Late February, 1997: The Discovery
It all started in late February of 1997. My wife, Liz, and I were adjusting to life as parents. Our son, Sam had been born only 3 and a half months earlier. As a new father and an owner of a small, start-up software company preparing for the biggest trade show of the year, my life was quite insane. One night, I was lying on the bed and I noticed a small hard spot on the inside of my right testicle. At first, it didn't seem that strange to me since I'd noticed some occasional "hardness" in the testicle before. But this time, over the next few days, the hardness didn't go away - and seemed to be getting a little larger. I mentioned it to Liz and after a few days she convinced me to let her feel it. Immediately upon feeling it, she suggested I get it checked out by our doctor. But I had this big trip to LA coming up the next week (for the trade show), and had very little time to squeeze in a visit to the doctor. I was thinking I'd just wait until I got back, but at the last minute (with some additional urging from Liz), I decided to make an appointment. I ended up getting an appointment on the same day I was leaving for LA.
Tip: If you feel anything strange in your testicle, even if it doesn't hurt (TC rarely does in the beginning), get it checked out.
March 2: The Misdiagnosis
So, in I went to see our family doctor. I described the problem and let him have a feel. I still have a generally positive opinion of my GP, but he made a major mistake here. After checking me out, he proclaimed (with confidence) that I had epididymitis - an infection/inflammation of the epididymis. He then went on to say that I did NOT have testicular cancer - that he'd seen TC before and that what I had was not TC. He said that the infection was a minor condition and that it often it clears itself up, but antibiotics would help it clear up more quickly. So he prescribed some antibiotics for the infection and sent me on my way. I left feeling completely confident that I had a simple infection. Despite the doctor's mention of it, TC hadn't registered with me as even a remote possibility.
I used to live in LA and I still have several close friends who live there, so my trip was going to be a combination of business & pleasure. I knew I'd be doing a lot of business schmoozing as well as partying with my friends - so it would undoubtedly be a week peppered with alcohol-laden socializing. Figuring that this probably wouldn't be a good mix with the antibiotics, I decided to wait until I got home to take them. I ended up having a successful exposition and launch of our new software as well as a fantastic time with my friends while in LA.
The week after my return home, Liz, Sam, and I were going to Florida to stay with her parents for a few days. My testicle had started aching slightly and Liz, annoyed that I hadn't taken the medication while in LA, urged me to take it now. So I started on the antibiotic protocol and we went to Florida. The antibiotic was prescribed for one week - and as the week wore on, my testicle started to ache more and more. While in Florida, it got so bad that I was having trouble sitting down comfortably. The lump had also grown to about the size of a grape and had become soft. Concerned about the pain, I called my GP from Florida. He gave me the name of a urologist and suggested that I see him immediately upon my return.
Tip: If you do have a lump and want to get it checked out, especially if you had an undescended testicle as a child (putting you in a significantly higher risk group), go to see a urologist rather than a GP ASAP.
March 19: The Diagnosis
I walked into the urologist's office completely oblivious to my plight. I was certain that I had epididymitis and that I simply needed a stronger antibiotic. I met the urologist and had a positive first impression. He seemed very experienced and competent. He did a physical exam and then said he'd like to do a sonogram to take a closer look. Luckily, he had a sonogram machine right there in his office and was able to basically walk me straight over to have the exam. During the sonogram, being a new father and having sat through several sonograms in recent months (and with TC still not on my radar screen), I joked with the doctor about whether or not he could see a fetus in there.
He wasn't in a joking mood. He said: "You see this mass here?" I said: "I guess so." He said: "and you see this here - this appears to be calcification." I said: "Yeah." He then tells me that testicular masses almost always turn out to be malignant and therefore the proper protocol is to remove "the whole thing" (as opposed to doing a biopsy). I STILL was not getting the picture - I thought when he said "malignant" that he meant some tiny, easy malignancy - and when he said "the whole thing" that he meant the "whole" tumor. I asked him to describe what he would do, and as he explained the orchiectomy procedure, it finally dawned on me: "You mean you want to remove the whole testicle?" "Yes." Now finally awake, my brain started racing: "I'm going to be a 'uniballer'! They don't just do this on a whim - I must be in trouble! This isn't just some little tumor - I HAVE CANCER! THEY'RE GOING TO REMOVE MY TESTICLE - AND I HAVE CANCER!!!"
