Chris Brewer's TC Story...

Chris

I can basically describe myself as (pre-TC) 33 yrs old, 6'2", 230 pounds, in excellent health, married, with 4 kids. I am a Master Sergeant in the USAF, and no, I did NOT do regular self-exams for TC...on Sun, Oct 6, 1996, I woke up with a feeling in my scrotum as if I had been kicked in the balls a few hours ago--you know, that dull, achy feeling. It wouldn't go away and the next day I went to see a doctor (Physician's Assistant) at my base's clinic. After a quick check, he detected a painful lump on the back of the right testicle, suspected a cyst (because it was painful) and referred me to get a sonogram followed by an appointment with a Urologist.

Four days later I had my sonogram appointment -- and the first indication something was seriously wrong. The technician doing the test started off all cheerful and such, then as he moved along he changed to a more serious nature, finally going to get the radiologist. They started talking in clipped tones (as if I wasn't there) until I finally started demanding to be clued in (lesson #1 learned - when in doubt, ask! - it's your body). He told me there was a non-fluid mass inside the right testicle, that he could not make a tissue diagnosis (urology would have to do that), but that at my age I had to be concerned about TC -- and I got concerned, on the spot!

So then I sweated a 3 day weekend, learning as much as possible about TC through various sites all over the internet, and the more I read the more certain I became that I was now part of this august body more commonly known as cancer victims. Tuesday, Oct 15 finally came and I had an 8:00 appointment at the Brook Army Medical Center (BAMC) here in San Antonio. Dr. Cornum kind of chuckled when I told her that I was probably there for a TC diagnosis--then she saw the sonogram, quickly concurred, and said to get ready for my removal surgery (called an Inguinal Orchiectomy)--this afternoon! My life got real busy real fast as I was poked, prodded, X-rayed, and admitted.

Being fairly young and in good shape, I opted for general anesthesia although they told me they usually did a combination of an epidural (spinal) injection plus other meds to make you real drowsy--my view was if I could avoid a needle in my spine and get the same result, sign me up! My wife went and met our kids from school and told them what was happening, and I called them just before going in to surgery to reassure them as best I could. At 4:00 I was wheeled in and told the surgical team "You know, I'd give my right nut to know whether or not I have cancer.." then drifted off to sleep and awoke an hour later sans my right testicle...quickly called my kids and immediate family to let them know I was still kickin', then a few hours later went for an abdominal CAT scan. Let me tell you, that first getting up out of bed was NO fun, although the head rush was kind of cool. The CAT scan procedure went OK, I ate half a meal afterwards, but sleep was fitful despite 2 Percocet pain killers. I experienced no nausea whatsoever but my energy level was low and what was there ran out quickly.

In the morning the surgical team came by and told me that everything had gone fine and that based on a visual look at the tumor, Dr. Cornum suspected it was a non-seminoma. She added we wouldn't have anything concrete until the pathology results came back in 3-7 days--great, more waiting! My post op instructions were: no lifting anything heavier than 10 pounds for 4 weeks, home rest for 7 days, Percocet prescription for about 2 days, and to keep moving--don't just sit on my butt! I managed to take a look down south and see the 4 inch incision rising along my "bikini line" towards my thigh, then hobbled over to the bathroom and ensured my plumbing still worked! I was getting better by the hour and was discharged from the hospital 24 hours after I walked in, with a follow on appointment in 3 days. I left walking under my own power, with little thought of anything more than a comfy chair and some relaxation. In retrospect I probably should have hung around in bed for another 6 hours or so to build up some more energy, but I wanted out -- ASAP.

The effect of telling my friends and family I had TC ranged from shock to total disbelief...everything happened so fast and furious that I found it easier to be very blunt up front, telling everyone that 1] I was fine 2] I will be OK and 3] I have TC. Laying it down like that got everyone over the initial hurdle quickly, and from there we could move on to whatever needed to be discussed. Spiritually, I got a lot closer to God despite plenty of self-inflicted hypocritical feelings about needing Him in bad times and going my own way in good, but that's another story altogether...let's just say it helped--a lot. My moods were about 90% upbeat, damn near humorous--I have heard TC patients come up with a slew of jokes, so many in fact that's why I created the humor section here...the other 10% was pretty desperate as thoughts of death, not seeing grand kids, leaving my wife alone, etc. crept in when I let them--which wasn't very often. At 33 I guess I still feel pretty bullet proof, but now I know enough to wear Kevlar just in case!

