Highlights
I had a particularly rough time with chemotherapy, as I encountered some of the rarer side effects. Most testicular cancer patients have a much easier experience with chemotherapy. Nevertheless, this cancer diary will contain a lot of useful information, even for patients who aren't being treated with chemotherapy.
Age at diagnosis: 36 years old
- 05-01-2003: Testicular mass detected.
- 05-16-2003: Ultrasound confirms testicular cancer.
- 05-21-2003: Orchiectomy.
- 05-26-2003: Pathology identifies the cancer as pure seminoma.
- 05-30-2003: CT scan identifies three nodal masses, indicating stage III.
- 06-13-2003: Post-orchiectomy semen analysis normal, with sperm concentration of 45 million per ml, forward progression 67%, activity 2-2++, round cells 0-1 million/ml, and agglutination 0%.
- 06-17-2003: First day of first cycle of 3BEP chemotherapy.
- 06-23-2003 through 06-29-2003: Hospitalized for severe nausea and abdominal pain.
- 06-24-2003: ERCP and x-rays identify pancreatitis and gall stones.
- 06-25-2003: Gall bladder removed laparascopically.
- 07-02-2003: PET scan was inconclusive because the bone marrow responded very strongly to the neupogen, leading to the possibility of a false positive.
- 07-14-2003: First day of second cycle of 3BEP chemotherapy.
- 07-22-2003 through 07-24-2003: Hospitalized for severe nausea, severe abdominal pain and bone pain.
- 08-01-2003: Diabetes diagnosis, likely caused by pancreatitis and decadron.
- 08-05-2003: First day of third cycle of 3BEP chemotherapy.
- 08-07-2003 through 08-12-2003: Hospitalized in an attempt to control the nausea and abdominal pain before it occurs.
- 08-21-2003: Last day of chemotherapy.
- 09-09-2003: Second CT scan shows that the nodal mass adjacent to my heart has disappeared and the other two nodal masses have decreased in size. The larger of the two has shrunk from 3 cm to 1 cm.
- 10-08-2003: Second PET scan shows no evidence of FDG avid malignancy.
- 10-16-2003: Surveillance phase begins.
- 11-13-2003: CT scan shows possible metastases to the lower right lobe of the lung.
- 11-19-2003: PET scan followup to the CT scan shows no evidence of disease.
- 01-21-2004: Testicular Ultrasound shows contralateral testicle unchanged.
- 01-21-2004: Tumor markers are all normal.
- 01-21-2004: CT scan shows no sign of metastatic disease or disease progression.
- 03-23-2004: Tumor markers are all normal.
- 03-23-2004: CT scan shows no sign of metastatic disease.
- 07-06-2004: CT scan shows no sign of metastatic disease.
- 07-06-2004: Semi-annual ultrasound shows contralateral testicle unchanged.
- 07-16-2004: One year post-chemotherapy semen analysis subfertile, with sperm concentration of 16 million per ml, forward progression 69%, activity 2+-2++, round cells 0-1 million/ml, and agglutination 0%.
- 11-08-2004: Tumor markers are all normal.
- 11-08-2004: CT scan shows no sign of metastatic disease.
- 01-06-2005: Semi-annual ultrasound shows contralateral testicle unchanged.
- 03-14-2005: CT scan shows no sign of metastatic disease.
- 07-26-2005: Semi-annual ultrasound shows contralateral testicle unchanged.
- 09-19-2005: CT scan shows no sign of metastatic disease. Incidental findings of gynecomastia.
- 12-22-2005: Semi-annual ultrasound shows contralateral testicle unchanged.
- 02-13-2006: CT scan shows no sign of metastatic disease.
- 08-07-2006: Tumor markers are all normal.
- 08-07-2006: CT scan shows no sign of metastatic disease.
- 08-08-2006: Semi-annual ultrasound shows contralateral testicle unchanged.
- 12-21-2006: Tumor markers are all normal.
- 12-21-2006: CT scan shows no sign of metastatic disease. Possible nonfunctional neuroendocrine tumor of the pancreas. Same 1 cm mass was apparently present on my original staging CT scan, but missed by the radiologist.
- 1-4-2007: Abdominal MRI confirms the presence of a 1 cm mass at the tail of the pancreas. The MRI rules out adenocarcinoma of the pancreas, but cannot differentiate between neuroendocrine tumor of the pancreas and metastasis from the testicular cancer.
- 2-19-2007: Semi-annual ultrasound shows contralateral testicle unchanged.
- 2-19-2007: Total testosterone levels below normal, but free testosterone, FSH and LH all normal.
- 3-9-2007: PET-CT scan shows no sign of FDG avid malignancy.
- 5-14-2007: EUS-FNA biopsy of mass at tail of pancreas.
- 6-21-2007: Dedicated CT scan of the pancreas finds a second 1.5 cm mass in the body of the pancreas in addition to the 1.0 cm mass in the tail of the pancreas. Review of prior CT scans finds the second mass present as well and stable in size.
- 7-24-2007: Semi-annual ultrasound shows contralateral testicle unchanged.
- 7-26-2007: CT scan shows no sign of metastatic disease. Two pancreatic lesions are unchanged in size.
- 8-8-2007: Second EUS-FNA biopsy of mass at tail of pancreas.
Detailed Chronology
| May 1, 2003 (Thursday) |
I noticed some anomalies involving my right testicle
during my monthly testicular self-exam:
I wasn't in any pain. I spent a few hours doing some research on the web, and found only four possible causes of a testicular mass: epididymo-orchitis (infection), spermatocele (outpouching of tissue around the epididymis), hydrocele (fluid around the testicle), and testicular cancer. My symptoms were most consistent with the latter.
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| May 3, 2003 (Monday) |
I told my wife about my suspicions, and that I'd be seeing the doctor
on Monday. The timing is rather bad, coming about two weeks after the
birth of my son. My wife still has severe back pain from the delivery,
and is confined more or less to the nursery until she
recovers. Currently, I'm waiting on her hand and foot, since she
can't shuffle more than 15 feet and can't go up and down stairs.
The
doctor prescribed anti-inflammatory drugs for her, so hopefully she'll
recover by the time we have to switch roles.
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| May 5, 2003 (Monday) |
My doctor confirmed the presence of a testicular mass. He also
threw in a prostate exam, finding that my prostate was normal. He had
me give urine and blood samples (to test for signs of infection) and
scheduled me for a testicular ultrasound on Friday, May 16.
My doctor demonstrated a reluctance to speculate about the diagnosis, beyond stating that it was a testicular mass. Strictly speaking, he should have assumed that it was testicular cancer until proven otherwise, and scheduled the ultrasound with greater urgency. He should have called various hospitals and labs until he found one that could conduct a testicular ultrasound the same day, instead of forcing me to wait two weeks. In hindsight I probably should have gone to the emergency room instead of my regular doctor. This would have yielded a much quicker diagnosis.
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| May 16, 2003 (Friday) |
By the time of my ultrasound, the testicular mass had doubled in size,
and was about the same size as a normal testicle.
The ultrasound is the exact same device they use for looking at a fetus in the womb. They use the same kind of goo too. I took a shower after getting home to get the goo off, since a wet paper towel at the hospital didn't do much good. During the ultrasound, the technician confirmed that the testicular mass was solid, meaning that it was a tumor. I asked for and received a copy of the ultrasound images, which turns out to have been a very smart move, as I was able to bring them with me when I saw a urologist. The official report on the ultrasound was not available until mid-morning on Monday, May 19.
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| May 19, 2003 (Monday) |
My doctor called with the results, confirming the presence of a solid
tumor. I asked him to fax me a copy of the ultrasound report. In
addition to the tumor, the report showed bilateral microlithiasis,
something my doctor forgot to mention.
I called and arranged for an appointment to see Dr. Musmanno, a urologist, the same day. Dr. Musmanno confirmed that it was testicular cancer, showing me on the ultrasounds where the tumor had taken over about three-quarters of the testicle. He also indicated that the fact that the tumor and the testicular mass showed varying densities was a potential sign of a non-seminoma. My urologist said that it was urgent to remove the cancerous tissue within the next 24-48 hours, and scheduled me for an orchiectomy at 9 am on Wednesday, May 21. I had a new version of my will notarized, along with a healthcare power of attorney and other documents. I had been working on a new will anyway, because of the birth of my son, but the diagnosis gave it a heightened sense of urgency.
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| May 20, 2003 (Tuesday) |
I went in to the hospital for pre-operative testing. They took blood
and urine samples, as well as a chest X-ray. Dr. Musmanno didn't try
scheduling me for a CT scan that day, since he didn't want to risk
delaying the orchiectomy.
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| May 21, 2003 (Wednesday) |
My orchiectomy was scheduled for first thing in the morning at West
Penn Hospital. My wife drove me there, since I would not be able to drive
for three weeks after the operation.
It's kind of interesting that the hospital has only one bathroom with a changing table, and it is too high for most women to use. So my wife changed my son on the floor in the ambulatory surgery waiting room. You'd think that a hospital would have changing tables in more of its bathrooms. After changing into the hospital gown (actually two gowns, one to cover the front and one to cover the rear), I got onto a gurney in a curtained waiting area. Various nurses and the anesthesiologist came to take my vitals, hook me up to an IV, and ask questions about allergies to medicines and anesthesia. They told me my chest X-rays were clear. Dr. Musmanno also came to see me before the operation. They gave me a sedative through the IV and wheeled me into the operating room, where they put me under with general anesthesia. During the orchiectomy they make a three-inch horizontal incision in the abdomen just below the belt line. They use it to remove not only the testicle but also some of the plumbing connected to it. This prevents the cancer from contaminating adjacent tissue, and also allows the pathologist to determine how much the cancer has spread. One thing doctors never seem to tell you before an operation (shouldn't this be part of informed consent?) is the fact that they will shave off any hair in the operative area. The pubic hair is very prickly as it grows back. I woke up in the recovery room with a big bandage on my abdomen and a pack of ice. Dr. Musmanno said the procedure went very well, and that the tumor appears to be a seminoma externally. Of course, we won't know for certain until we get the pathology report. After making sure I could still urinate, they discharged me at 3:15 pm with a prescription for painkillers (Oxycodone). For the next two days I had to keep ice on the incision and scrotum to keep the swelling down, changing the ice every 15-20 minutes. The painkillers weren't very effective, only taking the pain down a notch or two. The bags of ice were much more effective. Since the ice was rather cold, wrapping it in a paper towel helped. The pain and the painkillers interfered with my ability to concentrate. One thing they should include in the discharge instructions is to avoid laughing. Laughing is excruciatingly painful. My wife gave me a large container of Poppycock, not realizing the humor inherent in the name. My prescribed pain medication ran out on May 24, 2003. My doctor told me to take extra strength Tylenol when I ran out of the other pain medication. But the Tylenol was completely ineffective at controlling the pain. His other suggestion was to put a bag of ice wrapped over the incision area. This worked, controlling both the pain and the swelling. A bag of frozen peas or corn wrapped in a paper towel worked best, since it could be easily molded to fit the abdomen. Visually, the scrotum looks much like it did before, only with a little less stuffing. My underwear still fits well.
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| May 26, 2003 (Monday) |
The pathology report found that the tumor was a high grade
malignant seminoma with spermatic cord invasion. The tumor
involved the testicle, extending into the epididymis and
up into the spermatic cord. (The largest tumor dimension was 3.5
cm. The dimensions of the tumor in the testicle was 3.5 x 3.4 x 3.0
cm. In the epididymis the dimensions were 3.0 x 1.7 x 2.0 cm. In the
spermatic cord, the dimensions were 1.5 x 1.4 x 1.4 cm.) But it appears to not have
gone beyond the spermatic cord, as the spermatic cord
margin was free of neoplasm. There was also no sign of
neoplasm in the blood vessels or lymph vessels next to
the tumor, nor in the tunica vaginalis (the outer layer
surrounding the testicle).
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| May 27, 2003 (Tuesday) |
I find it kind of amazing that people expect me to be embarrassed or
emotional about the cancer or the orchiectomy. Yes, I have cancer, and
yes, I now have only one testicle, and yes, there's a good chance I
may die. So what? Will running around like a
headless chicken cure the cancer? Worrying won't accomplish
anything. Educating myself about testicular cancer
and treatment options is the best use of my time. I prefer to be
pragmatic and rational about it.
