August, when I'll get another CT
scan, followed by a clinic visit about a week later, along with a visit
to Dr. Grecula.
June 4, 2000 (Sun): Today was the annual celebration of Cancer Survivor's Day over at The James. Survivors were encouraged to get their pictures taken, and then place their pictures on a large display made up to look like a bus. This was in light of the actual bus that COTA (Central Ohio Transit Authority) has "done over" to honor The James and cancer survivors. This (real) bus will be making the rounds in the Columbus, OH area for the next year.
I didn't see anyone I recognized, apart from a local television news reporter,
who was apparently covering the event for a story (and my sister, but then she
accompanied me there). We basically ate, then I had my picture taken, and we
left. Since we didn't know anyone there, that's about all we could
do.
June 16, 2000 (Fri): Last night I had a dream that most
of my hair had fallen out. I suspect, within the context of the dream, I was
reliving an actual experience, as opposed to going through a relapse of
alopecia (the technical term for hair loss). I recollect that I was watching
myself in my bathroom mirror, and noticing that I had a fair bit of hair in
my hand after passing my hand across my head. The amount of hair on my head was
akin to its state about half-way through my chemo
regimen. As alarming as this sounds, I can't really classify it as a nightmare,
since I wasn't particularly alarmed within the dream, and it didn't actually
raise me from my sleep. Even so, I could do without those kinds of reminders
about the past year, or so.
August 10, 2000 (Thu): I had another CT
scan a couple days ago. It went without a hitch, apart from being delayed
about 30 minutes, as the radiology department was pretty busy. I'm supposed to
see Dr. Stanek next Friday, Aug. 18, when I should be
informed as to the results of this scan.
August 14, 2000 (Mon): I went to see Dr. Aukerman today, for what I suspected was a flare up of my nasal polyps. He confirmed my diagnosis, and I am now taking a daily dose of Claritin-D 24, which is the allergy medicine Claritin, combined with a decongestant, in a single pill which works for 24 hours. I was also given a nasal spray, RhinoCort, which I also have to use on a daily basis.
(August 19, 2000) Since starting these medications, I am happy to report that
my nasal polyps have reduced in size dramatically, and I have acceptable
airflow through my nose, again. Hopefully, I will only need to be on this
medication through the end of summer, and perhaps into the early part of
autumn.
August 19, 2000 (Sat): Yesterday, I had my regular clinic visit with Dr. Stanek. I practically flied through the blood tests and examination, starting around 11:30AM and getting me out of the office around noon. All was not completely rosy, however.
My last CT scan showed a possible "hot spot" in my
upper right lung. Unfortunately, this was reported in the report of the CT scan of my neck, but the report for the CT scan of my chest was missing. I am awaiting word from
Dr. Stanek as to the results of my chest scan, which
should have more definitive information regarding this "hot spot". Dr. Stanek wasn't really too concerned about this (other
than being annoyed about the fact that the report for my chest scan was
missing), since he recalled I had presented with this symptom before. I'm
somewhat hesitant to dismiss this, though, since I think he may be recalling
the "hot spot" which showed up on both of my previous gallium scans, which presented on the left
side of my chest. As you can imagine, I'm quite anxious to have this
resolved.
August 21, 2000 (Mon): I saw Dr. Grecula this morning for my regular follow-up. Since last Friday, I've noticed actual pain in the upper-left side of my chest, off-and-on. I mentioned this, and when the resident who was accompanying Dr. Grecula on rounds listened to my heart, he mentioned that I had "...an S2 or S3 gallop." (This is from memory, so it may not be exact...it was definitely "an S-<number> gallop", though.) I recall that on my first clinic visit after being discharged from The James, an irregular heart beat was also mentioned, but I don't think the term "gallop" was ever used. At any rate, no one seemed too excited about it.
I also mentioned the snafu with my chest CT which was brought to light last Friday during my regular clinic visit. They checked on the computer system, and while there was definitely an order for a chest CT, there was no evidence that such a scan had been performed. It's looking more and more like the chest CT will need to be repeated in the near future. I'm still waiting to hear from Dr. Stanek, though, so I suppose my chest scan results could still turn up somewhere.
(Later) It seems that the problem was not a missing CT
scan of my neck, just a missing report of same. Apparently, the
radiology dept. has the films, and they're in the process of getting someone
to "read" them. I should know something concrete in the next day or
so.
August 27, 2000 (Sun): This past Wednesday, I heard from
Dr. Stanek's office that my chest CT
scan had been reviewed, and that it looked normal. The chest pains (I
reported on my last visit with Dr. Grecula) seemed to miraculously cease around the same
time. Perhaps the chest pains were just "anxiety pains". I'm not taking any
chances, though; if they should recur, I'm definitely going to make sure they
get checked out promptly and thoroughly.
September 30, 2000 (Sat): No news is good news.