As the gravity of my situation quickly sank in, I became almost paralyzed. My brain and emotions were overwhelmed. I decided that if I did indeed have cancer, then the sooner I get it out, the better. I made an appointment for surgery the next day. I tried (with limited success) to keep my cool until I left the urologist's office. I quickly decided that I couldn't possibly keep this from Liz even if I wanted to, so I called her from a payphone right outside the office and immediately broke into tears as I explained what was going on. She was obviously very upset by the news, but managed to stay cool and to calm me down just a little. We agreed to meet at home. When I hung up, I drove back to my office, quietly collected my things, and told my business partner that I just "had to leave."
When I got home, I was in for was one of the most emotional nights of my life. As if the new realization of having cancer wasn't scary enough on its own, my fears were only heightened by the fact that the only other person I'd ever known with TC had died within a month of discovering that he had it. I wondered if I was going to die - and if so, when. How much time did I have? I looked at my little son and wondered if he'd even remember me. I remember thinking that my first real memories - ones that are still clear as an adult - didn't occur until I was around 5 years old. I wondered if I'd live long enough for my son to have lasting memories of me.
Since I had just met this urologist that day, and we were now talking about removing my testicle, I wanted to get a second opinion. So I squeezed in a visit to a second urologist who confirmed the diagnosis. I also called an old high-school friend of mine (who I hadn't spoken to in years) who is a urologist in Florida. He was reassuring, gave me some useful general TC information, and confirmed that the orchiectomy seemed appropriate.
After I described my situation to him - including the fact that I had an undescended testicle as a child, but that the affected testicle was the OTHER one - he very strongly suggested that I bank some sperm. He said that the odds were pretty high that my remaining testicle (which was brought down late - at around age 8) was infertile. Armed with this new information, my wife quickly identified a sperm bank and made an appointment for me the next morning (the day of my surgery!).
Tip: While recognizing the relative importance of saving one's life over banking sperm, I think it's important to talk to your urologist about this - especially if you're in a situation like mine (i.e., about to have your one normally descended testicle removed). I wouldn't significantly delay surgery, but if you think that you might EVER want to father a child, you should at least start looking into sperm banks immediately (your urologist should be able to recommend one). For most men, it's unlikely that a single orchiectomy will render them infertile. However, future treatment (e.g., RPLND surgery and/or chemo) could.
March 20: Radical Right Orchiectomy
The first order of business was to make my sperm deposit. To this day, I still find it amazing how "The Girls of the Big 10" can take your mind off of anything - even an impending surgery - even cancer!
After the "deposit", the next order of business was to get to the hospital for my surgery. Not wanting to believe that I really had cancer, I kept agonizing over whether or not to go forward with the surgery so soon - before I had time to really learn about all the potential options. I was thinking: "Couldn't they pull the testicle out, leave it attached, do a biopsy, and if it's not cancer, put it back in?" I had heard about the risk of "spilling" cancer cells, but this idea seemed reasonable to me. It was a lot to come to grips with in 24 hours.
Luckily, my urologist was flexible and understanding of my mental state. I ended up arriving late at the hospital due to a number of factors including my indecision about the surgery and, when I finally decided to go forward with it, making a second sperm deposit (in the same day!).
Before surgery, they took my blood (to check my "tumor marker" levels) and did a chest X-Ray. The chest X-Ray is done because TC has a very predictable spread pattern from the testicle(s) to the retro-peritoneal (abdominal) lymph nodes to the lungs. Both the X-Ray and the tumor markers ended up being normal. The surgery was done on an outpatient basis.