Incidentally, the bandages around the incision itch a lot, as does all the hair growing back. The end of each hair is like a little pin, pricking my skin. Changing the bandages helped a little. After the steri-strips from the orchiectomy came off, I tried using a half dozen regular bandaids, since there was a small amount of bleeding every time the scabs cracked. This didn't work well. What worked much better is an adhesive pad, like the 3M Medipore +Pad (brand name "Nexcare"). The bandage part is 1" x 2-3/8", which is too short to cover the full length of the incision. But if you cut off the end of one pad and overlap it with the end of another, it works well.
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| May 29, 2003 (Thursday) |
I called my urologist because I felt what I thought
was new growth, and because I had lost six pounds since the day after
the operation. Dr. Musmanno wasn't available, so I saw Dr. Sholder
instead. Like Dr. Musmanno, Dr. Sholder has very good bedside manner.
Dr. Sholder had me come in for an exam. The "new growth" was
actually the sutures at the bottom of the scrotum, along with normal
fluid buildup. The weight loss was also normal after an operation. He
said that cancer patients often become concerned about every lump they
feel, and that I should not hesitate to call Dr. Musmanno if I have any
concerns.
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| May 30, 2003 (Friday) |
I went to the hospital for CT scans of my pelvis, abdomen, and chest,
with and without contrast die. As with the ultrasounds, I asked for
and received a copy of the CT scans.
They made me drink two quarts of
a milky white barium sulfate solution. The berry flavor barely masks
the chemical taste, and does nothing about the texture. I drank so
much of the stuff that I was full to the gills. They also hooked me up
to an IV for intravenous contrast die (120 cc of Optiray 320). The nurse jabbed the needle
through the nerve on the way to the vein, causing intense extreme pain
to my thumb and index finger. The pain went away after about 5
minutes. During the CT scan itself I felt very hot, the way a piece of
food must feel when it is being nuked in a microwave. About an hour
after the CT scan I had massive diarrhea, with a considerable amount
of liquid coming out all at once. Luckily I was near a bathroom at the
time.
I looked at the CT scans afterward. Although I could identify various organs (heart, lungs, intestines, spinal cord, kidneys), I was unable to determine whether they were normal or abnormal. So I will just have to wait until my appointment with Dr. Musmanno on Monday.
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| June 2, 2003 (Monday) |
I scheduled a dentist appointment for the morning before my
appointment with Dr. Musmanno. This was partly because I had heard
that it is a good idea to have complete dental work before starting
chemotherapy, as chemotherapy patients are more prone to mouth sores,
bleeding and infection. Also, when they intubated me during the
operation, they chipped some bonding agent off of one of my lower teeth.
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| June 2, 2003 (Monday) |
I saw Dr. Musmanno for a follow-up appointment to examine the incision
area and my recovery, and to review the CT scans and talk about a
treatment plan.
The incision is healing nicely. There's a raised ridge of tissue under the incision -- the so-called "healing ridge". Aside from that, the swelling has gone down. Dr. Musmanno says that I can drive a car again. The radiologist's report said that the CT scan found three tumors in lymph nodes, two in the chest and one in the abdomen:
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| June 2, 2003 (Monday) |
Dr. Barsouk reviewed my records, took a look
at the CT scans, and pulled in a radiologist consult on the CT
scans. He confirmed that it is stage III testicular cancer. My
chemotherapy is scheduled to begin on Monday, June 16. The only
variable at this point is whether it will be 3 cycles of BEP
chemotherapy (BEP = Bleomycin, Etoposide, and cisPlatin) or 4 cycles
of EP chemotherapy. 4EP is thought to be about as effective as 3BEP
for good risk patients, but with less toxicity. Dr. Barsouk is leaning
toward 4EP, but we won't make a decision until June 16. I will read
everything I can find concerning treatment of stage III testicular cancer.
He's scheduled a pulmonary function test in case I decide to go with 3BEP.
I will also have a PET scan and do sperm banking.
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| June 3, 2003 (Tuesday) |
First sperm banking appointment. After I
filled out several forms and they
drew blood for viral testing, they showed me to a collection room. No
videos, just a few magazines.
Very clinical atmosphere, with
disposable antiseptic pads for the chair and the same type of
collection bottle they use for urine samples. The room must have been
a walk-in closet at some point, because there were still boxes of
stationery supplies in one corner. The task isn't as easy as it might
seem, because one must catch the ejaculate in the collection
bottle. You try walking, talking, patting your head and rubbing
your tummy at the same time. It also doesn't help that the hair has
started growing back like hundreds of tiny needles (they shave you for
the orchiectomy). I called later and they
told me the sample produced 4 vials. Since the goal is 18 vials, I
will need the remaining 4 appointments. The appointments are separated
by at least 2 and no more than 5 days for optimum sperm quality.
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| June 3, 2003 (Tuesday) |
My urologist is calling Indiana University to
get a consultation on my case. Stage III Seminoma is actually quite
rare, and they should have more experience treating this type of
testicular cancer. He believes that it might be beneficial
for me to undergo radiation therapy in addition to chemotherapy. He
will also talk to my oncologist about whether a head CT scan is
necessary.
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| June 4, 2003 (Wednesday) |
My urologist says that the folks at Indiana
University do not recommend radiation therapy in conjunction with
chemotherapy. They only typically recommend it for stage II
cases. They say that either 4EP or 3BEP chemotherapy is recommended,
and that I might want to lean toward 4EP because of the lower
toxicity. He also said that unless I'm experiencing neurological
changes, there's no need for a head CT scan, but that he would
schedule it if I need it for peace of mind. (Very punny!)
My son has been smiling for weeks, but this is the first time he smiled when I wasn't holding him, so I could take his picture.
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| June 4, 2003 (Wednesday) |
Some colleagues asked for my favorite
charity. It is the
Center for Excellence in Education,
a tax exempt 501(c)3 education foundation. Donation information
can be found on the
Get Involved
page.
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| June 5, 2003 (Thursday) |
Called 1-800-4-CANCER (1-800-422-6237) and
ordered some of the American Cancer Society's free booklets on cancer
treatment.
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| June 5, 2003 (Thursday) |
I sent email to Dr. Einhorn at Indiana
University with questions about the relative effectiveness and
toxicity of 4EP vs 3BEP. 3BEP is the standard treatment, but 4EP is
offered as an alternative to avoid the toxic effects of
Bleomycin. There is a study by Bajorin, Bosl et al that suggests that
4EP is as effective as 3BEP with reduced toxicity. But I could find no
independent study that confirmed this. In fact, I found three studies
that shed doubt on this result. Dr. Einhorn responded right away that
Culine had presented a paper this week at ASCO showing a cure rate of
96% for 3BEP and 92% for 4EP, with 5 3BEP deaths and 10 4EP deaths. He
also noted that he feels that 4EP is far more toxic than 3BEP because
of "cumulative platinum related neurotoxicity, anorexia, nausea, and
ototoxicity as well as the small risk of leukemia with etoposide at
higher total dosage". He also noted that they almost never see
patients with Raynaud's Phenomenon and that it is not certain that
Bleomycin is the culprit. I was originally leaning toward 3BEP and
this reinforces that inclination. Unless the pulmonary function
testing raises an issue or my doctors can convince me otherwise, I'm
going to go with 3BEP.
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| June 5, 2003 (Thursday) |
My beta-HCG levels are 37 mIU/ML
as of June 2, 2003, down from 156 mIU/ML on May 20, 2003. The latter
was before the orchiectomy and the former after. The half-life of
beta-HCG is 24 to 36 hours, meaning that beta-HCG should return
to normal about a week after surgery. Normal levels are less than 5
mIU/ML. The fact that the levels are dropping is a good sign. However,
the fact that they are still above normal is probably an indication
that the other three tumors are still producing beta-HCG. This is good
news, because it means we can use beta-HCG levels as an indication of
the cancer's response to treatment.
Beta-HCG levels are also elevated during pregnancy, typically reaching 10-50 mIU/ML in the week following conception, and peaking at 288,000 mIU/ML about two months after conception. Home pregnancy tests typically signal a result when beta HCG levels are at least 25 mIU/ML (e.g., the ept test requires 40 mIU/ML, Clearblue Easy 25 mIU/ML, and Confirm 25 mIU/ML). Since my beta-HCG levels were 37 mIU/ML, I was curious whether they were high enough to be measured by one of those home pregnancy tests. Turns out that my beta-HCG levels are just barely enough to trigger the ept test, as is demonstrated by the following photograph. Pretty funny, eh?
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| June 9, 2003 (Monday) |
The cryopreservation report shows a sperm concentration of 19
million/ml, forward progression of 74%, activity of 2++, round cells
of 0-1 million/ml, and agglutination of 0%, all normal. A
small sample was frozen and thawed, with a post-thaw density of 4
million/ml, forward progression of 56%, activity of 1-2++, and total
motile cells per vial, based on 0.2 ml volume, of 448,000. These are
good results, indicating that the cryopreservation should be
successful. The viral testing came back all negative, as expected.
They've frozen a total of 10 vials for me so far, leaving 8 to
go. I'll probably fall short by 1 or 2 vials due to the time
constraints, but that is ok.
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| June 9, 2003 (Monday) |
Today I had an appointment with my regular
physician, partly for a routine physical and partly to bring him up to
date. I've lost 8 pounds since my last appointment. Aside from the
cancer, I'm rather healthy, which bodes well for my ability to handle
the chemotherapy. He also signed the form to get me a temporary
disabled parking placard for the duration of the chemotherapy.
The dentist appointment didn't go as well. A cavity was found on the face of one of my wisdom teeth, and the decay went all the way to the nerve. Since root canals are not normally performed on wisdom teeth, however, the only option is a simple extraction. (Luckily, the tooth is not impacted.) Unfortunately, an extraction would require at least 21 days to heal (actually, more like 6 months to fully heal, but 21 days is the minimum), which would interfere with the chemotherapy schedule. Since the chemotherapy cannot be delayed, the extraction will simply have to wait until the chemotherapy is complete and my platelet and white blood cell counts return to normal. In the meantime I have a temporary filling and some Tylenol for the pain. (Ibuprofen and aspirin are prohibited because they are blood thinners.) I've been reading about chemotherapy and diet. The good news is they recommend eating ice cream and drinking soda to keep hydrated and avoid constipation. The bad news is chemotherapy will probably make everything taste metallic.
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| June 10, 2003 (Tuesday) |
Because Bleomycin can cause pulmonary fibrosis and impair lung
function, a prerequisite for 3BEP chemotherapy is to check lung
function. This is partly to make sure my lung function isn't already
impaired, and partly to establish a baseline for later comparison. So
today I went to the hospital for pulmonary function
testing. This involves breathing into a tube while a nose clip closes
off the nasal passages. The tests measured lung capacity, diffusion
rates and flow, and required me to breathe in various ways, such as:
breathing normally, holding my breath,
pushing out as much air as possible as quickly as possible, panting, and
breathing as though I had just run a marathon (3/4 breathes in and out
very rapidly). It was actually kind of fun, except for when I
accidentally swallowed with the nose clip on. (That made my ears want
to pop in a kind of reverse valsalva maneuver.)
My results were all good, with several above average. My hemoglobin
was 15.9.
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| June 11, 2003 (Wednesday) |
The PET scan was supposed to be today, but it's been cancelled because
it needs to be "authorized". Apparently, use of a PET scan is not yet
common with testicular cancer. My oncologist ordered the PET scan
because he wanted to see if the tumors in my chest were metabolically
active. If they weren't, then perhaps I'm stage II instead of stage
III. If they were, then a follow-up PET scan after treatment could be
used to determine whether there was still active cancer in the
nodes. (Apparently chemotherapy with seminomas has a tendency to leave
fibrotic tissue behind, making it difficult to determine with a CT
scan whether the cancer has responded to treatment or not.)
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| June 12, 2003 (Thursday) |
I went to the hospital today to have my head examined, to make sure
there are no tumors in the brain. This time there
was no barium sulfate solution to drink, since it was just a head CT
scan, but they did give me contrast dye through an IV. The IV was in
my arm, instead of my wrist, so the nurse didn't hit the nerve. The head CT is
fascinating. I can see my eyes, nasal passages, and the folds in the
brain. Again, I don't know what's normal and what's not, so I will
have to wait for the radiologist's report. But at least there's no
sign of a little alien homunculus pulling the strings.