November 30, 2000 (Thu): There's nothing like waiting
around for two-and-a-half hours for examinations by a couple doctors that
took a total of maybe ten minutes. At any rate, both doctors (Dr. Grecula and a doctor who was accompanying him on his
rounds) concurred that I seemed to be fine. What was especially interesting
was some information from the CT scans over the past
year, or so. I am still presenting with a small mass in my upper-right lung --
probably the remnants of the huge mass found on my original scans. Last August (of 1999), this mass was
measured at about 2.3cm by 2.3cm. This past April (of 2000), the mass had
reduced in size, and even this past August, it continued to show signs of
reduction, down to 2.0cm by 1.0cm. Here's hoping this trend
continues.
December 11, 2000 (Mon): I had another set of CT scans today. Everything went fine. I should find out
the results in a couple weeks.
December 23, 2000 (Sat): My clinic visit yesterday was pretty uneventful. My WBC counts were a little low, but pretty close to normal, and the doctor didn't even mention it. (I got a chance to look at the blood work report, myself.) As before, the radiology department omitted a report on my chest CT scan. Everything else looked fine, though, and Dr. Bender will call me when he finds out the results of my chest scan. Given my history, though, I'm not particularly concerned.
I checked into getting copies of my CT scans, so that I could post a few here. It turns out to be an awkward proposition, though. I got to see a few of them, and I don't really think they would be of much help, anyway. (You would need to be trained to read them in order to interpret them.) I'm going to see if I can get a couple chest X-ray copies, though, since even I could see "what's what" on these.
Happy Holidays!
Thanks to Dr. Bender, I now have "volume 1" of my various
radiology films (X-rays, ultrasounds, and CT-scans) in my possession. I have
to return them by my next clinic visit (in April). As soon as I can figure out
the best way to get some of them scanned, I'll post them here.
February 3, 2001 (Sat): Yesterday, I managed to scan a
few select X-rays and today, I included them in the timeline, above. I still
want to get one more scanned in, but the film used is thicker (and therefore
more opaque), so I have to come up with a different scanning
technique.
February 7, 2001 (Wed): I managed to get the last X-ray I
wanted scanned in today. While I was at it, I added a kind of slide show viewer
for the X-ray images, accessed when you click on any of the X-ray images
(JavaScript required). I also reformatted the timeline a bit.
April 9, 2001 (Mon): The CT scan went just fine, even if the amount of time between the point where I had consumed most of the contrast and the actual scan was a bit longer than I would have liked. (The contrast tends to get more and more disgusting the longer it's at room temperature. It's just barely tolerable when it's "fresh" out of the refrigerator.) Apparently, one of the scanning systems was down for a while, which had them backed up a bit. It was only a 30-minute delay.
I also dropped off the films that Dr. Bender signed out
for me. As I was waiting to get my CT scan, he passed by
me, presumably when he returned my films to radiology. We had a brief
conversation, where he confirmed that we must be close to another follow-up
checkup, since I was there for a CT today.
April 10, 2001 (Tue): My next clinic visit with Dr. Stanek has been moved up a couple days to next
Wednesday, 18-APR-2001. Apparently, he's going to be out of town the day the
visit was originally scheduled, Friday, 20-APR-2001.
April 18, 2001 (Wed): All of my CT
scans were actually ready and waiting today. The small mass in my
upper-right lung, which had shown signs of shrinking over the past couple
of years, has finally stablized in size, indicating it's probably nothing more
than scar tissue. Dr. Stanek was expressing his delight
as he described my original condition to a new nurse, and then saying things
like "Just listen to those lungs!" as he examined me. I go through what's
becoming "the usual" again in another four months.
April 27, 2001 (Fri): My check-up with Dr.
Grecula (originally scheduled for next Wednesday, 2-MAY-2001) has been
pushed back another week.
May 9, 2001 (Wed): I whipped right through my follow-up with Dr. Grecula, today. The nurse who called me to the examination room was looking right at me, but wasn't sure I was who I said I was. Apparently, she was going by a photo that was taken of me way back when I started my radiation therapy -- a picture of me with practically no hair.
Everything turned out fine during my check-up, and things seem to just keep
getting better. I won't have to return for a follow-up with Dr. Grecula until this November. That's a whole six (6)
months away, as opposed to the time span between previous radiation oncology
follow-ups, on the order of every four (4) months, or so.
August 10, 2001 (Fri): My
CT scan today was uneventful, as usual. I should know
the results next Friday.
The photo at left is what I looked like when I visited my parents this
summer.
August 17, 2001 (Fri): As I'd hoped, everything looked fine
at my clinic visit with Dr. Stanek today... so good, in
fact, that I don't have to go back again until next February(!).
September 19, 2001 (Wed): It's the first day of classes here at OSU for Autumn Quarter of 2001.