When I woke up, I remember being extremely uncomfortable. I was put in a hospital room where I had to demonstrate my ability to urinate before they would let me go. My father had come to see me in the hospital - and his presence was worth a great deal to me. When I finally did leave the hospital, I remember thinking that I didn't seem physically ready to go, but I went anyway. My father drove me home, and when I got there, I slept for most of the next day. I awoke to the realization that I had cancer. I didn't know it then but this would be the very first thought on my mind every morning when I awakened for many months to come: "My God, I have cancer!" It's very difficult knowing how to act when you're not sure how long you might be around. On the one hand, you don't want to acknowledge the possibility of death - nor do you want to concern others around you, so you're inclined to carry on life as usual. On the other hand, you feel obligated to live each moment "to the fullest" because you may not have that many moments left. Even deciding how to define "to the fullest" is a difficult exercise.
We had to wait several days to get the pathology results. Having already started researching the disease (primarily on the TCRC web site), I was hoping that it would end up being a "simple" case of seminoma. We were fairly crushed when the news came that it was 100% Embryonal Carcinoma (nonseminoma). During my research, I had learned that nonseminoma often involved more surgery and/or chemo than seminoma - and that among nonseminomas, Embryonal Carcinoma was among the most aggressive. At first, I became more and more scared as I learned about my disease. It was ultimately the personal stories on the TCRC web site - where I read about real people who had survived the same type of cancer I had - that started easing my worried mind. I am documenting my own story, in part, in the hope that it might have the same effect on others.
I had my first CT-scan done about the same time that we got the pathology report (several days after my surgery). It also came out clean. This classified me a "clinical stage I", meaning that by all clinical measures, the tumor was confined to the testicle.
I now had to make the next major decision regarding my treatment. Should I have the retroperitoneal lymph node dissection (RPLND) surgery or should I go into a surveillance protocol. After feverishly studying every article, paper, and clinical study I could find, I decided to go forward with the surgery based on the following:
1. My pathology report indicated evidence of both vascular and lymphatic "invasion." This meant that cells were seen in the vascular and lymphatic channels leaving the testicle. It also meant that my odds of the cancer having spread (despite the lack of any clinical evidence) were significantly higher.
2. I had a very malignant and aggressive histology (cell type). Waiting might be dangerous - especially since it could spread to my retroperitoneum and just about anywhere from there. It had grown from the size of a pea to the size of a grape in only 2-3 weeks - this scared me.
3. My tumor markers (bHCG and AFP) were normal even before my primary tumor was removed. This meant that these markers were not providing any valuable information - and couldn't be depended on as "barometers" of how much cancer was in my body.
Having decided to go forward with the RPLND, the next decision was "which surgical approach?" That is, traditional "open" surgery or the newer laparoscopic approach. I felt fortunate to have one of the leading practitioners of laparoscopic RPLND in the US (Dr. Kavoussi) at nearby Johns Hopkins in Baltimore. As part of my investigation, I also took a trip up to Memorial Sloan-Kettering Cancer Center (MSKCC) in NYC. There I met with an oncologist (Dr. Dean Bajorin -- who is prominent in the field and had been recommended by a friend) and got a second opinion on my original orchiectomy pathology. MSKCC's assessment of the pathology slides was basically the same as that of my local hospital except that they noted a very small component of seminoma. This new information was basically irrelevant since the treatment is always based on the most-aggressive cell type (embryonal carcinoma in my case).
As part of my research into TC, I had identified Indiana University (IU) as the single place with the most testicular cancer experience in the US. After intense investigation and discussions with Dr. Kavoussi at Johns Hopkins and surgeons at Indiana University (IU), I ultimately decided to go the "tried and true" route and chose "open" surgery. Probably the most important factor that convinced me to go with the open approach was a discussion with Dr. Richard Bihrle at IU. He described how they remove entire "packets" of nodes (including all the surrounding connective tissue) as opposed to the "cherry picking" approach used during laparoscopic RPLND. Even considering his bias, I found his to be a persuasive argument. Dr. Bihrle was also able to work me into his schedule earlier than any of the other surgeons I'd spoken to. Based on this and IU's reputation as a leading center of excellence in treating testicular cancer, I decided to have Dr. Bihrle perform my RPLND.