After the CT scan I went down to pathology to pick up a copy of the slides for a second opinion at the Indiana University Medical Center. The pathologist, Dr. Lynch, gave me a guided tour of my pathology slides. He said that this was the first time he's shown a patient his pathology slides. It was fascinating. First he showed me normal testicular tissue. I saw the seminiferous tubules lined with Sertoli cells and with small round germ cells in the center and some spermatids (immature sperm). He also showed me a few Leydig cells, which produce testosterone. Then he showed me the cancerous tissue, which was completely filled with germ cells. He showed me examples from the testicle, the epididymis, and the spermatic cord. Except for occasional lymphocytes responding to the cancer, it was uniformly germ cells. That's a pretty clear indication of a seminoma. I'm still going to send the slides on to Indiana University, just to be sure. Seeing the pathology slides was helpful in another way. Consciously I always knew that cancer is the body's own cells multiplying unchecked, but unconsciously I had a misconception that it was something external invading the body. Seeing the slides make it clear on all levels that this was my own germ cells multiplying ad infinitum. Of course, the cause is probably still something external, such as DES, other hormones (synthetic or otherwise), pesticides or environmental pollutants. But the mechanism of the disease is my own cells multiplying unchecked and spreading. A friend in Chicago sent me a box full of Caffeine-free Dr. Pepper, since you can't get it here in Pittsburgh.
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| June 13, 2003 (Friday) |
My last sperm banking appointment was today. The five appointments
yielded a total of 18 vials. On average, six vials is enough to
achieve a single pregnancy with IVF, since IVF normally has a 15% to
18% success rate. The total
cost, including viral testing, processing of the samples
and storage, comes to $2,180.
My oncologist called around noon to say that he presented my case to the tumor board and they felt that even though I'm stage III, I'm a candidate for radiation therapy because my tumors are non-bulky and seminoma. He said that the small size of the tumors in my chest means I'm borderline between stage II and stage III, and seminoma is very susceptible to radiation therapy. If radiation therapy works, I could avoid some of the toxicity and negative side effects associated with chemotherapy. If radiation therapy failed, I could do chemotherapy later. I have a lot of misgivings about this, especially the last minute nature of the change. I've agreed to see a radiation oncologist on Monday, after being assured that if I decide to go with chemotherapy, I could still begin chemo on Monday, just a few hours delayed. But unless she's very convincing, I'm going to go with 3BEP chemotherapy. Everything I've read indicates that chemotherapy is the preferred initial treatment in my situation. This is definitely a roller coaster, and I'm going to have to cram this weekend to read everything I can about radiation therapy. I've been focusing exclusively on the risks and benefits of different forms of chemotherapy during the past few weeks. I ignored radiation therapy in part because I thought I wasn't a good candidate for it, and in part because I had read that chemotherapy is often more effective. Some of my concerns include the following:
I do not want to play with fire just for a chance of possibly avoiding the greater toxicity of chemotherapy. It's quite clear to me that I need systemic treatment, since the cancer has clearly spread and is not contained to a specific area of the body. If by any chance she convinces me to consider radiation therapy, my agreement will be contingent on my having another CT scan on Monday to check on the state of the tumors. If they can't get me a CT scan on Monday, I'm going with chemotherapy. If the CT scan shows that the tumors have grown or spread, I'm going with chemotherapy.
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| June 15, 2003 (Sunday) |
I am not looking forward to any kind of port or catheter. The idea of
a tube snaking through my veins into my heart gives me the
willies. I've got good veins, and don't have a problem with needle
pricks (so long as they don't pierce a nerve), so perhaps they won't
need a vein access device with me.
I've noticed in myself a tendency to indulge a little more since the cancer diagnosis. But it seems to be limited to things that I need, not things that I want. If I need something and would have hesitated before because of cost, I'm more likely to buy it now. But I still show self-restraint for expensive items that I don't really need, like the Segway HT.
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| June 16, 2003 (Monday) |
The radiation oncologist said that they have doubts whether
the tumor near my heart is cancer or not, and this would make a
difference in whether I'm stage II or stage III. However, she
recommends chemotherapy in my case, because radiation therapy risks
undertreating me and because they would also need to subject part of my
heart and lungs to radiation. My medical oncologist concurred, saying
that he just wanted to present me with all the options. This gives me
greater confidence in my oncologist.
My schedule will be cisPlatin and Etoposide every day of the first week of each cycle, running from about 9 am to about 3 pm, and Bleomycin the second day of every week for all 9 weeks. I'm not sure how long the Bleomycin will take (i.e., whether it is also an all-day affair). I'm also not sure whether they will reset me to a Monday-Friday schedule with the second cycle. Unfortunately, it was too late in the day to start 3BEP, so I will start tomorrow (Tuesday), at 8:30 am. My head CT scan came back clear, so there are no brain tumors. They did not that I have chronic left maxillary sinusitis. My oncologist still wants me to have a PET scan, and is fighting with my insurance company to get it approved. In particular, he wants to know whether the mass near my heart is metabolically active. He says that if the PET scan is to happen, it must happen no later than next week. If my insurance doesn't cover it, it will cost me approximately $4,000. Hopefully they'll cover it. The good news is my insurance company has precertified the chemotherapy, so there shouldn't be any problems with that. While I was at the pharmacy to pick up a prescription for antibiotics (for folliculitis, nothing to do with the cancer, although my oncologist likes the idea of my taking them while on chemo), Eckerd told me that my insurance has me listed with the wrong date of birth. After a half dozen calls to the insurance company, the insurance company confirmed that they have me listed with the correct date of birth. The insurance company also said that they don't show any transactions from Eckerd for me today. So it looks like Eckerd is billing the wrong insurance company and/or the wrong individual. I've lost a total of 11 pounds since the day after the orchiectomy. That's enough that I'm in the last notch in my belt, and my pants still feel a little loose. I'll soon have to switch to another belt. I'll probably have to go shopping for new clothes when this is all over (i.e., Retail Therapy). So right now I feel pretty good, since I'm lighter than I've been in several years. Of course, I haven't started chemotherapy yet. I'm told that the chemotherapy starts affecting you after a few days, and really hits you in the second week. I mentioned to my doctor that I've suffered from high pitch hearing loss and tinnitus since I was a child, due to childhood ear infections. Since these can also be side effects of chemotherapy, I won't necessarily be able to tell whether I'm getting it because of the chemotherapy. It might be a good idea for me to get a hearing test after the chemotherapy is over, to see whether there was an effect.
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| June 16, 2003 (Monday) |
I am not worried about the cancer, nor do I fear it. I'm not the sort
to worry about much of anything. If something is beyond my control, I
don't waste time worrying about it, because nothing I can do can
affect it. If I can do something about it, I take action, rather than
waste time worrying about it. When I first suspected that I might have
cancer, I started reading everything I could find on the topic. I've
absorbed a considerable amount of material. I understand what will
happen and what might happen (and also what won't happen). So even if
the future is indeterminate, it is still well-defined. Knowledge is
the antidote to fear.
If I die, I die. I will have done everything I can to avoid that possibility, and I have taken steps to provide for my wife and son in case I do die. But other than that, I'm not going to waste time dwelling on the possibility. I do not have any regrets. I am aware that having a history of cancer is going to make it more difficult to get health and life insurance in the future. It may also affect my employability, regardless of any protections provided by the Americans with Disabilities Act. But there's nothing I can do about it. It it becomes an issue, I'll deal with it then. In some ways, cancer will actually be good for me. I'm about 45 pounds overweight, so I'll end up healthier in some ways after the treatment is complete. My wife does worry, but that's part of the job description. It helps that my newborn son keeps her busy much of the time, distracting her. He grows every day, so there's always something new. Today he was awake during our daily walk, turning his head to look at the scenery. I do feel some anger. I did not cause the cancer and it is disrupting my life. I do not have any of the risk factors other than age. I want to know who or what caused the cancer. I've read dozens of papers about statistics relating to testicular cancer and dozens of papers about endocrine disrupting chemicals like diethylstilbestrol (DES), DDT, and estradiol. I'm amazed that such chemicals are approved for use in agriculture, including several known carcinogens. Several of these chemicals are fat soluble, meaning that lifetime exposure could have a cumulative effect. The use of such chemicals is reckless, irresponsible, and just plain stupid. If I can prove a connection, I will take appropriate legal action to correct this situation. I do find amusing thoughts popping into my head, such as:
My aunt sent me a copy of a 40-page essay she wrote 12 years after she was diagnosed with breast cancer. It talks about the emotional reaction to cancer and feelings. She talks about worrying that the cancer might recur, about the cost of cancer care, and about feelings of abandonment. She should probably publish it as a book, as there are no existing books that address this topic.
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| June 17, 2003 (Tuesday) |
Today was my first day of chemotherapy. I arrived at 8 am, and they
had me hooked up to an IV for hydration by 8:30 am.
Before they started the hydration, the nurse took some blood through the IV for testing. I suggested that they also test my beta-HCG levels, since they have only two data points for me: the day before the orchiectomy, and 10 days later. The latter was two weeks ago, so beta-HCG levels now would tell them whether the levels continued to decay or started back up. Since beta-HCG levels are my only tumor marker, it's a good idea to have them checked right before each chemotherapy cycle. (My chart says CBC, platelet, LDH, total bilirubin prior to each cycle, but does not make any reference to beta-HCG.) The doctor agreed. She took the blood in a syringe, and transfered it to each test tube afterward. The side effects were manageable, although I'm aware that they will likely get worse. Also, I only got etoposide and cisplatin today; I won't get bleomycin until tomorrow. They gave me Zofran in the IV, and a prescription for use at home, so I didn't feel any nausea. The nurse who inserted my IV was amazing. I hardly felt anything at all. They use a special type of IV that removes the needle after insertion, leaving a thin tube behind, since the aluminum in standard needles reacts with cisplatin. After the IV was started, I could feel the cool drip of the IV fluid. First they used the IV to hydrate me for several hours. This meant I needed to pee every 30-60 minutes. The first time the nurse unhooked me from the IV, but the other times I just pushed the IV tree with me to the bathroom. Next I was given Zofran to prevent nausea. The main side effect of this was it made me a little drowsy for 15-30 minutes. It also gave me a light dullness (similar to what happens when I take migraine medication) and a stiff neck. Then I was given etoposide followed by cisplatin. They gave me an information packet about Neulasta (a successor drug to Neupogen). They will give it to me next week to increase my white blood cell counts. This helps fight infection. The information packet came with a free digital thermometer, since I'm supposed to take my temperature every evening. After getting home, my main side effects appear to be some fatigue, feeling warmer, and a metallic taste in my mouth (presumably from the cisplatin). Creme Savers hard candy seems to help with the taste. Also, my sinuses feel full, almost like I'm about to get a sinus headache, but not quite. My chemotherapy regimen is as follows:
Initially I'm starting a day late, since I started on a Tuesday. They will reset me to a Monday-Friday schedule on the second cycle. Wednesday June 25, 2003, I will have a PET scan in addition to the Bleomycin. They only do PET scans on Wednesdays. It still isn't clear whether the insurance company will pay for it, but hopefully they will. This morning I had lost another pound, even though I ate a big dinner (stuffed chicked breast). Also, I had a nosebleed after waking up, which manifested itself as congestion in the left nostril, resulting in four bloody tissues. I've been having them off and on for a few years, presumably due to allergies and sinusitis, and always in the left nostril.
The day itself was rather boring. There were two other chemotherapy patients for a short while (their chemotherapy did not require hydration). Other than that I was by myself. The TV gets local channels only and generates a high pitched whine while it is warming up, but they're working on getting cable and a new TV. I watched it for a little while, but Dr. Phil is insipid and inane, and the soap operas are even worse. I spent the rest of the time reading two technical journals, reading 30 pages from a science fiction book I brought with me, and folding an origami robin and a dragon. Tomorrow I will bring a laptop with me and get some work done. I can see why cancer patients describe getting chemotherapy as having paint remover poured into your veins. Chemotherapy is, after all, a derivative of chemical weapons like mustard gas. Doctors treating soldiers exposed to mustard gas noticed in 1942 that mustard gas affected rapidly dividing cells, suggesting that it might be an effective agent against cancer. They subsequently found that lymphoma patients given it by injection showed some improvement. Many modern chemotherapy drugs (alkylating agents) are descendants of mustard gas, albeit less toxic. (It doesn't help to cure the cancer if you kill the patient in the process.) So in some sense good arose from evil, in that a weapon of war lead to the development of a cure for cancer.