Everyone that can is encouraged to donate blood in this time of national
crisis. If you are a cancer survivor, you should wait five years after
receiving a clean bill of health from your doctor. For more information on
blood donation, click here.
November 14, 2001 (Wed): Another day...another year. (It's
my birthday.) My check-up with Dr. Grecula went pretty
much without a hitch, as long as you don't count the two-hour wait I had to
endure. I'll see him again next May.
Since my last visit with my oncologists, I've been presenting with a slightly
elevated BP (blood pressure). This was caught when I visited Dr. Aukerman late last year for some allergy medication.
Since then, I've been on what's known as an ACE inhibitor, Ramipril. Over the
Christmas holiday, I managed to catch a cold and the accompanying chest
congestion has lingered on. To treat this, I'm also on a Serevent inhaler.
Between my upcoming CT scans and my visit with Dr. Stanek in February, and the next appointment with Dr.
Aukerman (on March 4), I hope to have these issues addressed.
January 29, 2002 (Tue): Last week, I happened to catch the
tail end of a television news story that mentioned Rituxan, chemotherapy,
lymphoma, and survival rates. I contacted the news anchor who reported the
story, and thanks to his action, and the work from one of the station's health
reporters, I can now offer this
encouraging news. (It's especially encouraging for me, since I went through
treatment with CHOP and Rituxan back
before there were any real studies like this..)
February 9, 2002 (Sat): My CT scan
yesterday went without a hitch. What was encouraging was that my blood pressure
is lower. The last time I had it checked, it was 160-something over
90-something; yesterday, it was 140-something over 70-something. I should
know the results of the scans next Friday.
February 15, 2002 (Fri): Everything looked normal today at my clinic visit, including my CT scans from last Friday.
I confirmed today what I thought I heard Dr. Stanek
tell me at my last visit...that Dr. Bender had "moved
on." He's now working in Atlanta, GA. His replacement, more or less, is
Dr. Dan Cameron.
May 23, 2002 (Thu): My radiation oncology follow-up with
Dr. Grecula today went by without a hitch.
August 10, 2002 (Sat): I had a horrible experience during my CT scan yesterday. There were two failed attempts to get an IV going. (The third time is the charm, I guess.) During the first attempt, they actually had the IV inserted, and they didn't notice it had "blown" until after I'd received a good deal of contrast. I didn't notice too much swelling, and the technicians just sent me on my way and let me know that the contrast would eventually be absorbed and purged by my body. I was planning on getting a little food (since I hadn't eaten since breakfast) and then heading into work. The oral contrast was affecting my stomach much harder than usual, though, so I decided to forego the meal and work and just headed home. When I got home, I removed my shirt to take a closer look at my arm. As soon as the shirt came off, though, a closer look wasn't necessary to clearly see there was massive swelling in my arm. It looked similar to having a second biceps muscle on the inside of my elbow, and it was twice as large as my actual biceps muscle.
This morning, the localized swelling has been substantially reduced, but my entire right arm is definitely larger ("thicker") than it should be. Within another day or two, I expect it will be back to normal.
I guess the lesson to be learned here is to make sure if you are getting an
IV for anything other than saline, have the nurse/technician/whatever run a
little saline through the IV, first, to make sure there's good flow into the
vein. My two aborted IVs both showed a good "flash" (the small spurt of blood
produced when the IV reaches the vein), but they apparently both blew almost
as soon as material was injected.
August 16, 2002 (Fri): My check-up today went without a
hitch. Dr. Stanek was on medical leave (as he was at my
last clinic visit), and so a Dr. Thomas Lin has
been seeing me. He started throwing around the "c-word" a couple times
today (that's "cure" ). My next visit won't be for another seven (!) months
and if everything goes according to plan, we'll be extending the time between
visits to a whole year.
November 21, 2002 (Thu): ...Check-up with Dr. Grecula today. ...Five minutes with a resident, five
minutes with an attending (Dr. Grecula) and an hour of waiting. In other
words, ...the usual. No problems.
February 12, 2003 (Tue): Early last October, I was diagnosed with a kidney infection. We don't have a handle on what was the immediate cause, but tests since then have revealed that I'm somewhat diabetic. In particular, I have Type II diabetes, but it appears to be in check with some slight modifications to my diet.
While I was hospitalized during my first round of chemo, one of the doctors who was tending to me mentioned that there's around a 30% chance of persons undergoing chemotherapy of the type I had (CHOP) to develop Type II diabetes later. What's more, since my pancreas was involved with the NHL, that could have only added to the odds that I would develop some form of diabetes.
We're monitoring my blood glucose levels on a monthly basis, or so. With any luck (and as long as I keep an eye on my sugar/starch intake), I should be able to get by without needing to treat the diabetes with medication.
Update: Dr. Dull has since backed off
from her original diagnosis, and refers to me as only "glucose intolerant."