April 11: Retroperitoneal Lymph Node Dissection (RPLND)
After first thinking I would go alone, Liz and I ultimately agreed that she would come with me to IU and stay while I was in the hospital - at least for the first few days. We're far enough away that we had to fly there - and it's kind of hard to plan when you don't know how many days you're going to be staying. We also decided that the hospital was not a good place for our 4-month-old son, so we arranged to have Liz's parents come stay with him while we were away.
We arrived in Indianapolis the day before the scheduled surgery and checked in with the hospital and the hotel. Luckily I was able to meet Dr. Bihrle (he's a great guy) the day we arrived. I was afraid that I would only meet him face-to-face as I was being wheeled into the OR. After getting settled in, Liz and I went out for one last "normal" meal before my looming days of IV and/or hospital food. We had a very pleasant meal in Indianapolis and I bent the rules by having a beer or two.
Having read all about the RPLND - and how they slice you from the sternum to the pubic bone (with a detour around the navel) and shift all your internal organs around to get at the lymph nodes behind them, I knew this surgery was no walk in the park. I also knew that infertility (by way of retrograde ejaculation) was a possible side effect if they were unable to spare the appropriate sympathetic nerves. On top of that, I was in a strange city where I didn't know anyone and I'd only just met the wielder of the knife the day before surgery! All this combined to make me pretty tense. I wish I'd been scheduled for earlier in the day because the wait for my afternoon surgery was nerve wracking. I was going to be the last surgery on a Friday - and I remember worrying that everyone in the OR would be anxious to get on with their weekends and not be as thorough as they should be. (It's amazing the things that go through your mind when you feel like every step you make could mean the difference between life and death!)
Well, the surgery went fine. Dr. Bihrle came out to talk to my wife while I was still in the OR (presumably being "closed" by the underlings). He indicated that among the nodes he removed, he saw three that were "grossly positive". He also indicated that it took quite a while to get one of these nodes out because it was wrapped around the bundle of nerves that contribute to ejaculation. If he had accidentally severed this "bundle" (the one place where all the sympathetic nerves come together), I would certainly have been left with retrograde ejaculation (infertile). I later learned that he had taken out the nodes between the aorta and the vena cava (in the "middle") and the nodes on the right of the vena cava, but not those on the left side of the aorta. Some surgeons, upon seeing any visible evidence of disease, will expand to a full bilateral RPLND (taking all nodes in the retroperitoneum). Dr. Bihrle said it was a tough call, but he wanted to ensure that I retained my fertility. He did palpate (feel) the nodes on the left side and they all seemed fine.
When I regained consciousness, I actually didn't feel as bad as I expected to. This was at least partly due to the fact that I had been given the spinal painkiller (apparently similar to an epidural). I think I actually felt better than I did after the orchiectomy (temporarily anyway). Two things that I quickly became aware of were the tubes: A large one coming out of my nose and a much smaller one coming out of my penis. Over time, these tubes detracted significantly from the "comfort factor". I believe they were both taken out 1-2 days after the surgery. The removal was very brief but extremely uncomfortable in both cases - but it felt great to be rid of them!
My older brother had come in from Kansas City to visit me and was a great help during the days following the surgery when I was trying to collect my thoughts and questions about my situation. Since one of my nodes was 4cm in its largest dimension (this despite a clean CT scan 16 days earlier!), I was officially "upgraded" from clinical Stage I to pathological Stage IIb. On the 4th day post-op, I was discharged. The flight home was a bit uncomfortable but I made it home safely.