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| June 18, 2003 (Wednesday) |
When I woke up this morning, the Zofran had started to wear off. I
guess it does make a weird kind of sense to have morning sickness:
I shaved my arms, to make the medical tape stick better and avoid the pain of hairs being removed with the tape. Today the nurse put the IV in the forearm of my left arm instead of the inside elbow of my right arm. It didn't hurt going it, but later hurt a little, probably because it was close to the nerve. Using the forearm made it easier to type (I brought a laptop with me, so I could do some offline work).
Today I had Bleomycin. I did not have an immediate reaction. Bleomycin is known to cause fever and chills about four hours after administration. The oncology nurse told me to take two Tylenol if this happens and to call them if it is severe. Curiously, I didn't have much of a metallic taste today from the cisplatin. I did use many Cream Savers and lemon hard candy, so maybe that helped. All in all, my side effects today weren't as severe as yesterday. All I really have is mild fatigue. I did get a sore throat later in the evening, but it was rather mild and didn't last long. I have noticed a greater tendency for valid word spelling errors in my writing (i.e., its/it's, effects/affects, die/dye, have/has and so on). I wonder if this is somehow related to the chemo (i.e., fatigue), or just a coincidence. This morning my weight went up by two pounds. Three sandwiches for lunch and a big dinner, plus some fluid retention from the IV probably was responsible. I'll see what happens tomorrow. I finished my initial collection of cancer jokes. Some of them are quite funny.
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| June 19, 2003 (Thursday) |
Normally I only sleep 3-4 hours a night. However, ever since the
operation, I've been sleeping 8 hours a night. Last night was an
exception, where I again slept only 4 hours. I felt refreshed when I
woke up, so I wasn't concerned. I mentioned it to one of the nurses,
and she said that one of the drugs they gave me yesterday does that.
I was somewhat nauseous when I woke up, and that continued throughout the day. I did eat lunch, albeit around 2 pm, and was able to keep it down. The nausea was in the back of my throat, not in my stomach. I got my beta-HCG results from Tuesday, and they were 18 mIU/ml, about half what they were after the orchiectomy. It's nice that they're heading in the right direction. (At this level, however, I'll no longer be able to trigger a home pregnancy test.) At least it's a sign that Junior is starting to shrink. My oncology nurse likes to wear Sponge-Bob shirts. Today, when she removed the IV at the end of the day, she gave me a Sponge-Bob bandaid to cover the hole. One of the other nurses saw it and said "Annette's marking her patients again". I noticed that they gave me some Mannitol (25% 50 ml) and asked what it was for. My nurse said it is to make sure I pee, so that the drugs continue to be excreted from my system. I don't see how I could avoid peeing, given the amount of fluids I'm getting. Like the past two times I got the Zofran, I was drowsy and unable to concentrate for about 15-30 minutes after getting the last of it. I couldn't even focus enough to read. Most of the other patients aren't there for as long as me, so there are constantly changing faces every day. Today they were more talkative and engaging, so I shared my son's picture with them. (Most of the other patients are much older than me.) Since some of their caregivers have college-age children, I talked with them about college admissions and financial aid. I've also been using a small laptop to work on content for a new web site that will be of interest to the financial aid community. (I don't have net access while in the hospital, so I have to focus on offline work.) I have part of my schedule for next week, and will receive the rest of it on Friday. I will also be at the hospital on Saturday to receive my fifth day of chemotherapy. Since the oncologist's office is closed on Saturday, I will be receiving my chemotherapy in the hospital's short-stay wing. My nieces sent me a homemade get well card and a present. The card said "Hair ... More trouble than it's worth!" and the present was a plush bald eagle with a note "The bald eagle soars above all others!". They put a lot of thought into it, and it brought a smile to my face. The nausea continued throughout the evening, although it got a little better after I took a Zofran. Burping helped. Taking a bath didn't.
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| June 20, 2003 (Friday) |
Today was by far the worst day so far. Not only did I have severe
nausea all day, but I had a complete loss of appetite. My pee smelled
really bad. My ears started hurting in the afternoon, and my
tinnitus got worse. My nurse noticed that I had some bruises on my
arms, so my platelet levels must be reduced. I lost two pounds since
this morning. My skin felt like it was burning, but I did not have a
temperature. I also felt chilled at the same time, despite the
temperature in the room being set at 72 degrees. (I'm the sort of guy
who can normally go out and shovel snow in short sleeves in the middle of
winter and not feel cold. I also like to keep the house around 65
degrees, since I can easily get overheated. So for me to feel cold is
unusual.) I also had the usual
fatigue. As soon as I got home I went to bed, but couldn't sleep. I
was able to eat (and keep down) half a serving of macaroni, some
chocolate milk and some raisins.
I think my hair is starting to fall out. I normally shed a little chest hair now and then, but it seems to be increasing. I would not be surprised if it doesn't start coming out in bigger quantities over the next week or two, and if I start losing head hair as well. (When folks hear about chemotherapy patients losing their hair, they often don't realize that this means ALL hair, including body hair.) The only good news is tomorrow is the last day of main chemotherapy for the first cycle. I still have Bleomycin on Wednesdays for the next two weeks, and a Neulasta injection on Monday, but my next five-day course of chemotherapy isn't until July 7-11. I started keeping track of the costs associated with treatment. US Airways did agree to extend the exchange period for my cancelled flight to Chicago for one year, and will be mailing me a voucher for that trip.
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| June 21, 2003 (Saturday) |
Today was the fifth day of chemotherapy. Since my oncologist's office
was closed today, I received the chemotherapy in the hospital's
Medical Short Stay wing. I was nauseous all day, and it took all my
concrentration to avoid throwing up. But when the nurse
gave me the decadron as a shot instead of a slow drip, it made me very
hot and caused me to vomit up the lunch (salisbury steak, carrots,
mashed potatoes, chicken noodle soup and greaps). Vomiting doesn't
make you feel any better. My nausea was so bad
that they nurse had questions about whether they should discharge
me. Instead, she called my oncologist and gave me another drug for
nausea. This worked, but made me incredibly drowsy and completely
wiped me out.
In addition, my original IV was hurting during the hydration, so before they started the chemotherapy, they switched me to a fresh IV in my other arm. I was in such bad shape all day that I couldn't do anything, not even read. The nurse is recommending that I eat only clear liquids for the next few days. At least my blood counts all seem to still be within the normal range, although they've dropped somewhat.
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| June 22, 2003 (Sunday) |
This morning I woke up at 4 am because of the ringing in my ears and
couldn't fall back asleep. I took a Zofran, Decadron and antibiotic
with a little food at 6 am. That got rid of most of the nausea, but
there was still a background undercurrent of nausea I couldn't get rid
of. Sitting, standing, and lying in bed were all the same -- no
relief. Also, I think the burning sensation on my skin is peripheral
neuropathy. It affects the pinky and ring finger on each hand, the
back of the index finger and thumb, and runs up the outside of each
arm. I can still type, but it feels like I have a permanent case of
frostbite. My feet also feel like they want to go to sleep. I feel weak all
over and am popping Tums to keep the Decadron heartburn at bay.
I can no longer hold my son because my breath and sweat are now toxic due to the chemotherapy.
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| June 23, 2003 - June 29, 2003 |
I was hospitalized from Monday afternoon through
Sunday afternoon.
When I saw my oncologist on Monday, I was complaining of severe abdominal pain that had started Saturday evening after my chemotherapy and intensified throughout the weekend. A blood test showed signs of a possible problem, so he had me admitted to the hospital that afternoon as a precaution. I underwent multiple blood tests, X-rays, and an ERCP (Endoscopic Retrograde Cholangio-Pancreatography) because they suspected an inflamed pancreas. During an ERCP they put you under with general anesthesia and send a tiny camera down your throat to examine the pancreas, gallbladder and duodenum. The camera has attachments for making certain repairs (e.g., an inflatable ballon and a cauterizer) so they can fix certain problems while they're diagnosing the condition. In my case they found that I had acute pancreatitis and gall stones. They believe that the pancreatitis was caused by the chemotherapy and not by the gall stones. But they were concerned that the gall stones could potentially reinflame the pancreas so they recommended removing the gall bladder now, while my counts were still good. So on Wednesday I underwent laprascopic surgery to remove my gall bladder. During this procedure they go in through the belly button and two small holes in the chest and conduct the surgery in a minimally invasive manner. I've had a mildly herniated belly button for the past three years, so they fixed that at the same time. I was then on only IV fluids (nothing by mouth) for several days to allow the pancreas to recover. They also kept me in the hospital because I became extremely neutropenic (my white blood cell counts had plummeted after the surgery). Then, when they restarted me on food, starting with a liquid-only diet (juice, jello, beef or chicken broth), my digestive system had trouble restarting. I was having extreme diarrhea every 15 minutes, partly because I had not had any food in about five days. Then they gave me anti-diarrhea drugs (I think immodium or a variant) and this caused the opposite problem. They did not want to discharge me until I had a normal bowel movement and my white blood cell counts had started recovering. The way my doctors explained it, I probably would have had problems with gall stones 20-30 years from now, but the chemotherapy tends to cause all problems to happen all at once. While I was in the hospital I lost another 5 pounds, so the total weight loss is now 20 pounds. I am still neutropenic (reduced white blood cell counts), but there's no reason why I need to be hospitalized for this. While I was in the hospital they trained me to give myself my own Neupogen shots, so I will be taking care of this. Since I'm neutropenic, I need to avoid people (especially anybody who has been sick recently), flowers, fresh fruit and fresh vegetables and so on for a while. The only other major event is the wisdom tooth that needs to be extracted (and which we were hoping to avoid extracting) fractured Saturday morning and now definitely needs to be removed. This will happen sometime early this week. My platelet counts are still fine, so this shouldn't be a problem, but if it is a problem I will probably need to undergo a platelet transfusion before the procedure. My restrictions right now also include a prohibition on strenuous exercise, lifting anything more than 10 pounds, bathing until the incisions heal sufficiently (showers are ok), etc. My mother, who just retired, is flying in on Monday and will spend the next 4 weeks with us helping out. While I was in the hospital my hair started falling out faster because of the chemotherapy. If I grab a clump of hair with my fingers, it tends to come out very easily. Gray hairs and thinner hairs are falling out first. I'm also bruising very easily. The tinnitus also makes it difficult to sleep or concentrate enough to read. The hospital room was rather nice. I did not enjoy being on an IV all the time and the constant pokes and prods to draw blood. One time they drew blood three times in one hour because somebody didn't coordinate all the orders, and the first one had to poke me three times because he was having trouble hitting a good vein. The IVs were especially annoying. The machine that regulates the flow of IV fluid makes a clicking noise every second. Whenever the IV bag runs out of fluid or the IV line gets a crink in it, the machine starts sounding an alarm. There's a silence alarm button on the machine, but that works only for a minute. The only solution is to call the nurse to fix the machine, and it takes the nurse anywhere from 15 minutes to an hour to respond. Even when the machine is working, they are pumping so much fluid into you that you have to pee every 30 to 60 minutes. All this makes it very difficult to sleep for more than half an hour at a time. The bed, a Hill-Rom Advance Series Bed, is a very cool piece of technology. The firmness automatically adjusts according to pressure to minimize pressure, so it is a very comfortable bed. It also does all the usual contortions of a hospital bed (i.e., you can put it into a sitting position). The nurses can also use it to weigh you while you're in bed.
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| June 30, 2003 (Monday) |
The second pathological opinion from Indiana University Medical Center
came in today, and it confirms that there are no nonseminomatous
elements in the testicular cancer.
My hair loss is accelerating. A good deal of hair is now missing from the back of my head. Previously the back of my head was completely covered with hair, with only pattern baldness on top. The hair loss is more akin to severe thinning than complete baldness right now, since there is still some hair, just not all that much of it. Enough hair is missing that the back of my head now feels cooler, so I will definitely need to wear a hat. My wife says the hair loss looks like mange. I will probably shave my head later this week, since that will look better than the intermediate result.