My first few days of recovery from the IO operation went fine, I did as much as I could but that wasn't a lot...energy came and went, but each day I got more mobile and less painful. The follow up appointment was pretty uneventful, no path results other than the initial CAT scan reading showed no definite enlarged lymph nodes--very good. Both the doc and I do expect another fairly serious surgical round to go "digging for lymph nodes" (called an RPLND) following confirmation of the non-seminoma, just got to get those tests in before the plan firms up. I have immersed myself into the Internet even more to learn as much as I can, to include research, joining email digests, and setting up this site. I feel like I can't learn enough about this thing inside me, literally trying to kill me, and that furthering my knowledge improves my destiny, and being ignorant decreases my chances...

Monday I got the call I had been waiting for--the pathology results are back. The verdict, as expected: I have a non-seminoma embryonal carcinoma, believed to have been encapsulated and at Stage I, but we're awaiting a little more slicing/dicing to be sure. That means radiation is out of the picture, chemo to still be determined. Further looks at my CAT scan by everyone and their mother at BAMC now indicate what could be one enlarged lymph node on the left side--current thoughts are this is a "red herring", because if the C's already spread, it should have gone to the right side, and not the left. My chest X-ray is clear.

We are awaiting one more blood marker test (alfa feto protein - AFP) that will indicate whether or not the Cs still in there somewhere and producing, or if it was confined to the testicle only, as she suspects. That'll be back in a day or 2...if the AFP level's still up there, I face a dose(s) of chemo before the Retroperitineal Lymph Node Dissection (RPLND op or "digging for lymphs")--I WILL be having this op, possibly as soon as next week. Nothing I was not suspecting, and now I know the road ahead. I guess this is good news, although I would've gladly taken a total medical mistake and a "we're sorry we removed your cystic nut" apology!

The RPLND
My doc called late Tue afternoon--we're a go for the RPLND next Tue...wow...but the good news is, NO CHEMO, for now, anyway...now all I have to worry about is the effects of a deep, 18 inch incision down the front of me--yikes!

Thursday afternoon I had a pre-op counseling session and quickly exam. I feel pretty good that Dr. Thompson, Chief of Surgery here at BAMC, will be the lead surgeon. Dr. Friedrichs, my other surgeon, went over the RPLND procedure, possible complications, expectations, and potential follow ups thoroughly--I again opted for general anesthesia and passed on the needle in the spine epidural. For a detailed explanation of the RPLND--click THIS...the thing that is most important here is that we took the time, over 1 1/2 hours, to discuss whatever was on our minds until we were all settled. Communication strikes again!

Here it is, the Monday before the "big op"...had to go do some pre-op blood work for tests and potential blood matching in case I needed an unlikely transfusion during the surgery. I am staring at a gallon of Colyte (atomic powered?) laxative / bowel cleanser that I have to drink within the next 3 hours--in it's entirety, along with 18 pills of Erythromycin and Neomycin Sulfate. As the doc told me "Aren't we nice? In addition to slicing you down the middle, we're gonna give you the worst case of diarrhea you ever had first..."! My mood's pretty good, been doing whatever I can to wrap things up before tomorrow...

Here's some of the reality things I have had to do: Got my Will in order, made sure we had a Medical Power of Attorney good to go (kinda like a Living Will, but my wife plays a big part in the decision making), and spoke to my wife about my desires for how I wanted any life insurance money spent...sure, facing up to some mortality issues is NOT festive, but they are very necessary.

Tuesday -- I was not nearly as nervous going in as I was for my orchiectomy--I was now familiar with the docs, the hospital, where I would stay, etc. I once again elected to have General Anesthesia vs. the preferred epidural (no needles in the back for Chris), and again remember nothing save for casual conversation in the pre-op staging area. Once that Verced (sp?) kicked in, I was gone...

