May 1, 2003
I noticed some anomalies involving my right
testicle during my monthly testicular self-exam:
¤ My right testicle was swollen, about twice the volume of my left testicle.
¤ My right testicle felt hard.
¤ There was a testicular mass above the right testicle and epididymis, about the size of a hazelnut. This testicular mass also felt hard.
¤ My scrotal sack felt "full" on the right side, presumably because there was more "stuff" in it.
¤ 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.
May 3, 2003
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.
May 5, 2003
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.
May 16, 2003
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.
May 19, 2003
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.
May 20, 2003
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.
May 21, 2003
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.
May 26, 2003
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. 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).
May 27, 2003
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.
May 29, 2003
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.
May 30, 2003
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.
June 2, 2003
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.
June 2, 2003
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:
¤ A 5 mm tumor in the right cardiophrenic lymph node.
¤ A 1 cm tumor in the right retrocrural lymph node.
¤ A 3 cm nodal mass at the level of the aortic bifurcation.
This means I have stage III testicular cancer. I made an appointment to see Dr. Barsouk, an oncologist at West Penn Hospital, the same day.
June 2, 2003
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.
June 3, 2003
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.
June 3, 2003
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.
June 4, 2003
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.
June 5, 2003
Called 1-800-4-CANCER (1-800-422-6237) and ordered some of the American Cancer Society's free booklets on cancer treatment.
June 5, 2003
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.
June 5, 2003
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?
June 9, 2003
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.
June 9, 2003
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.
June 10, 2003
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.
June 11, 2003
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.)
June 12, 2003
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.
June 13, 2003
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. 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:
¤ Which is more likely to cure me: Radiation therapy or 3BEP chemotherapy? What are the long-term survival rates?
¤ A 3 cm abdominal tumor is borderline even for stage II. Considering that my original tumor doubled in size in a little less than two weeks, and it has been two weeks since my CT scan, it's likely that my tumors are much larger now.
¤ I've read that chemotherapy is less effective when it follows radiation therapy.
¤ My beta-HCG levels are higher than normal for pure seminoma.
¤ I haven't yet heard the results from my head CT scan on Thursday.
¤ Radiation therapy in my case would be extensive, risking cardiac and renal complications.
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.
June 15, 2003
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.
June 16, 2003
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 oncologist also recommended 3BEP, to avoid the toxicity associated with an extra cycle of etoposide and cisplatin in 4EP. Since we're on the same page, I will be undergoing 3BEP chemotherapy. They will include antinausea drugs like Zofran in the mix. Since I'm young and have good veins, they will initially use an IV to deliver the drugs, only switching to a catheter/port if it becomes necessary. (Although I don't like needles, I can handle it so long as the nurse doesn't hit the nerve. I much prefer an IV to a catheter, since the idea of having them snaking a tube through my veins into my heart makes me nervous.)
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.
June 16, 2003
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:
¤ The virtues of chemotherapy as a mosquito repellent.
¤ Metaphors that refer to chemotherapy in terms of caustic chemicals like Liquid Plumber, Draino, battery acid and nail polish remover.
¤ The benefits of being bald.
¤ Wondering whether the folliculitis (a form of acne that forms around hair follicles) will go away when I no longer have any hair.
I've only been able to find two books of cancer humor: 57 Good Things About Chemotherapy, by Alec Kalla and Andy Williamson, and Not Now... I'm Having a No Hair Day by Christine Clifford and Jack Lindstrom.
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.
June 17, 2003
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:
¤ Hydration for 3-4 hours before cisplatin.
¤ Zofran half an hour before chemotherapy. (This drug is for nausea from the chemotherapy.)
¤ Decadron half an hour before cisplatin. (This drug is for delayed nausea effects from the cisplatin.)
¤ Etoposide 100 mg/m2/D (200 mg total daily dose) on days 1, 2, 3, 4, 5 of each three week cycle.
¤ Cisplatin 20 mg/m2/D (40 mg total daily dose) on days 1, 2, 3, 4, 5 of each three week cycle.
¤ Bleomycin 30 units IV/Day on days 2, 9, 16.
¤ Neulasta on on day 5. (I think the nurse said Monday, which would be day 7, but my chart says day 5. The nurse later told me that since my day 5 will be in the hospital's short stay section, they will give it to me on Monday instead.)
¤ Cephalexin 500mg three times a day. This is an antibiotic for my folliculitis, but my oncologist likes the idea of my being on an antibiotic during chemotherapy.
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.