The appointment with my oncologist brought some really good news. They measured my counts in the office, and my white blood cell counts are 4.8 (they ran the test twice), so I'm no longer neutropenic. (A WBC of 4.8 is within the normal range. Before chemotherapy my count was 8.4 to 9.3, so this is still below normal for me, but it is within the normal range. I will have one more shot of Neupogen tomorrow, and that's it unless my counts drop again.) My oncologist also said that my tumor markers have dropped to zero. This means that the cancer is responding to treatment. He is going to delay the start of the next cycle by a week, to give my body time to recover from the surgery. He wants me to have a hearing test before the start of the next cycle, because my tinnitus is so severe. If the ENT confirms hearing loss, he may want to substitute carboplatin for cisplatin. Although carboplatin isn't as effective as cisplatin for non-seminoma, it has been successfully used for seminoma patients and has significantly reduced ototoxicity. He is also talking about possibly reducing me to two cycles instead of three, depending on the results of the PET scan and other diagnostic tests. My broken wisdom tooth is scheduled to be extracted tomorrow. The PET scan and Bleomycin are scheduled for Wednesday.
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| July 1, 2003 (Tuesday) |
More hair fell out last night, and what was left wasn't worth
keeping. I woke up with a lot of hair on my pillow. So I decided to
shave off the rest. A picture of the result appears below.
I started experiencing some bone pain today, presumably from the Neupogen. Since my last Neupogen shot was today, hopefully the bone pain will go away in a few days. My wisdom tooth was extracted today. It took only 2-3 minutes after they numbed me up with novocaine. The novocaine numbed me all the way to my left eyeball, so I didn't feel a thing. I took a percoset when I got home during the first gauze change. The old wives tale about using a wet teabag to help with clotting does help. The oral surgeon had a neat piece of technology in his office. Instead of taking X-rays the old fashioned way, by forcing you to bite on a film positioner, he has a device that rotates about your head taking X-rays of your entire mouth all at once. You still have to bite onto a positioner to keep your head from moving, but it isn't as bad as having bulky film in your mouth. Since the machine is carefully calibrated, you don't need to wear a lead-lined shield to protect you from stray X-rays.
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| July 2, 2003 (Wednesday) |
The bone pain has gone away.
I had a negative reaction to the Bleomycin today. It gave me the shakes and chills. I didn't have a fever, however. The shakes and chills went away after about 4-5 hours. Since I didn't have this last time, I think the fact that I was fasting for the PET Scan may have had an impact. It certainly caused my fatigue to become more severe. Today I had the PET Scan. First the nurse installed an IV. Then she installed a urinary catheter. The latter is necessary because the radioactive sugar they use during a PET Scan collects in the bladder, so they need to flush the bladder while the PET Scan is proceeding (not because of a radiation risk, but to allow for the imaging of that part of the body). The last time I had a catheter installed, I was unconscious under general anesthesia. This time I was awake, and it hurt quite a bit. I was then wheel-chaired to the PET Scan facility. This consisted of the equipment mounted in a trailer. The equipment is fairly expensive, so several hospitals share the equipment. This is why West Penn Hospital only conducts PET Scans on Wednesdays, since the trailer is parked outside their nuclear imaging department only on Wednesdays. About 45 minutes before the PET Scan they injected a radioactive sugar through the IV. Since I was fasting that day, my blood sugar levels were lower, allowing the radioactive sugar to travel through the body. Parts of the body that are metabollically active then collect the sugar, causing them to show up on the PET Scan image. Cancer tumors are metabollically active, so this technique is useful for identifying active cancer sites. This can be helpful in staging the cancer (i.e., identifying whether suspected tumors found during a CAT Scan are actually cancer), detecting microscopic tumors below the resolution of a CAT Scan, and in determining whether tissue still contains cancer after treatment. The latter will be important later, since seminomas tend to become fibrotic tissue after treatment, meaning that they still show up on a CAT Scan after treatment is complete. Timing of the PET Scan is critical, since they must scan the body while the sugar is still radioactive (it has a very short half life). They divided the scans into six sections, taking about 5 minutes per section. When it was over, a nurse came in to remove the catheter. That hurt as much as the insertion, because they blow up a balloon in the catheter after it is inserted to prevent the catheter from slipping out and they didn't fully deflate it. I will probably not receive results of the PET Scan for several days, since it needs to be evaluated by a radiologist. I have no further diagnostic tests or treatments scheduled for the rest of the week.
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| July 5, 2003 (Saturday) |
The incision above my belly button opened up again on Friday and started
bleeding. It soaked through six changes of bandages over the past two days
before it started slowing
down enough to start clotting. I wasn't showing any signs of
infection, so the doctor didn't see any need for me to come in.
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| July 7, 2003 (Monday) |
My doctor examined the incision area and said that it was fine. There
was a little clear seepage while he was examining me, and he said that
that was normal. He
told me to change the bandages every four hours, to use clean gauze
to clean the area, and to use neosporin or bacitracin along the
incision line before putting on a fresh bandage. Some bleeding or
seepage is fine, so long as the seepage is clear and not discolored.
The PET scan showed no active disease in any of the sites from the CT scan. However, it showed significant bone marrow activity throughout the skeleton, presumably because of the Neupogen. It is possible that these findings represent a false negative because of the extensive bone marrow activity. As such, they are inconclusive. The radiologist is recommending a repeat PET study six weeks following the completion of chemotherapy. My doctor said that it is normal to feel fatigue at this point, and that I should take a nap in the afternoon if I feel tired. I've lost 2 more pounds in the past week, so my weight loss is slowing. He would have expected greater weight loss following the gall bladder surgery, so only 2 pounds is good. Must be my mother's good cooking.
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| July 8, 2003 (Tuesday) |
The hearing test was rescheduled for today since Dr. Barsouk wanted to
be sure to get the results before my next cycle. We had to drive all
the way to UPMC McKeesport Hospital for the test, and ended up
arriving late because the directions were bad and we had to take a 20
mile detour because of construction at the exit we were supposed to
take.
The audiogram did show some additional hearing loss. The right and left S.R.T. were 20 db and 22 db, compared with 5 and 10 db on an audiogram from 19 years ago. Discriminability is 100% at 60 db, compared with 100% at 40 db 19 years ago. So basically I have trouble hearing soft voices. The high pitch hearing loss has also become worse by about 10 db. The workaround is for me to tell people to speak louder when I have trouble hearing them. The tinnitus was much better today, not much worse than it was before the chemotherapy. So perhaps the tinnitus is temporary. The otolaryngologist recommended staying away from caffeine, alcohol, chocolate, and steroid medications (e.g., the decadron) to help minimize the tinnitus.
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||||
| July 9, 2003 (Wednesday) |
The tinnitus was fairly strong when I first woke up, but then dropped
back to just above pre-chemo "normal" levels an hour or so later.
I also didn't have as much fatigue today. So hopefully the
chemotherapy side effects will all be temporary and will go away a few
months after I'm done.
Today is the last day for the horrible tasting antibiotics (Metronidazole). The pills are so huge (500 mg) that it's hard to avoid having them touch your tongue even when swallowing them with copious amounts of water. The bad taste then lasts for hours. I've lost a total of four inches of wasteline so far. If I lose much more weight, I'll have to buy all new clothes. I haven't needed to shave for the past few days. One of the few benefits of chemotherapy. One of our vacuum cleaners would constantly lose suction after the filters got clogged with cat hair. Rather than buy a run-of-the-mill vacuum, we bought a Dyson Animal (Purple). It finally arrived today. It's an expensive vacuum cleaner, but it works so much better than any other vacuum cleaner we've tried. The suction is much stronger, and it doesn't lose suction as it cleans. It took two extra weeks to arrive, because Amazon.com sent it by UPS to my billing address, a PO Box. (In a classic "blame the customer" move, Amazon said that it was my fault because I wrote "PO Box" instead of "P.O. Box" in my billing address, so their software couldn't tell that it was a PO Box. Maybe they need to hire better programmers, or at least address correct all their customer addresses. They still didn't answer why it was sent to my billing address, when I specified my street address as the shipping address. Amazon's customer service operation has gone downhill recently.)
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| July 10, 2003 (Thursday) |
Today I heard from a friend that the information I posted on a mailing
list about my cancer caused him to check out a testicular mass. It
turned out to be stage I non-seminoma. I'm glad that my email helped
him catch his cancer early.
The follow-up appointment with my oral surgeon was very quick and went very well. He said that I was healing fine from the wisdom tooth extraction. My tinnitus today was back to pre-chemotherapy levels. Also, I didn't have any peripheral neuropathy today. I also did not have much fatigue. All of these are good signs that the chemotherapy side effects will be temporary and not permanent. Today was the first insurance company glitch I've had to deal with. They classified the pulmonary function test as "HDO OUTPT HOSP OTHER", and deducted a $50 copay. They should have classified it as "HDM OUTPT HOSP DIAGNOSTIC". Diagnostic tests do not require a copay. I called them and asked them to correct the error. I noticed that I get the "Explanation of Benefits" statements about a month after the actual procedures.
|
||||
| July 11, 2003 (Friday) |
Today was the two-week follow-up appointment for the gall bladder
surgery. The doctor said that draining in the incision area is normal,
and that I should expect it to continue to drain for another three
weeks. He said that instead of using large gauze bandaids, I should
use absorbent gauze folded over and taped. This would absorb the
draining fluid better. (The large bandaids I was using had a tendency
to leak, especially when I sleep on my side.) He also told me to "milk"
the incision every time I changed the gauze to get the built-up fluid
out. He replaced the upper two bandaids with fresh steri-strips (these
were healing well), saying that I would not need to change them. He
also replaced the lower right large bandaid with a smaller bandaid,
saying I should change it as needed. He scheduled a follow-up
appointment for three weeks from now.
There was no co-pay for this visit because my insurance apparently doesn't require a co-pay for follow-up appointments within 90 days of surgery. Dr. Semins said that it is ok for me to drive again, although I should continue to refrain from picking up anything that weighs more than 5-10 pounds.
|
||||
| July 14, 2003 (Monday) |
Today was the start of my second three-week cycle of chemotherapy.
The antinausea medication they gave me (Zofran) caused a burning
sensation along my vein. Since this was the second time this happened,
they switched me to Kytril, a different antinausea medication. That
stopped the burning. They told me I could continue taking the Zofran
pills that evening, but I should try it without the Decadron (a
steroid) to see if it was enough. The purpose of the Decadron is to
enhance the antinausea capabilities of Zofran. But since I had a
negative reaction to the Decadron on day 5 of the first cycle, it
would be helpful to see if I can get away without the Decadron.
They had cable TV installed in the treatment room today, so the TV is no longer limited to the on-air network TV channels. I was able to have CNN on in background while I worked offline on my laptop. I also spent some time reading a science fiction book by Brin (Kiln People). My counts were all fine. In fact, my white blood cell count was 8.3 mIu/ML, which is solidly normal. My insurance company called today to let me know that the $50 copay on my pulmonary function test has been "waived", their way of saying that I was right that it should have been classified as a diagnostic test and so not subject to a co-pay. In the meantime, I got the explanation of benefits from the first meeting I had with my oncologist, and it showed him as being out-of-network. Since I called the number on the back of my card that day to verify him as in-network, and also have printouts from the insurance company's web site showing him as in-network, I called to file an appeal. I've even got witnesses, since I called the insurance company from my urologist's office while my urologist called the oncologist to also verify that he was in-network for my insurance. Since this means a difference of $3,900 in my out-of-pocket expenses, I'm definitely appealing. I wonder whether the insurance company is deliberately incompetent or whether they just hire morons. Incidentally, the insurance company also made an error on a urinalysis, coding it as "pay to patient" instead of "pay to doctor". Since it was only $6, I deposited the check and paid the corresponding urologist bill for $6. That was simpler than waiting on hold for half an hour for the insurance company.
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||||
| July 15, 2003 (Tuesday) |
The Kytril was much more effective at stopping nausea. Not only didn't
I have any nausea, but I also had an appetite. Of course, it could be
that this was not due to the Kytril alone, but because I also had a
little bit of Zofran before the nurse stopped the IV because of the
burning sensation. So I'll see today whether it continues to be as effective.