Apparently, I also need to watch out for fatty foods, since my "bad" (LDL)
cholestorol is high.
March 7, 2003 (Fri): My CT scan today
went much better than the last time. I should know
the results next Friday.
March 11, 2003 (Tue): There was a scheduling error during my
last follow-up appointment with Dr. Stanek. My follow-up
is now scheduled for this Thursday (13-MAR-2003).
March 17, 2003 (Mon): Happy St. Patrick's Day! Last Thursday's follow-up visit went exceptionally well. First, after a bit of mutual confusion between the staff and myself, we finally figured out that no lab work was ordered for me, so I didn't have to endure any needle sticks. (At this point, it's no big deal anymore, but still...) I was also pleased to find my blood pressure was doing quite well at 120/70. I heard that my last CT scan looked fine. With all the good news, the clincher was that I (hopefully) won't have to go back for another scan or check-up at the medical oncology unit of the James until next year!
The past few follow-ups have been with a different doctor, Dr.
Thomas Lin. Dr. Stanek had been out on medical leave
for at least a year, but since his return, he's taken on more of a role as a
consultant.
May 22, 2003 (Thu): I breezed through my check-up with Dr. Grecula. As was done at my last medical oncology
check-up, radiation oncology has extended the time between my visits. My
next visit isn't scheduled until September of next year.
July 31, 2003 (Thu): While it isn't related to NHL, I thought some might be interested to know that last Thursday (24-JUL-2003) I underwent a Functional Endoscopic Sinus Surgery (FESS) as an outpatient procedure. This was anticipated to take between 60 and 90 minutes, but I ended up in the operating room for about four (4) hours. The doctor reported that he just kept finding more abnormal tissue (nasal polyps) to remove. The nasal polypectomy I had in the late 80s was not anywhere as thorough as this procedure. The fact that they used an endoscope this time around means that they should have been able to cover many more areas that they couldn't under the old method. I am hopeful that this will be the last time my nose will need to be "surgically invaded."
The worst part of the whole process was that a day after the surgery, my neck
and lungs were quite sore. I forgot to check with the doctor about this, but
I'm pretty sure this was because I was "intubated" and placed on a ventilator
during the surgery. As it turned out, I needed the prescribed pain pills more
for this pain than for my nasal pain. The neck and chest pain only lasted about
24 hours, or so. Now, I only have a little lingering pain above my front top
teeth. I don't believe I'll need to use the pain pills much longer, if at
all.
November 14, 2003 (Fri): ...The big four
oh. That is, I'm 40 years old today. My nose has healed quite nicely,
and there's no evidence of polyp re-growth.
January 12, 2004 (Mon): It's almost here...
March 10, 2004 (Wed): Everthing looks normal from my CT scan last week and my blood work today. I will have to
undergo a yearly CT scan and clinic visit for the next two or three years.
Beyond that, assuming everything is still normal, I will finally be able to go
without the CT scans. I have also been given the green light to donate blood,
if I wish.
September 29, 2004 (Wed): The more attentive of you may have noticed that last week, the date for my radiation oncology follow-up changed from Sep. 23 to today. No, you weren't imagining it...I forgot my appointment. Luckily, they were able to reschedule for today.
Everything looked good today. I go back in one year.
March 16, 2005 (Wed): My CT scan last week was a little different, since I didn't have to drink the usual white oral contrast. Instead, I was offered clear contrast mixed with either citrus or raspberry (as I remember it) Crystal Light. Since it wasn't as thick as the white stuff, it was a little easier going down. I also didn't experience anywhere near the amount of gas I did with the white contrast.
My clinic visit today didn't reveal anything out of the ordinary, which is good. I can only hope my visit in September with my radiation oncologist goes as well.
September 29, 2005 (Thu): As seems to be typical, my visit to
Dr. Grecula lasted about two hours, but the
examinations only took about 10 minutes. I was first examined by an intern, and
then later by Dr. Grecula. Nothing out of the ordinary was discovered.
More to follow...
With my last clinic visits, both my medical oncologist and radiation oncologist have left follow-ups to my regular family doctor. That means no more CT scans or other scheduled visits to the James. In other words, I'm essentially cured! Here's hoping this page now remains static.
For information on non-Hodgkin's lymphoma, check out the Lymphoma Information Network.
If you are planning on cutting your hair (in preparation for chemo, or any reason), you might want to contact Locks of Love, which "...is a non-profit organization that provides hairpieces to children across the U.S. under age 18 suffering from long-term medical hair loss."
Note: In case you're wondering what I use to manage this page, I do all my Web
design "by hand". That is, I don't use any tools like FrontPage, GoLive, etc.
Instead, I just use a text editor and enter "raw" HTML. While this opens up
the possibility of user error, I believe this is more than offset by the gains
in absolute control of content. (Yeah, I'll admit it -- I'm a control freak.
)