I awoke 7 hours later in the recovery room, warm, very fuzzy, and NOT comfortable in the stomach area! I was barely cognizant of getting to my room or what was being said around me, but I comprehended enough to know it had gone quite well--I was just glad to be alive...I had a Foley catheter in my penis draining urine (thank God I wasn't awake when THAT went in!), and an IV in my left arm for fluids and on-demand Morphine.

The team came in a short while later to tell me they had found one definite left node with C in it (confirmed by a frozen LND pathology on the spot), and had harvested numerous others for more detailed testing over the next few days. They told me I was going to be OK, but in a Morphine induced state that night, I convinced myself I was dying from cancer--not believing otherwise until I grilled the doc later on during her morning walk through! With that weight lifted off of me, I got down to the business of recovery...

I finally got the nerve to lift my sheets and look down, where I saw a bandage that went from the middle of my chest and disappeared further than I could lift my head. Despite liberal use of the Morphine pump, I was very aware of the wound down my middle, and any attempt to move, twist, or (God forbid) cough was met by an instant sharp pain down the front where I was convinced that all 44 of my staples would go shooting about the room like shrapnel from an explosion! The day after the op I was told I would get out of bed, and by mid morning, with the help of a large male nurse, I did manage to get all 230 pounds to the vertical.

Being horizontal or vertical wasn't that a big deal--but the transition to and from SUCKED! You just don't realize how much your abs are involved in everything you do...I managed 1 lap around the nurse's station every 3 hours the first day, using Morphine before and after each trip. Unlike the orchiectomy, where I got better by the hour, with this op you get better by the day, evidenced by my ability to do 2 laps every 2 hours on the second day, 2-3 laps every hour the third, and whatever I felt like days 4 and 5.

My other "torture devices"(!) were the breathing device (I forget the medical name) and the circulation leg wraps. With the breathing device, I had to exhale to move a plunger to a certain mark and hold it, 5 times an hour--this hurt, especially in the early stages, but I have been told it is an effective way to avoid pneumonia, so I did it anyway...my leg wraps were hooked to a circulation pump that cycled through 3 different inflation sequences, keeping the blood moving while I was immobile in bed and used to prevent blood clots from forming in the legs...they also do a darn good job making you sweat like a pig and awaken you in the night, too!

The catheter was removed on day 2, and yes, it stung coming out(!). I was told it would not go back in--provided I peed within 8 hours! If not, back in it went, but this time I'd be fully conscious! Yikes! Let me tell you, I was one motivated cancer patient, and was quite successful within hours...save for the last day, the entire time I was in the hospital I was on a fluid IV with no food until my bowels "woke up", a normal 2-3 day process enhanced by walking and detracted by narcotics (like the Morphine). I set up a personal game plan to manage pain fairly regularly in the initial days, then throttle back as exercise became easier, and it worked quite well. Speaking of plans, here's some tips I wish someone would've told me before going in:

Sorry to have drug on with this, but I think that reading of one person's experiences helps out those who go after me...by day 5 I was feeling pretty darn good, eating real (hospital) food, had followed all the docs orders to the best of my ability, and it paid off--I was home that evening, still pretty weak, but home--and that's what's important!

Moving on to Oncology
Had my first meeting with my "Onc Doc", Dr. Sanchez, a few days after getting out of the hospital. Pretty big day as we're going to discuss what they found and what the future holds for me--hell, yes, I'm nervous! I had heard that these types of counseling sessions were a definite mental roller coaster ride, and I now know why.

Here I am, feeling still sore but overall OK, and I am watching folks go by with their oxygen tanks, walkers, wheelchairs, bald heads, thin bodies -- is this what's in store for me? Then wait, wait, wait, wait...and in we go to see the her. Dr. Sanchez is a very positive person, and started off by saying "We will cure you!" -- accurate or not, it was pretty confident and put me at ease. But one of the things I will never, ever forget was that she added "But I need to tell you something: If this was 1980, I would probably be giving you a death sentence." Hey, I was alive in 1980! Talk about dodging a bullet...Anyway, we went over the results of all the tests so far, and everything was looking real good: blood work, check!, RPLND pathology: 1 positive out of 31 samples, check! All good and looking at 2 sessions of chemo and you'll be done...where's that Chest X-ray? "Should be digitized", I tell her, adding that 3 docs have already told me it's clear...