I still took a Zofran tablet in the evening. Last night I skipped the Decadron tablet (with doctor's approval) and was fine. Decadron is supposed to enhance the antinausea effect of Zofran. But since a Decadron shot caused me to vomit on day 5 of the first cycle, and because my doctors thought that the Decadron may have contributed to my pancreatitis and abdominal pain, it was decided to see how I react to skipping the Decadron in the evenings. My nurse pointed out that nausea tends to increase as the week progresses. I did have some nausea this evening. Today I got poked three times. The first time missed the vein. The second time hit the vein, but the vein did not have good blood return. Third time worked. An interesting hair loss observation. You don't lose hair from every region of your body to the same degree. In some areas the hair is just more sparse (e.g., eyebrows, upper chest and belly) and in some areas it is completely gone (e.g., head, pubic region) and in some areas there is no change (e.g., legs and arms). Even in those areas the hairs are a little thinner, and some of the hairs will come out easily. Also, even in the areas with hair loss, the hair is still growing back in, but the new hairs shed a lot. Looking at the hairs that didn't fall out, I can see that they start out thick, and then suddenly become thinner. I haven't needed to do anything to the hair on my head since I shaved it off two weeks ago. I also haven't had to shave my face since then; the five-o'clock shadow comes off when I shower. Eyebrows are still there, but they've thinned a little. Apparently they sell specialty wigs called "merkins" for folks who lose their pubic hair. This is incredibly humorous. Is there really a market for such things? I can understand wearing a wig or a hat to insulate the head from cold air in wintertime. But a wig for one's nether regions?
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||||
| July 16, 2003 (Wednesday) |
The nurse was right. Last night I had some nausea, but the Zofran
tablet seemed to help a bit. But then I woke up this morning at 5 am
with nausea. I didn't vomit, but it is about as strong as it was on
day 4 or day 5 of the previous cycle of chemotherapy. My blood
pressure is also up a bit.
At the hospital they gave me Kytril and Decadron right away. It took the edge off the nausea, but there was still an undercurrent of nausea throughout the day. As soon as I got home I took a Zofran and Decadron. I'm also going to switch to the BRAT diet (Bananas, Rice, Applesauce, Toast), which is supposed to help with nausea. I was so nauseous that I was unable to get any work done while at the hospital. I read the newspaper, but was unable to start a science fiction book, and the TV was too boring. I tried sleeping a bit, unsuccessfully. Today was a four-poke day. The first needle couldn't find the vein. The second needle worked, but then the vein dried up about an hour before I was done with chemotherapy. So the nurse tried the other arm. The third needle missed the vein. So then she tried the veins on the back of my left hand. That one worked. Since I still have hair on the back of my arms, she used a clingy bandage that sticks to itself instead of tape to cover the needle hole with gauze.
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||||
| July 17, 2003 (Thursday) |
I almost vomited last night, twice, and almost once this morning. The
nausea is getting pretty bad. So far I've been able to avoid vomitting
through will power, but that won't work much longer.
The peripheral neuropathy and tinnitus are back. I've also lost all the weight I gained last week, so I'm back to having lost 23 pounds since the orchiectomy. Today was a one-poke day. My oncology nurse switched off with a different oncology nurse since sometimes different nurses are better at finding different veins. This time it worked. (I've been holding the veins on the back of my hands, which do pop out well, in reserve for the third cycle, to ensure that I avoid the need for a port-a-cath or picc line.) They prescribed Ativan (Lorazepam) for me to take for the nausea in the evening. It helped a lot, but it also knocked me out. I took one around 6 pm and one around midnight. I missed dinner as a result. (Not that I would have been able to eat anything anyway.) So as of Friday morning, I've lost another 2 pounds, bringing the total to 25 pounds. I'm going to stick with the BRAT diet, plus some liquid diet (soup broth, jello, etc.).
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||||
| July 18, 2003 (Friday) |
Upon arriving at the hospital this morning, I promptly vomited. It was
mostly the vegetable broth soup I had had for breakfast. The nurse
told me to take plenty of Ativan this weekend to try to sleep through
the worst of the nausea. I have no appetite.
Other than that, today was a one-poke day.
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||||
| July 19-20, 2003 (Saturday-Sunday) |
Despite taking Zofran, Decadron and Ativan continuously, I had nausea
all the time this entire weekend. There was also a taste change in the
back of my throat that made lemon candy intolerable. The Ativan made
me sleep through a lot of it, but one can only sleep for so long. This
is pure torture. I constantly feel like I need to vomit.
I ultimately did vomit at 8:30 pm on Sunday, in the bathroom sink. Vomitting never makes you feel better.
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||||
| July 21, 2003 (Monday) |
My follow-up audiogram went well, showing only mild deterioration in
hearing loss, well within the variation from test to test. My
otolaryngologist does not recommend changing the chemotherapy protocol
as a result, but does recommend having a follow-up audiogram about a
month after chemotherapy is over.
My follow-up appointment with the urologist also went well. He said that my incision area has healed well (the healing ridge is gone), and that unless any of the followup CT scans or X-rays shows a problem, he won't need to see me again. At the oncologist they gave me Neulasta, a variant on Neupogen. This caused me severe bone pain. I tried napping through it and the nausea, without success. I vomitted twice Monday evening, once at 10 pm and once at 11:30 pm, and was not able to sleep all night.
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||||
| July 22-24, 2003 (Tuesday-Thursday) |
I was hospitalized on Tuesday (discharged Thursday) because of severe
bone pain, severe abdominal pain and severe nausea. I vomited several
more times while at my oncologist's office.
The severe bone pain was caused by the Neulasta working too well. It caused the bone marrow in my back and sternum to overproduce white blood cells, causing the white blood cell count to far overshoot normal levels. It took until Wednesday for the white blood cell counts to drop to 12.3, which is about 30% above normal. The abdominal pain was assumed to be related to the nausea, which itself was delayed nausea from the chemotherapy. X-rays showed no problems in the abdominal area. So the doctors kept me in the hospital on IV fluids, liquid-only diet and anti-nausea medication until I recovered. They started me back on semi-solid food on Wednesday, and decided to keep me overnight to make sure I was back to "normal". (Unfortunately, the hospital kitchen staff apparently had only one kosher meal available -- lasagna -- so I had the same thing for lunch and dinner Wednesday and lunch on Thursday.) While I was in the hospital the first IV backed up, causing a lot of swelling in the right arm. This also caused a lot of bruising on my right arm. The nurse put a hot compress on it and the swelling went down after about a day. They switched me to an IV in the left arm, using a vein in the muscle. I hate IV fluids, because they pump so much fluid in you that you have to pee every half hour. But they doctors say that it is important to pump a lot of fluid through you after chemotherapy so that you don't suffer from kidney failure. My tinnitus is back, much more severe than before. I talked with one of the oncologists about how to avoid this happening again next cycle. He said there's a new anti-nausea medication they can try. He said he'll also discuss with my oncologist about admitting me to the oncology ward for the last day of chemotherapy plus a few days, so that I'm not in severe nausea over the weekend. (Also, when they admit me to the hospital in a hurry, they can never get me a bed in the oncology ward. This means that the nurses have less experience with anti-nausea medication, and have to go get it instead of having it readily available on the floor. This causes delays in getting me the anti-nausea medication.)
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||||
| July 25, 2003 (Friday) |
I started having nonstop diarrhea at 4 am. If I drank some water, it
came out the tush a few minutes later. Other than that, my vitals are
fine and I'm feeling good. I called the oncology nurse when she
arrived in the office in the morning, and she said I could take
immodium. That seems to have worked. I'm drinking pedialyte to replace
the lost electrolytes (I hate Gatorade, so pedialyte is a tolerable
substitute).
The oncology nurse called back an hour later, saying that my oncologist would like me to come in to give a stool sample, since he's concerned that my diarrhea might be due to an infection. But when I said that it was just like the last time I was hospitalized, and that the immodium seems to have worked (so I have no sample to give), and that my diarrhea smelled normal (i.e., not foul), she agreed to let me skip giving the sample, so long as I continued to be ok. She said that if anything changed, I should come in immediately. I really don't want to spend the weekend in the hospital, and I'm convinced that this is just like the last time, when my digestive system took a while to reset after not having any solid food for a while. I have a few interesting observations about hair loss. I haven't had to shave my face or head since the beginning of July. This isn't really because my hair has stopped growing, although it is growing more slowly. But it seems that whenever I shower, the stubble on my face comes off with the dirt. Today I noticed that there is some hair growing on my upper lip, but it is much finer than previously and the hair is almost completely transparent. While I was in the hospital my son started 'talking'. If you talk to him, he'll gurgle back and try to hold a 'conversation'. He has also started sucking on his fists, although he hasn't yet opened his hands while sucking on them. It will be interesting to see whether he becomes a thumb sucker or a finger sucker.
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||||
| July 26-27, 2003 (Saturday-Sunday) |
Friday night I started having bone pain again. It occured in three
places: the base of my back, the sternum, and in my right leg. I'm not
sure the latter is related, as it wasn't in the thigh but in a diffuse
region on the right side of the knee. I called the oncologist on call
and he said I should take two oxycodone (I had some left over from
after the gall bladder surgery) and to call again in the morning if
the pain didn't improve. I still had bone pain in the morning, but it
wasn't as bad. My wife gave me a back massage, but said that the
chemotherapy drugs in my sweat caused her hands to tingle. So next
time she's using disposable gloves.
I'm experiencing taste changes for the first time. My saliva has a chemical taste. Also, I made some tuna fish with mayo and thousand island dressing (one of my favorite concoctions) and couldn't stand the taste. It tasted salty. I also can't stand lemon juice any more. Caffeine free Dr. Pepper still tastes great, even without the fizz. I had some falafel and pizza for brunch. I still have bone pain Sunday evening, but just in my back. My legs (calves) feel a bit weak when I stand or walk. I think this is related to the bone pain I had in my legs earlier. I'm drinking a lot of water in order to flush the chemotherapy drugs from my system. I don't want it to build up in my kidneys. So it's a constant drink-pee-drink-pee cycle. My pee no longer smells like battery acid, the bruises I got in the hospital are almost gone, and the peripheral neuropathy is almost gone, so this idea seems to be working. But I still have the tinnitus and hearing loss. The hearing loss is the equivalent of 20-30 db, according to a sound meter I used to measure the TV volume setting.
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||||
| July 28-29, 2003 (Monday-Tuesday) |
The pain in my calves (more of an ache or soreness than pain) is not
bone pain, but muscle pain. My oncologist
says that this is a common side effect of chemotherapy, and it should
go away when I'm done with chemotherapy. I will just have to walk
through it.
My oncologist thinks that my delayed nausea after each 5-day course of etoposide and cisplatin may be due to underdosing of my Zofran. He wants me to take one 8mg pill three times a day instead of two times a day. The CVS pharmacy did not have enough Zofran on hand to fill the prescription, so they're going to have to order it. It should be in by tomorrow afternoon. My oncologist continues to believe that three cycles of BEP is overkill in my case, but he acknowledges that there is a statistical benefit to three cycles. So we are going to do the third cycle. He is warning me, however, that the third cycle will be by far the worst as far as side effects are concerned. We discussed the bone pain from the Neulasta. He says it is very unusual for someone to have more side effects with Neulasta than with Neupogen. He wants to keep me on Neulasta, however, because the drug is self-regulating to some extent. In other words, when it produces too many white blood cells, those cells help excrete the drug, bringing down the white blood cell count to normal levels. He prefers this to the hit or miss approach with Neupogen. To deal with the pain, he says they'll put me on a morphine drip in the hospital or give me oxycontin. My oncologist wants me to consider delaying the third cycle by a week. The way he described it was "I don't want you to come out of this a criple; don't try to be a superman." We agreed to meet on Monday, August 4, to discuss it further. If I'm back to "normal" (where normal has a surreal definition for cancer patients), he'll let me start the third cycle on Tuesday, August 5, otherwise he'll want me to wait a week to start on August 11. The other issue we discussed was admitting me to the hospital for part of the third cycle. He said he wants to admit me on day 3 of the third cycle, give me day 4 and day 5 of chemotherapy in the hospital, and then keep me in the hospital for 2-3 days after that. That way they can monitor my nausea more closely, ensure that I get anti-nausea drugs round the clock, and give me the new anti-nausea medication if necessary. This will also allow them to give me pain medication for the bone pain. The goal is to avoid having my digestive system shut down because of chemotherapy, nausea and vomiting. In other words, better to admit me to the hospital in advance than to have to admit me as an emergent case. This way they'll be able to reserve a bed in the oncology ward, so I'll get better care.