Believe it or not, the most painful part of my whole TC experience was a few days after I got home - when my bowels "reawakened" (NOTE: This is not at all typical!). When they physically manipulate your internal organs (intestines, etc.), your bowels tend to completely "shut down". They don't release you from the hospital until there is signs of the plumbing starting up again (the first "sign" is the passing of gas). I had been operating on the assumption that everything was OK, but on the 8th or 9th day post-op, I started running a low-grade fever. I was also feeling bloated and uncomfortable. Over the next several hours, I had lower-abdominal pains (like "gas pains" only 1000 times worse!) that were almost unbearable. I would try to move around to help things move, debated calling the hospital, tried suppositories, and everything! I was in so much pain that my feet and hands were tingling and I felt like I might pass out. All of this was made even more uncomfortable by the fact that Liz's parents were staying with us at the time (in our SMALL house). I won't go into the gory details, but ultimately the "log jam" was cleared. Afterwards, my fever disappeared and I felt so good that I couldn't believe it. I laid there on the bed in total bliss.
Now that the RPLND was over, I faced what proved to be the most difficult of all the decisions I had to make: Should I have 2 cycles of "adjuvant" chemotherapy to kill off any rogue cells floating around in my body (and reduce the likelihood of recurrence from around 50% to around 2%)? Or should I go into "surveillance" (watch and wait) and then receive 3 cycles of chemo if and when I had a recurrence? Both options apparently had virtually identical (very good) long-term success rates. I had left IU pretty confident that I would go through the 2 cycles of adjuvant chemo. After all, according to Dr. Einhorn at IU (a leading world authority on testicular cancer), my chances of recurrence without adjuvant chemo were around 50-60%. Also, I was very worried about chemo side-effects - and since they are cumulative, doing the 2 presumably tolerable cycles of adjuvant chemo now would hopefully ensure that I wouldn't have to endure higher doses of these heavy-duty toxins later. I'd receive at least 50% more (3 or 4 cycles) if I had a recurrence later. Finally, adjuvant chemo allowed me to plan for the treatment - and "schedule around" it.
But my decision was derailed when, while "interviewing" oncologists, I came across Dr. Edward Gelmann at Lombardi Cancer Center (part of Georgetown University Medical Center) who had a much different spin on things. His thinking: I had roughly a 50% chance of recurrence - which means I had a 50% chance of already being cured. I could look at it as a glass half-empty or a glass half-full. Since I'd only get 1 extra cycle even if it did recur, why not take that pretty-good-odds gamble now? If it doesn't recur, then I wouldn't have had ANY chemo.
Once my earlier justification had had a wrench thrown into it, I simply couldn't make up my mind. I agonized over it - after all, like every move I made, I felt that it could mean the difference between life and death. I asked my friends and family what they'd do. The responses were divided equally between the two options. I don't remember what finally got me off the fence, but after a truly emotionally draining and exhausting process lasting about 2 weeks, I finally opted to go for the more aggressive approach and have the adjuvant chemo.
Tip: Dr. Richard Bihrle at IU is a great surgeon and a great guy with a lot of experience performing RPLND surgery. I would highly recommend him.
Tip: Ask the surgeon to "close you" him/herself - and you might consider requesting sutures rather than staples. I say that because I ended up with a wide scar.
Tip: Get some oversized sweat pants with a drawstring waist for the trip home after surgery. It's very unlikely that you'll be able to get into your pants.
Tip: Try to wean yourself from the pain medication as soon as possible. For me, this stuff always caused constipation - and when you've got a healing incision from sternum to pubic bone, you DON'T want to be "dealing with" constipation.
May 9: Bleomycin, Etoposide, Cisplatin (BEP) Chemotherapy - 1st Cycle
I had selected the doctor mentioned above (Dr. Gelmann) as my oncologist for a several reasons:
Tip:1) He had been recommended by Dr. Bajorin at Memorial Sloan Kettering;
Tip:2) He seemed confident - and I liked the fact that he had challenged my thinking on the adjuvant chemo vs. surveillance decision;
Tip:3) He was at the Lombardi Cancer Center at Georgetown University Medical Center, a fairly respectable establishment that was convenient and would allow me to have my cycles through the weekend (they did BEP inpatient); and
Tip:4) He was the last oncologist I'd spoken to and was thus prepared to start me soonest (since I had agonized for so long over what to do, time was running short).