"OK, I just want to see for myself" she says...wait, wait, wait...."Chris, you better come back here..." SHIT! Now what?! Every step I take, I get more and more nervous..."See this spot on the bottom of the lung in these 2 shots? It's not supposed to be there..." Arg! What does this mean?! Do I now have lung cancer? Am I facing MORE surgery?!

The doc then went on to first chuckle and say 1] they have to do a CT to see of it's anything first and 2] if it is another tumor, it just means 3 chemos instead of 2! Whew....

Did the CT a few days later -- results: NEGATIVE! Yes, yes! Woo-woo!

Now what? Well, I had to do some preliminary lung tests to establish a baseline...seems one of the chemos occasionally can cause fibrosis, and they need to know where I started from, just in case. Went and visited the Oncology Ward where I'll be staying during the inpatient portion of the chemo, and got to discuss the process with a guy who was actually in "mid-chemo". I have made a point to know as much about all the possibilities that can happen to me, and I encourage you to do the same -- taking the surprises out helps, a lot. Found out that I am now one of the RPLND induced "blank shooters" (retrograde ejaculation)...the flag still goes up the pole, it just won't come off the rope...I am hoping this is temporary and will discuss it with my surgeon next week!

My Chemo Experience - Round 1 of 2

Checked in Sun, Oct 10 in the later afternoon for "prehydration" at Brook Army Medical Center. Weighed in, thinking I had dropped about 5 pounds -- try 22.5! Wow...down to 213....had a catheter IV inserted into my left forearm and the juices started flowing (Sodium Chloride with Magnesium Sulfate and Potassium Chloride at 125 ml/hr). This would be the standard flow between chemo sessions. Slept pretty rotten, from midnight to 6 am, never more than 2 hours continuously, nerves, I'm sure...although long term sleep in the hospital never really happened, in retrospect!

Early in the morning we started what would be my normal "BEP" chemo regimen, lasting about 9 hours per day, for the next 5 days:

  1. Hydration -- the Sod Chlor bag, 900 ml at 300 ml/hr
  2. Zofran -- a small bag of effective antinausea medication, plus Decadron, a steroid helper for the Zofran
  3. Chemo #1 - Platinol (also called Cisplatin), 50 mg -- Manitol, a medicine designed to help you excrete toxic substances, and more Sod Chlor 250 ml, for 1 hour
  4. Chemo #2 - Etoposide (also called VP-16), 230 mg, Sod Chlor 500 ml, lasting 2 hours
  5. Post Hydration - Another Sod Chlor bag, 900 ml at 300 ml/hr
  6. After each Chemo session, it was back to the Sod Chlor bag for maintenance fluids for the duration.

Over the next 3 weeks, I also receive Chemo #3, an IV injection of 30 units of Bleomycin on days 2, 9, and 16.

I had no initial reactions whatsoever after each bag got hung, other than peeing, peeing, peeing--which is just what they want you to do, flush that stuff out of the system! It's kind of ironic seeing the nurses come in wearing very protective gloves to protect themselves from the poison (OK, medicine) they're going to stick in your veins, but there you are....anyway, as I said, I just started having some minor cumulative effects after the first few days, so here's a quick run down:

I walked as much as I could, the docs really encouraged me to do this, and I found my short time "off the IV leash" for a shower and quick step outside to be the highlight of my day! I made so many laps around the ward and nurses station, I think I dug a trench around the ward!

Post Chemo

It's been about 2 weeks since my first inpatient chemo session, and while I look towards then next session with more than a little dread, I am comforted in knowing it'll be my last. My first days home were the roughest--I had no energy and threw up for the first and only time so far. My damn sense of smell continued to work overtime, and I literally went around the house and stuffed anything that offended me into a closet for the time being! (Yes, it drove my wife crazy)

My appetite started to come back after a few days--as my sense of smell dropped back into normal ranges, so the ability to eat increased, too. I found my energy levels came and went in waves in the first week--I was worried about being anemic, but my blood work checked out fine, and I chalked it up to post-chemo lethargy. As my energy level increased in duration, I also increased my exercise regimen. Walking's still the primary means, but I finally got back into the gym and started LIGHT weight lifting after about 3 1/2 weeks after the RPLND surgery. When I say light, I mean it: I was almost benching 300 pounds pre-TC--I can hardly get 135 off the bench now! Sheesh...but it'll come back, just takes the same dedication I had before, and I am convinced that being at that high level of strength before this all started has had a dramatic effect on my ability to heal quickly, too.