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||||
| July 30, 2003 (Wednesday) |
At my oncologist's recommendation, I started taking the 8mg Zofran
pills once every 8 hours instead of once every 12 hours. Not only
doesn't this seem to be working, but it gave me a very painful headache.
On a scale from 1 to 10, where 10 is the most painful headache I have
ever had, it was a 45. It was far worse than any migraine I have ever
had. I called my doctor who told me to stop taking the Zofran. He said
that there is nothing I can take for the headache, and that I would
just have to wait until the drug had flushed from my system. So I
spent the afternoon in bed. The headache started dissipating at 8
pm, around the time I would have taken the next Zofran.
Also, probably unrelated, some of my joints have started occasionally 'popping' (akin to when you crack your knuckles). It isn't painful, just something new and different.
|
||||
| August 1, 2003 (Friday) |
The surgeon who diagnosed and treated my pancreatitis (and also
performed the gall bladder removal) says that I now have diabetes
caused by the pancreatitis. A urinalysis showed a 4+ glucosuria
reading. He said that the diabetes is probably permanent. I have to
have a bunch of blood tests, including a fasting blood sugar test (so
I can't do it today). I've scheduled an appointment with my PCP to
review the test results and learn about diabetes management.
Until I've met with my PCP, the doctor says that I should keep the carbohydrates to a minimum. So instead of the BRAT diet, which is high in starches (bread, spaghetti, etc.) I should eat a high protein diet, such as scrambled eggs, hot dogs, hamburgers, chicken, and turkey. Of course, such a diet doesn't help the nausea. The good news is I'm actually feeling pretty good today. No real nausea, although I have a loss of appetite and a bad taste in my saliva. The tinnitus is also only moderately severe today.
|
||||
| August 4, 2003 (Monday) |
I met with my oncologist today. We decided that I would start my third
cycle of BEP tomorrow. He had been leaning toward delaying it by a
week, but decided that I was well enough that a week's delay was not
necessary. He did, however, have the oncology nurse give me two bags
of saline through the IV today, since he thought I was a little
dehydrated.
The results of my blood tests came back, and weren't good. My blood glucose and cholesterol levels have gone haywire. (There is some evidence in the literature that cisplatin-based chemotherapy can cause hyperlipidemia.) My blood glucose levels are 184 (normal is 70-109), my 2-hour post-prandial glucose levels are 358 (normal is < 200), and my hemoglobin A1C is 8.1 (normal is 4.4 - 6.1). My cholestoral levels are 238 (normal is 120-199, two months ago I was 206), triglycerides are 248 (normal is < 150, two months ago I was 142), HDL cholesterol is 43 (normal is 40-59, two months ago I was 47), LDL cholesterol is 149 (normal is 60-129, two months ago I was 131), and my LDL/HDL ratio is 3.47 (two months ago I was 2.79). Tuesday and Wednesday I will receive my chemotherapy on an outpatient basis. I will be admitted to the oncology ward on Thursday and receive my chemotherapy on Thursday, Friday and Saturday in the hospital. They will keep me in the hospital through Monday or Tuesday. This will allow them to monitor and treat my nausea, try a new anti-nausea drug on me if necessary, give me insulin for the diabetes, and give me pain killers for the bone pain. They also want to keep my hydrated to prevent kidney failure. While I'm in the hospital they will bring in an endochrinologist to consult on the diabetes. There seems to be some disagreement about the cause of the diabetes. The surgeon who diagnosed the pancreatitis and performed the gall bladder surgery thinks that it was caused by the pancreatitis and is therefore permanent. My oncologist thinks that it was induced by the Decadron (a steroid) they've been giving me for nausea, and therefore temporary. My PCP says that my hemoglobin A1C levels indicate to him that it is permanent. Hopefully the endochrinologist will be able to shed some light on the matter. In any event, the management of the diabetes is the same, so today I have to go buy a blood glucose meter (my PCP is recommending the One Touch UltraSmart Meter Kit with built-in log book).
|
||||
| August 5, 2003 (Tuesday) |
The first day of chemo in the third cycle went well. The oncology had
a little trouble putting in the IV, but fished around a bit with the
needle until she found the vein. So today was a single poke day.
They are having me take Compazine in addition to Zofran and it seems to be working well. I have minimal nausea and no side effects from the Compazine. On the other hand, this is the first day, and cisPlatin tends to result in delayed nausea. My PCP explained that the high Hemoglobin A1C tends to be a long-term measure, and so elevated levels are an indication that the diabetes was on its way before I started chemotherapy. He did acknowledge that some folks believe it represents blood sugar levels over 6 weeks instead of 6 months. He also said that the pancreatitis and decadron could have accelerated matters. So now I have three different doctors telling me three different things:
From my understanding of Hemoglobin A1C, it measures the amount of glucose that has bonded with red blood cells. This reflects the blood sugar levels over the lifetime of the red blood cells, which is 2-3 months. That is more in keeping with the timeframe of my chemotherapy, which started almost 2 months ago. Also, my urologist did the same urinalysis tests multiple times (all before the pancreatitis), and none of them showed glucosuria. So I'm more inclined to believe my oncologist (who also specializes in hematology) and the surgeon more than my PCP. But we'll see what the endochrinologist says. The cause of the diabetes can have implications for treatment. For example, if it was caused by the pancreatitis, then insulin shots might be warranted. If it was caused by long-term development of insulin resistance, insulin shots wouldn't necessarily help. Managing my diet and spreading out carbohydrate intake more evenly throughout the day will probably help for all diagnoses, as will exercise and weight loss. My PCP gave me a basic education about managing diabetes. I'll need to get more information. For example, I'd like to find a web site that lets you specify your favorite meals, and then assembles them into a set of daily/weekly menus that help manage your blood sugar levels. If I can't find such a web site, I'll have to implement my own. It would actually be kind of fund to implement, since I could try multiple optimization methods (e.g., hill climbing, simulated annealing, simplex method, depth-first search, and genetic algorithms). I also need to find a few good diabetic cookbooks. My PCP is also recommending that I increase my exercise regime and lose an additional 30 pounds. The One Touch UltraSmart glucometer is an interesting gadget. It's like a fancy PDA in many ways. In addition to testing blood glucose levels and storing the results in a built-in logbook, it lets you record blood pressure, height, weight, hemoglobin A1C, doctor visits, exercise, meals, and so on. You can also upload the data to a computer for printing graphs and charts.
|
||||
| August 6, 2003 (Wednesday) |
Today I measured my glucose levels for the first time. They were 204
before breakfast, 337 before dinner. I also asked my oncology nurse if any
of my previous blood tests included glucose levels (obviously
non-fasting), and she said that on June 2 I was 154 and on June 23
183. The finger pricks weren't bad, but I suppose that they will
quickly become annoying after the novelty wears off and my fingers
build up calluses.
I haven't yet figured out where I'm going to carry the glucometer. Right now I carry too many gadgets and things with me. I've got a Palm Pilot, cell phone, business card case and digital camera in one pocket, and a wallet, money click, and pen in the other. Keys are in a third pocket. I may need to replace the Palm Pilot and cell phone with a Handspring Treo 600 to make room. But I was holding off on getting a Treo until they improved the battery life, since I don't like having to recharge the unit every day. (My current cell phone and Palm Pilot can go a week before needing to be recharged.) Today was a two-poke day. The first attempt to start an IV was in the most popular spot on my right arm. Although it initially worked, the flow stopped a few seconds later. She wrapped a warm towel around my forearm, and that caused another vein to pop to the surface. It is encouraging that so far they haven't needed to resort to IVs on the back of my hand. I had a little more nausea today. This was probably partly due to my last Compazine pill being taken at midnight, partly due to the Kytril not being as effective, and partly due to it being day 2. The nurse also told me that they may not be able to get the Emend (the anti-nausea medication for break-through nausea) from the hospital formulary tomorrow, but they've got other tricks up their sleeves. I'm quite certain that I'm going to have break-through nausea again this cycle. I will be in the hospital starting tomorrow and running through Tuesday, so there will be no entries in the chronology until I am discharged.
|
||||
| August 7-12, 2003 (Thursday-Tuesday) |
For whatever reason they weren't able to get the Emend from the
hospital, but the local CVS had it in stock so they called in a
prescription and my wife picked it up. The Emend works very well, and
was able to control my nausea. Between the Emend, the Compazine, and the
Kytril, I had less nausea this cycle than the last. My fatigue is much
more severe, however. I am totally lacking in energy. I also have
absolutely no appetite.
While I was in the hospital the Joslin Diabetes Center nurse came by to provide diabetes education. That was quite helpful. The Decadron definitely has an effect on my glucose readings. My glucose readings are 100 to 150 points lower without the Decadron. I feel really horrible. My doctor says that the next few days will be the worst. I asked about going back to the hospital, but he said there isn't anything they can do to make it more tolerable. I have an appointment to see him Thursday, and to get the Bleomycin.
|
||||
| August 13, 2003 (Wednesday) |
The tinnitus and peripheral neuropathy are back full throttle, worse
than before. I tried eating some scrambled eggs for breakfast, and it
tasted like I was eating foam rubber. But at least I was able to keep
it down. I've lost a total of 38 pounds to date.
I'm still physically weak and without any energy, but things seem a little better this morning than they were yesterday. But not much better. I can't do anything -- I have a 60-second attention span. The various anti-nausea medications only take the edge off. Between that and the diarrhea, I'm constantly visiting the bathroom or drinking pedialyte.
|
||||
| August 14, 2003 (Thursday) |
My oncologist had me provide a stool sample to make sure I hadn't
picked up an infection that was causing the diarrhea. They won't know
the results for a few days. In the mean time he prescribed
flagyl. They'll call me with the results, which will entail either
increasing the dosage or stopping it. He also prescribed immodium.
They gave me kytril for the nausea and hydrated me for several hours before giving me the Bleomycin. Between the nausea and diarrhea, I couldn't sleep. I also had a pretty severe case of acid reflux, but Tums handled that. The nausea seems to have abated somewhat by 2:30 am Friday. I still have it, but it isn't as bad. Well, my saliva tastes bad, and makes me want to vomit every time I swallow. We talked about my undergoing physical therapy and joining a gym. He wants me to do this, but not until he gives his ok.
|
||||
| August 15, 2003 (Friday) |
I discovered a drawback to weight loss today. I've lost enough weight
that there isn't much fat around my hips. This makes lying on the floor
painful on the hips. I still have enough fat on the tush that sitting
isn't a problem, although it is less comfortable.
I've decided that instead of getting a Segway, I'm going to get a lot of little gadgets. For example, I bought an Epson TM-U300PD receipt printer and an AirClic barcode scanner, and will create a shopping list printer for the kitchen computer. I'd love to have a Segway, but the shopping list printer and similar ideas are much more practical and less expensive.
|
||||
| August 17, 2003 (Sunday) |
The weight loss is causing problems in other areas. I no longer have
any cushioning around my knees. Previously, I would sleep on my side
with my legs together. Now, my knees bump against each other somewhat
painfully. So I have to sleep with a blanket between my legs.
The nausea seems to be gone, except when I get the bad taste in my mouth. The bad taste comes and goes. It is especially bad in the morning or when I lie down. The taste is in my saliva. When I swallow the saliva sometimes it makes me nauseous. Brushing my teeth or eating a breath mint seems to help reduce the taste for an hour or so. Drinking a lot of water also seems to help. The tip of my tongue tingles or is numb. This is probably related to the taste changes. I still have peripheral neuropathy and tinnitus. My arms also hurt a bit, especially where all the IVs have gone in. I feel like I have passed through purgatory and barely survived to return to the land of the living. The chemotherapy for testicular cancer is one of the most effective forms of torture ever devised by mankind.
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| August 18, 2003 (Monday) |
The oncologist's office called to say that the stool sample culture
came back negative, so I didn't pick up an infection in the
hospital. They told me to stop taking the Flagyl.
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| August 19, 2003 (Tuesday) |
I woke up this morning with really bad peripheral neuropathy. I still can't
feel my fingers, but at least I can type again. I also had some really
deep bags under my eyes, severe fatigue, and a bad taste in my mouth.