While all the above reasons may sound good, my experience with Dr. Gelmann was not good. I found him to be difficult to get hold of and if you did, I was not satisfied with his "bed side manner". It was 4 weeks since my RPLND, and Dr. Gelmann did not feel that it was necessary to do a baseline X-ray or CT scan. I felt that it was necessary because if there was any evidence of active cancer, I'd need to get 3 cycles instead of 2. So, I insisted on getting a baseline CT - and had it performed on Wednesday, May 7th. Then, I was to start the chemo on Thursday, May 8th. Well, after showing up on time and being made to wait virtually the entire afternoon for a room, the CT report came in as they were hooking me up to the IV. The report indicated a "small indeterminate nodule" of around half a centimeter in size located in my lung.
Now I really freaked out: "If this was really cancer, then I needed 3 cycles. If I start on the adjuvant chemo and the nodule is not present later, we won't know if it was an imaging anomaly or a small tumor that shrunk. Then I would only have gotten 2 cycles - maybe enough to knock the cancer down, but not take it out. Maybe the cancer would then recur in a more chemo-resistant form. Maybe I should just wait and verify what this thing is before I start." Well, the hospital staff, who were all ready to just hook me up and be done with me, didn't understand my concerns. They just decided I was overly "anxious" and asked me if I wanted some Ativan (anti-anxiety). This just infuriated me. I couldn't have a serious conversation with anyone because they were all just links in a hierarchy chain - with Dr. Gelmann at the top. I decided that I would not start chemo until I was able to speak to Dr. Gelmann personally about the scan and what it might mean (my "attending physician" had not been around yet).
A day went by (yes, A DAY!) before Dr. Gelmann decided to show up in my room. In the interim, one of the "Fellows" had compared my CT with the one done after my orchiectomy and noticed that this "nodule" had been there all along. So, by the time Dr. Gelmann showed up, I had already decided to go forward with the treatment. He was annoyed that a patient had insisted on seeing him (this ended up being the only time I saw him during my entire 6-day stay at the hospital)! In a classic example of his arrogance, he would reply to questions like: "So this 'nodule' is probably just a blood vessel or something?" with "There is no visible evidence of metastasis." No matter what I asked, he just repeated that phrase. Anyway, you'll have to excuse the rambling about Dr. Gelmann, but to this day, when I think about him, it makes my blood boil.
The only other incident of note during the rest of my inpatient stay was that they managed to destroy one of the veins in my arm by leaving in the IV too long. After I had noticed a similarly ruined vein resulting from the IV in my arm after my RPLND, I had been very concerned about losing another. Nevertheless, despite my suggestion to change the IV, they insisted that it was "fine", left it in too long, and the vein was lost.
When I got out of the hospital, it felt great to be back in the world again - despite how lousy I felt physically. My first return visit for my weekly Bleomycin infusion was uneventful at first. But later that day, I had a very strange "bubble-like" pain in my chest (right around the solar plexus). It was very painful and I was quite concerned, but by the next day, it had subsided. On my second return visit (for the final Bleo infusion of the cycle), it wasn't so smooth. The nurse came in after reviewing my blood counts and consulting with Dr. Gelmann and said that he had ordered that the Bleomycin infusion be canceled - and that my 2nd cycle would start a week late - both due to my very low white-cell count. Additionally, they told me that I was pretty likely to get one sort of infection or another - and that I should call them if my temperature went above 100.5. (I later learned that they could have potentially reduced my odds of infection by giving me Neupogen to stimulate white-cell production). Well, here's where having Friday as my cycle start day really hurt me. Of course Dr. Gelmann didn't return my call when I tried to talk to him about his decision. To make matters worse, I couldn't reach the oncologists at IU for a second because it was late on a Friday afternoon. So I had to just live with the decision until Monday.