Does chemo make your hair fall out? Well, here it is, 10 days post chemo, I go into the bathroom, wet down my hair, look in my hands--HAIR, lots of it! Grabbed a handful and pulled gently--poof! out it painlessly came...told the wife about it, she didn't believe it until she did the same, then thought it was pretty funny. Anyway, there's no way I am going to look like the proverbial dog with mange, so I broke out the clippers and razor and finished what the chemo had started--Telly Savalas, here I come, at least for a month or so (I hope)...

My Chemo Experience - Round 2 of 2

Back to the shack (read:hospital) for another 5 days of fun and dripping...things started to sound "iffy" even before I got back in the hospital, though. At my outpatient Bleo session, the Onc nurse noted that my white blood cell count had taken a nose dive, and this trend continued in the initial check-in blood work at the hospital. I had become "Neutropenic", meaning my white blood cells had fallen below normal ranges, also called "hitting your nadir". This got me my own room(!) as a precaution against infection, plus a really cool(?) surgical mask to where whenever I venture outside. They also had to decide if they wanted to put off the chemo for a day or so, and maybe give me a dose of Neupogen to help out with the white blood cell growth. Other than this, my bone marrow is showing signs of recovery and I am as healthy as I have been since my pre-cancer days--save for the strength loss as a result of limited exercise. Attitude's up, weight's stabilized around 212-215, and spiritually I am thoroughly confident, too.

After much doctoral discussion, they decided to go ahead with the chemo as scheduled. This decision was based on my youth(!), good health, and a desire to keep to the BEP chemo schedule, with an aim to wipe out any lingering TC as soon as possible. Mainly owing to how good I feel, I concurred with this plan of attack. They also added that if I got a "neutropenic fever" or any other infection, they'd hit me with some heavy duty antibiotics that should knock it out. That lead to me asking about what happens if/when I bottom out in a few weeks and I am at home. The doc told me another nadir was to be expected, and they'd be watching my blood work very carefully for the next month or so. Also, if I do get sick at all, I am to come in and get checked out to see if I'll need re-admitting--there's something I could do without! But I'll be good and follow the doc's orders, they've kept me alive this far...

The routine's pretty much identical to round one, although they have knocked an hour off the front and back end heavy hydration, which is fine with me...I did notice a very slightly uneasy stomach late in the afternoon of day 2, and that continued through the night. I asked the ward doc for some Torecan, and that seemed to quiet things down. By the afternoon of day 3, I was still a bit queasy, and dinner wasn't real festive--I ate only half. I have been taken off of neutropenic precautions, but they're giving me Potassium and Magnesium supplements due to low levels in recent blood work.

I have found that once you know your Chemo Protocol, it is good advice to keep an eye on the staff applying it. While I had no serious problems, I did occasionally have to remind what them what the flow rates needed to be set at, go hunting them down when the IV bags were almost out, and I suggested hanging a new saline bag right before sleep so I got several hours of sleep instead of just a couple -- then getting woken up for a new bag hang...

The evening of day 3 saw some slightly heavier stomach upset, and a definite change in my mood to one of flat cranky...this was further aggravated by the pharmacy not delivering my saline bag in time and having to stay up till past midnight, I was a pure joy to be around--not...I got very little sleep and started drinking hot tea in the morning along with another Torecan. Went for my now normal 30 minute walk around the hospital, but still don't feel quite 100%, understandable, I guess.

One of the ward docs came by to check on me, I'm still a bit cranky, but other than that, fine...he told me about a young 21 year old guy who I had met the last time I was in here. He has non-gonadal carcinoma, a rare form of TC that spreads like fury once it kicks in. I had heard that he was on the same chemo regimen as I was, and that hopes were high for him--but then when the chemo kicked in and started shrinking the tumors in his chest, they pulled away from the lungs and started lots of bleeding--he's not expected to make it through today...damn, 21 years old -- this is exactly why TCRC exists and I encourage everyone to get the word out to every guy they can...Dr. Barnes came by in the afternoon to tell me all my blood work was looking fine now -- but that Private Morris died this morning, 5 minutes after being taken off the ventilator...