Later in the day I got a very severe migraine. It was unlike my normal migraines, in that it was on the right side (normally mine are on the left) and had severe nausea associated with it (normally the nausea, if any, is very mild). I also had minor nosebleeds in both nostrils. I'm pretty certain it was a migraine because I had a heightened sense of smell, which always happens with my migraines, and it responded to Amerge. It was similar in some ways to the Zofran migraine I had previously. I gained 10 pounds in the last two days. Some of this is rebound from the diarrhea (i.e., water weight gain). The rest is not watching how much I ate while recovering from diarrhea.
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| August 20, 2003 (Wednesday) |
I woke up at 3 am for an unknown reason and couldn't get back to sleep
until 5 am. I woke up again at 9 am with a residual migraine. I wonder
if I'm suffering from some kind of Zofran withdrawal.
I still have severe peripheral neuropathy. Taking a very hot bath helps. The vein pain in both arms seems to have gone away. I can't say the same for the bad taste in the mouth nor the tinnitus. My weight has stabilized, losing a pound from yesterday. At this point I've lost a total of 26 pounds since the day after the orchiectomy. My blood glucose levels this morning were 135 (top of the normal range). I guess having spanish rice for dinner helped. I had skipped measuring glucose levels while I was recovering from the diarrhea.
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| August 21, 2003 (Thursday) |
I had another migraine starting last night around midnight. This one
was a more normal left side migraine, but more intense than my usual
migraines. The Amerge also only took the edge off the migraine,
leaving behind a still nasty headache with nausea. I was only able to
sleep for 3-4 hours, and when I woke the migraine was still present.
Today was my last day of Bleomycin. It took three pokes to find a vein that wouldn't dry up. My white blood cell counts were low (1.1), so I'm neutropenic and will be taking Neupogen for the next few days. I'm also somewhat anemic, but not enough to warrant taking Procrit. I pointed out to the nurse that I had developed freckles at each of the IV sites, and she said that it is common for patients receiving Bleomycin. It is called "chemo burn" and may fade a little with time. That probably explains why all the scars from my surgeries are dark. I noticed today that my eyebrows have thinned out considerably. They're still there, just not as bushy or prominent as before.
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| August 22, 2003 (Friday) |
Today was my second day of Neupogen, and the bone pain is back.
It is just in my back, but it is pretty severe.
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| August 23, 2003 (Saturday) |
I had to take two oxycodone pills last night because of the bone pain,
which is now in both my back and sternum. The pills dulled
the pain enough so I could get some sleep.
The doctor said that the pain is an indication that it is probably safe to skip the last Neupogen shot. He said that if I wanted, I could take some additional pain medication along with the last Neupogen shot. But I'm all out of oxycodone, and one can't call in a prescription for that type of medication. So he said I should monitor my temperature and watch out for signs of infection, and call him again if my temperature goes above 100.5 (it's 98.1 right now).
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| August 24, 2003 (Sunday) |
I'm still feeling slightly nauseous, but there's no migraine. If the
nausea is coming from the Bleomycin (a first for me) hopefully it will
go away in a few days.
The bone pain is starting to go away. I tripped on the sidewalk near my house (there's a two-inch drop at the edge of the sidewalk), scraping my knee pretty badly. It seems to have clotted ok, but is still red and painful. I'll show it to my oncologist at my appointment on Monday.
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| August 25, 2003 (Monday) |
My white blood cell counts were 8.6, so I'm no longer neutropenic. I
am, however, still anemic, and my red blood cell counts were low
enough that they decided to give me Aranesp. (Aranesp is like Procrit,
but lasts three times longer, so only one shot is usually required.) That stuff really stung
badly going in. Hopefully my red blood cell counts will go up by the
time they need to give me the second shot, so I can avoid the sting.
They also drew blood for checking my tumor markers (beta HCG). They'll call me with the results a few days from now. It took them four pokes to find a vein they could use to draw the blood. The hospital will call me to schedule the follow-up CT scan (about two weeks from now) and PET scan (about six weeks from now). The PET scan is delayed to allow time for the Neupogen to get out of my system. My oncologist said I can travel again, so long as I schedule any travel around my appointments. I've officially lost a total of 30 pounds from start to finish.
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| August 26, 2003 (Tuesday) |
My CT scan has been scheduled for September 9, in the morning.
Today my primary complaints are: peripheral neuropathy (especially in my fingertips), bad taste in my mouth, tinnitus, and slight nausea.
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| August 27, 2003 (Wednesday) |
The incision above my belly button started oozing again, but quickly
scabbed over. Otherwise nothing much happened today. I still have
peripheral neuropathy, tinnitus and light nausea.
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| August 28, 2003 (Thursday) |
Good news. I got a copy of the lab results for beta HCG (my tumor
marker) and it shows a normal level of <5 mIU/mL. This is an
indication that the chemotherapy was effective against the cancer. We
won't know for certain that the cancer is gone until the CT and PET
scans.
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| August 31, 2003 (Sunday) |
While grocery shopping, the incision above my belly button started
oozing again. I wasn't doing anything strenuous -- no heavy lifting,
no bending at the waist -- so I have no idea what could have caused it
to start oozing. There was a fair amount of pus, so maybe the pus had
been building up pressure until it popped. When I got home I 'milked'
it to get the rest of the pus out, then put on a fresh nonstick
bandage.
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| September 3, 2003 (Wednesday) |
The incision is still seeping, but it doesn't seem infected.
The scab on my knee is starting to come off, with new skin underneath, so my platelet count must be ok. My eyelashes are falling off, so I'm still losing hair. My eyebrows have also thinned out to a faint shadow. I have a greater tendency to sunburn. It isn't painful (no itching), but I've been peeling even after a slight exposure. I've also gotten a few new freckles, especially where they poked me with an IV. (My orchiectomy scar is also dark brown.) So far I've been told that I look like each of the following celebrities: Paul Shaffer, the three curious characters from Blue Man Group, and Lex Luthor (Michael Rosenbaum). Decide for yourself.
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| September 5, 2003 (Friday) |
A limited amount of facial hair has started growing again, mostly on
my upper lip. The mustache hairs are coming in transparent instead of
dark brown.
The incision over my belly button is still not healing completely, I still have tinnitus and peripheral neuropathy, and I still have occasional mild nausea.
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| September 8, 2003 (Monday) |
I figured out that the belly button incision was continuing to seep
because the bandage was preventing it from forming a scab. More
accurately, a scab was forming within the gauze and not over the
incision. So I took off the bandage and let the incision aerate for
four hours, which was enough time for the scab to begin to form.
I got another batch of explanation of benefits forms from my insurance company today, bringing the total cost of treatment over $100,000. As usual, the insurance company misclassified a diagnostic test as "hospital outpatient other" (the blood test was performed in the hospital's outpatient laboratory) and tried to charge me a $50 copay on a $40 blood test. I called the insurance company and they did the usual song and dance about having to look into it and get back to me in a few days. This time they had an additional twist of their computer system having problems.
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| September 9, 2003 (Tuesday) |
Today is my post-chemotherapy CT scan. My oncologist has ordered a CT
scan of the chest, abdomen and pelvis. Hopefully this will show no
evidence of disease. If it shows any nodes, then I will have to have a
PET scan to distinguish between fibrotic tissue (scar tissue that has
not yet been reabsorbed by the body) and active disease.
The CT scan process was similar to the last time. As before, they told me to drink two containers of the same berry-flavored magic potion and then to change into a hospital gown. The berry shake has to be drunk within a period of ten minutes; I made it with three minutes to spare. Like the last time, I was full to the gills and could barely get the last ounce down. Then I had to wait an hour for the solution to spread through my system. Then they walked me down to the CT, hooked me up to the IV and tossed me through the hole in the doughnut. I could feel the same metallic taste in the back of my mouth, and the hot sensation a bag of popcorn feels just before it pops in the microwave. Like the last time, I asked for a copy of the films. I looked at them when I got home, comparing them to the previous set of films. It looks like the tumors have shrunk, but that there is some residual mass. So I'm guessing that a PET scan will be required. But I won't know for certain until I get a copy of the radiologist's report, as CT scans are difficult to interpret.
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| September 10, 2003 (Wednesday) |
I got a copy of the radiologist's report on yesterday's CT scan. My May 30, 2003 CT scan showed three tumors in the lymph nodes: a 5 mm tumor adjacent to my heart, a 1 cm tumor just below the diaphragm (in the right retrocrural lymph node), and a 3 cm tumor just above where the aorta splits to go into the legs. The new CT scan shows that the tumor next to my heart is gone. The other two tumors are still present, but have decreased in size. The tumor at the level of the aortic bifurcation has decreased in size from 3 cm to 1 cm. Since there are still nodal masses, a PET scan will be required to determine whether the remaining masses represent active disease or fibrotic tissue (scar tissue that has not yet been absorbed by the body). It is common for seminoma to leave behind fibrotic tissue. The PET scan has not yet been scheduled, as the hospital only schedules them up to four weeks in advance. But hopefully they'll schedule it for four weeks from today. (The PET scan has to be scheduled at least six weeks after my last Neupogen shot, to avoid the possibility of a false negative. My last Neupogen shot was on August 22, and I had a shot of Aranesp on August 25, so the PET scan can be no sooner than October 8.) If the PET scan shows active disease, there are many possible directions treatment can take, including radiation therapy, a RPLND surgery, and further chemotherapy (salvage chemotherapy).
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| September 11, 2003 (Thursday) |
Some darker facial hairs have started growing, but the bulk of the
facial hair growth is white or translucent. All of the new hair is much
finer than before. My chest hair (what little is left) continues to
fall out.
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| September 12, 2003 (Friday) |
On Tuesday, September 2, 2003, I was interviewed by CNNfn for a
segment about student financial aid. I wore a suit to the interview,
and decided to take my picture in a mirror before removing the suit.
I do look a little bit like the evil alien from the planet zork in this picture. This was the best of several photographs. The other photographs made me look a little bit like a snearing conehead or a tenctonese "newcomer" without the spots.
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| September 14, 2003 (Sunday) |
Today was Cancer Survivor Day at PNC Park. A handful of
lectures on cancer topics in the morning were followed by a
Pittsburgh Pirates baseball game in the afternoon.
Finding the venue for the event was a bit confusing. The American Cancer Society provided clear directions on how to get to PNC Park, but didn't specify where the event would be held once one arrived at the park. None of the security guards seemed to know anything about the event either. Eventually I found it by walking all the way around the park. The first talk was about melanoma but very basic. The question and answer session was much more interesting than the talk itself. Next was a motivational speaker who was quite boring and would be a failure at motivating a chicken to cross the road. Most of his talk had something to do with flunking high school and being spanked by his father. The most interesting aspect of the baseball game was the pre-game preparations. First they had six people painting the lines, using a string as a guide. Two of the people carried a six-foot-long paint shield, one used a spray can to paint within the shield, and one held the empty spray cans. I'm not sure what the job of the fifth and sixth people were, but it looked like they were supervising the others. After they were done painting lines, two of the people dragged metal grates on ropes along the dirt to remove scuff marks. The metal grates and rope contraptions looked similar to the tool one uses to create crop circles. I wonder if any of these staff moonlight in corn fields in the midwest? After they were done with this, they used a hose to spray the dirt with water, presumably to keep it from blowing around in the wind. They then reinserted the first through third based into the ground. The game itself was sad. I left after the second inning, when the Pittsburgh Pirates were losing to the Philadelphia Phillies 8 to 0. They tried changing pitchers, but the replacement didn't have any better luck. The fans did give a brief cheer when the Pirates finally got a man on base, but it wasn't very loud, since there were only a few thousand fans present. The price gouging at the ball park was amazing. $3 for a bottle of water, $5.50 for a slice of pizza, $2.50 for a small bag of candy, and $3.50 for a pretzel. Needless to say, I brought my own food. They wouldn't let me take a can of soda into the park, but did let me bring in a bottle of water and a bag of potato chips. I'm not sure I understand the logic, since aluminum is recyclable and Alcoa is based in Pittsburgh. Unfortunately, I discovered that the chemotherapy has made me rather prone to sunburn. After being in the sun for only an hour, my arms and neck had turned bright red.
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| September 15, 2003 (Monday) |
I asked a friend for some statistics relating to how often the residual nodal masses left behind by seminoma represent active disease. He said that Sloan Kettering quotes a 10% rate of active disease in post-chemotherapy nodal masses, based on pathological evidence. Indiana University believes the figure is lower, based on a lower relapse rate. The lower Sloan Kettering figure is probably due to residual cancer that |