Well, this was the last straw for Dr. Gelmann. I finally did reach an oncologist that I had met with during my earlier search. I told him about my situation - and that, despite the fact that I was in the middle of my chemo, I wanted to abandon Dr. Gelmann and switch over to him (Dr. Fred Smith). He understood (apparently Dr. Gelmann's reputation is pretty widespread in the Washington, DC area) and suggested that I go to the hospital the next day (Saturday) to get a shot of Neupogen - to boost my white-cell count and hopefully ward off any infection. Unfortunately, by the time I made it to the hospital the next day, I had already developed a sinus infection (and fever) and had to be admitted to the hospital.
On Monday, I reached Dr. Einhorn at IU and he said that the withholding of Bleomycin had been a mistake because Bleomycin has no effect on blood cell counts. But, since it was now 3 days after the date I was supposed to get it, he recommended just leaving it out, but stressed that I should NOT miss another one and should continue my 2nd cycle on schedule if at all possible.
It was in the last week of my first cycle when my hair fell out. I woke up one morning with that "sore scalp" feeling - like when you've ridden in a convertible with the top down all day. I suspected that the hair was about to go, so I reached up and gave a light tug to a small clump of hair -- and sure enough: out it came! I had been expecting this moment and so I wasn't too shocked at first. I actually had a party to go to that night and (partly out of fear) didn't end up taking a shower until the next evening. I got in the shower and rubbed my head under the water. Huge clumps of hair started dropping right off. Soon the drain looked like a small animal was lying on it. Despite the fact that I was intellectually prepared for it, this was a very disturbing experience! When I finally finished, there was a large bag full of hair and only a few patches on my head where the hair remained attached. I immediately got out the clippers and did what I could to remove what was left.
Tip: Do your chemo (BEP) outpatient as opposed to inpatient. Some of the reasons are described above.
Tip: Don't have your chemo (the 5-day infusion part of the BEP cycles) span the weekend. You end up being unable to reach anyone during critical times - and you end up being sickest during the work week (immediately after the 5-day infusion).
Tip: If you do have inpatient chemo, absolutely insist that they change your IV every 3 days (every 2 days is even better).
May 30: Chemotherapy - 2nd Cycle
My second cycle was under the direction of my new, vastly superior doctor. Since my cycles were starting on Fridays, I had no choice other than to stick with inpatient treatment (they couldn't do outpatient over the weekend). I had the treatment at another nearby hospital: Sibley Memorial. This hospital was also a huge improvement over the Georgetown hospital. I had a nice large room with a nice view.
The treatment was mostly uneventful with the exception of the difficulties that the hospital seemed to have performing the simple task at hand. All they had to do was administer the same amount of the same chemicals each day at roughly the same time. But this proved too difficult. For example, my start times varied - usually by no more than 2 hours, but one day by over 6 hours! Additionally, one night, the nurse came in and the cisplatin was in a glass container as opposed to the usual plastic bag. She hooked me up to the infusion pump, and I quickly realized that the setup did not allow any way for air to get into the bottle to displace the liquid. So what was happening was the pump was creating a vacuum inside the bottle. I kept trying to explain this to the nurse who would not accept it at first. Finally, she took the tube out of the pump and the vacuum in the bottle sucked the blood from my arm all the way up the line to the bottle! This kind of thing is the last thing you need when you're already worried about the treatment and its ramifications. This episode actually occurred on my last night in the hospital. I had decided to have my last day (of the 5-day cisplatin/etoposide infusion) done on an outpatient basis at my new doctor's facility. This one day of inpatient chemo convinced me that this was the way to go if I ever had to do it again. It was much more comfortable, you're back in the real world after each treatment, and they use small, painless "butterfly" needles in the back of your hand instead of the large "overnight" IV needles. The only downside is that, since you don't have the all-day saline drip going, it becomes your responsibility to remain hydrated (by drinking LOTS of water). This hydration is necessary to protect your kidneys from being damaged by the chemicals.