Day/night 4 was pretty typical: mostly boredom set off by near bouts of nausea. Torecan took care of the upset stomach, and I finally got a full bag of saline hung for a good night's sleep--then woke up every 2 hours to go pee! Sheesh...got up pretty early Day 5 to start my routine off and get that chemo flowing ASAP. I was the proverbial caged cat for this last day--fairly typical for me as I literally count down the time to my never-to-come-soon-enough release!

Of course, I finally did get out of there, but was already noting a kind of "punched in the gut" feeling leaving the hospital. The Torecan worked a little, but it wasn't long before it was not doing the trick at all. Spent a REALLY miserable weekend, alternating between lying on my back (the only comfortable position), then getting up and throwing up or dry heaving! To add to my family's joy, I was a real bastard, mood-wise, too..

Monday came and I headed right back to the Onc Ward, bad smells and all, feeling like I was seasick and the swells were a-rolling! Grabbed a familiar looking doc and reminded him how he told me: "If there's anything we can do, come on back...", well, here I am. They switched me to Zantac 150 to stop the acid build up in the stomach, then to Decadron, a steroid, that he "guaranteed" would relieve the nausea...took the meds ASAP, went home, crashed for a while, and within 6 hours was not entirely a new man, but a reasonable facsimile thereof...

Tuesday and I am feeling about OK (80-90%)...went in and had an uneventful outpatient Bleomycin chemo treatment, 1 more to go, and that is IT! Then I just have to do testing, testing, testing, and all the joy of waiting for results that comes with it...

The holiday seasons are now over--and SO ARE MY TREATMENTS! I have not felt this good in a long time: mentally, physically, and spiritually. Two and a half months since this odyssey began, and I am glad to report I am back at work, back in the gym (I am weak--approx 50% of where I was pre-TC), and back in church...this is not the end of my story, though, just the beginning, actually. First tests are scheduled for Feb 97 as well as surgical follow ups, and a lot of working out to build back the stamina and strength that this thing has robbed me of...

Well, here it is March 1997...I got my first post treatment check up in February -- all green lights, we're talking cancer-free! (Although they did lose my AFP test for a few days - that was stress I could've done without!) TCRC continues to grow, we did Lance Armstrong's "Race for the Roses" charity ride for his foundation, we're establishing relationships with many folks who are working to get the TC word out -- it's a great time to be alive and we'll keep on keepin' on...

July 1997 - as usual, more significant happenings related to TC. While not directly a result of cancer, my wife and I separated for over 3 months, and were near divorce. I could go on about attitudes and new focuses and stuff like that, but for now (as we enter our 3rd week of reconciliation) I will just quote something Lance said to me: "Relationships are a two way street." We both have things to work on, but the good news is we are doing just that...

Health wise, things are a hoot! 2 for 2 in post TC check ups - no cancer in this little puppy. I have grown back all the hair I had before, and aside from the ever present vertical reminder (my RPLND scar) you would never know I had been sick. I think I am actually in better shape than prior to having TC - but it has been a LONG road back. Doug Bank has become the official editor of TCRC, and we are starting to get some recognition from folks who have been involved in this fight a hell of a lot longer than I have. Recognition is not important to me personally, but it does get our cause noticed more and more - and therein lies the rub...

October 1997 - hard to believe I am nearing my one year anniversary. I am now the web designer for the Lance Armstrong Foundation (www.laf.org), my family is going strong, TC-NET has over 200 subscribers [Editor's note: As of May 2000, TC-NET has over 450 subscribers!], we have 5 top TC docs "on call" to help out on the tough questions, I have joined the American Cancer Society as a guest speaker, and I think I can safely say Doug and I have been able to help out hundreds of folks since we got this thing rolling. I tell you all this not to blow my own horn - but to show you what you can do if you put your mind to it! A year ago I thought TC was just something cops got from using radar guns, now I know more abut this than I ever wanted to, but I wouldn't trade it for anything. Cancer sucks, but I believe it is beatable and that it's a fight worth fighting. I hope to be a contributing part of this battle, in whatever form it takes, and encourage you to do what you can too.

Thankfully, to be continued....


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