The evening of my second bleomycin infusion of the second cycle (day 8) I had another reaction to the chemical. This time, I was watching a video with my wife when I suddenly had bilateral pains in my middle back -- around the bottom of the shoulder blades and a few inches out from the spine. I figured it was in my lungs. Anyway, I remembered that I had also had a reaction to the day-8 bleomycin infusion during my first cycle (that time it was a pain in my chest and throat). So I mentioned this to my doctor before receiving my final bleomycin infusion on Friday, June 13th (yes, Friday the 13th!). He said that the difference between my day-1 treatments (to which I had no reaction) and my day-8 treatments was that for the day-1 treatments (since they also include cisplatin and etoposide), they do a "pre-load" of a steroid. So on my final (day-15) treatment, I was given a small dose of a steroid before the bleomycin, and voila! No reaction.
Tip: The steroid "pre-load" can help with certain types of reactions to Bleomycin.
Tip: Try to listen to those around you that you believe to be rational thinkers. It's very difficult to make reasonable decisions yourself when you truly believe that one misstep could mean the end of your life.
June 14: Chemotherapy is Finished and Surveillance Begins [Officially, the cycle ended on June 19th, but the last infusion was on the 13th.]
Dr. Smith is very conservative and has had me on a surveillance protocol that most would consider excessive. After my experience with Dr. Gelmann, I didn't want to argue with him - and besides, the overly conservative surveillance schedule fit my overly paranoid fears of recurrence (at first). Starting the month after chemo ended, I've had my tumor markers checked every month, and I've gotten a CT-scan of my chest, abdomen, and pelvis every quarter with chest X-rays on interleaving months. This was fine for the first 6 months, but after that, I began to think that this was overkill. I was especially concerned with the amount of radiation I was getting from the CT scans. I probably should have insisted on forgoing the last 2 CT scans, but I didn't. I guess I just didn't want to rock the boat. Immediately after my last CT scan, I posted an e-mail to the TC mailing list expressing my concern about the radiation. This resulted in new information coming to light - including the fact that CT scans involve a much HIGHER exposure to radiation than I thought. So now, I kick myself a bit for not refusing the CT scans.
Note: I called Dr. Einhorn at IU to ask about the nodule in my "baseline" (pre-chemo) CT scan, he said that I probably shouldn't have gotten this baseline - that it was unnecessary given my recent RPLND. Later he said that I shouldn't get ANY CT scans post-treatment (based on my particular situation) because they show so much detail that scar tissue caused by the Bleomycin might be mistaken for a tumor. So the bottom line is that I've now had 6 CT scans (1 post-IO, 1 pre-chemo, and 4 follow ups) where I probably should have only had 1.
I've now passed the 1 year anniversary of my diagnosis, my RPLND, and the beginning of my chemotherapy. This June 20th will be the anniversary of my first official day post-treatment. I've now dropped down to once-a-quarter X-rays & blood work. After a couple quarters of this, I will likely drop to once every 6 months, and then once a year. The various pains and tensions that I felt resulting from my RPLND are gone - as is the peripheral neuropathy (numbness) that I felt in my feet for several months following chemo.
I now feel better than I ever have - both physically and emotionally. While it's been over a year since I was diagnosed, I still think about my TC experience daily. I realize that a recurrence could happen at any time. In my case, I've actually got a higher likelihood of a new primary tumor developing in my remaining testicle. But as more and more time passes, rather than fearing doom around the corner, I feel incredibly lucky and ecstatic to be alive. Having to face one's mortality at a relatively early age is a serious wake-up call. When you're not sure how much longer you're going to be around, the things that are important in life - and those that are not - instantly become crystal clear. You also learn to appreciate and revel in moments of joy in your life.
My day-to-day life hasn't changed dramatically (yet), but I have. I feel that I've been given a second chance to live, and that I owe it to myself and those around me to really make the most of every moment.