I don't know when the back pain started exactly. It was early June; my son was just a few weeks old. It was nothing to fret about; I was frequently sitting in uncomfortable positions at night holding him for long periods as he slept or I tried to get him to sleep. Weren't all new parent's backs sore?
In the meantime my 4 month follow up was scheduled on June 14, which entailed my first CT scan since the "NED" (no evidence of disease) scan on February 2nd, and another chest x-ray followed by an appointment with my oncologist, Penn's Dr. David Vaughn, one of the country's foremost testicular cancer experts.
I worked from home on the morning of the 14th, had lunch, and headed to Penn's Abramson Cancer Center for my CT scan and chest x-ray. As I handed over my paperwork to the woman at registration the red ink caught my eye; "Do Not Eat or Drink 4 Hours Prior." Damn. I just ate lunch. 4 hours would put me at the end of the day--too late to then meet with Dr. Vaughn to discuss the results. Embarrassed, I told the woman across the desk that I had eaten lunch. How could I be so stupid (my thought, perhaps her's too)? She made a call to check; yes, the scan would need to be rescheduled. Please go home. Angry (at myself). Frustrated (at myself). Damn.
I didn't care that confirmation of my healthy state had been delayed, I was just upset at myself for the loss of time; the additional work to be missed when the appointment was rescheduled, the stupidity of my not remembering that a CT scan requires I not eat, the embarrassment of having to share with anyone that knew the scan had been scheduled that I had blown it. But NED was still in the building; any contrary thought had not yet entered much less traversed my mind.
Back to work, CT scan, x-ray and Dr.'s appointment rescheduled for the 21st. Annoying, but over. Move on.
Back pain is still there. Waking me up at night. Must sit up for relief. Need to see my wife's chiropractor, but she's the opposite direction of work, so not really possible for me to visit on a work day. In the meantime, rub it a bit, stretch; it's fine.
While brushing my teeth before bed on Thursday, June 17th it hits me like a freight train. I've felt this back pain before. This. Exact. Pain. Not long after my orchiectomy (removal of my testical) and cancer diagnosis, just before I started chemo I developed a strange pain in my back. Right side. Near the spine. Only really hurts at night--but so much it wakes me from a sound sleep. My oncologist explained that it was the tumor in my Retroperitoneal lymph nodes pushing on my back muscle--which it didn't do when I was vertical. As I recall, the pain was gone after my first day of chemo.
Damn. Not good. But a tumor doesn't equal cancer. My testical was mostly cancerous, but included some tissue called "teratoma" which is not cancerous, but can spread with the cancer, and is not affected by chemotherapy. I knew that one risk was that there could be teratoma remaining in my lymph nodes which could grow and would then have to be surgically removed. Surgery ("RPLND"; more on it in some other post) would still be better than chemo. So yes, the tumor is back, but that doesn't mean I've relapsed.
I shared this "news" with my wonderful and amazing wife. She was concerned. It wasn't clear to me how concerned until the next morning--Friday June 18. I was at work, headed into an 8:30 meeting. She wanted to move my scan and appointment to today from Monday. We shouldn't let this uncertainty linger over Father's Day weekend. Shoot--I just ate some yogurt. CT scan has to be at 12:30 or later.
Out of my meeting at 9 AM and she's on it; we appear to be all set, I just need to get back up to Philly by noon to check in. Oh, and don't eat or drink anything else.
Doubt is creeping in. Am I the 1 in 10? It has to be someone. Why me? Damn. Why me.
Chest x-ray done, drink the chalky liquid, CT scan done. More waiting--but it's late, no time to eat as it's time for my Dr.'s appointment. Since my wife is my son's sole source of food and he eats frequently, she can't really join me without him, and I don't think she should bring him to the oncology office. Seems like a bad environment for a baby. Or maybe the patients won't appreciate a crying baby. She called to say she'd like to come, but sadly I missed her call. It was stupid of me to worry about bringing a healthy baby to my appointment. Cancer isn't contagious, and cancer patients like babies just as much (or as little) as non cancer patients. Cancer sucks, but babies can't see that. Lucky for them.
Check in, labs, wait. In comes Dr. Vaughn. I can't read him. He asks some questions about the back pain. What does that mean. Time to cut to the chase; "Is it back?" "I'm afraid it is." Damn. Thoughts go to the worst case. My wife, facing life alone with two young kids. I had wanted to get more life insurance before we had a second, but the disease came upon me before I had a chance too (I was diagnosed in the first trimester of his gestation). Would she have enough. I want to see my kids grow up. I don't want to die. Thoughts really racing now. Should she sell the house. School district sucks. Get them somewhere good where she doesn't have that as a worry. I want to see my kids group up. I want to be their Dad.
Regroup. Think. Questions. Could it be Teratoma only, and not cancer? Well, possibly, but highly unlikely. We'll get your markers (testicular cancer produces markers in some people that indicate it's presence, one of which happens to be the the same hormone that pregnancy tests look for in urine). If the markers are up, that confirms that it's cancer, if they're not, well, that tells us nothing. My markers were elevated prior to orchiectomy, but dropped to normal after despite the fact there was cancer in my lymph nodes.
So, if markers are normal, we'll biopsy. If cancer is confirmed, we start "Salvage" chemotherapy--a protocol called TIP--followed by RPLND. If not, we skip straight to RPLND. If it's cancer & we do chemo, why RPLND this time? You've recurred--we need to be aggressive now. Can I call my wife?
Tough to tell your wife your cancer is apparently back over the phone, but my wife is a champ; she was awesome about it.
Got some more details. Dr. would call as soon as labs were back--probably on Sunday.
I suppose my daughter had never seen us cry before (at least not that she can remember--we cried together a lot in her first few months of life; see the other blog if you wonder why), but when I got home she immediately knew something was wrong. Grandma shuttled her away, and let my wife comfort me.
I'm sorry I've brought this disease into our life. I'm sorry I put you in this position. I'm sorry. Time to be sad. Regroup. Go see Cailin and embrace her. Tell her Daddy is sick but will be OK, and let her work her incredible magic on me. That child could make anyone smile on their very worst day, and that was one of mine.
So a sad Father's Day weekend plodded on. We waited for the call, and on Sunday it came. Markers are normal. Upon further reflection, he was nearly certain it was cancer and felt we should proceed with salvage chemotherapy. Teratoma doesn't generally grow that fast, and a biopsy wouldn't be absolute; if it showed only teratoma it would leave open the possibility that cancer cells were present but had simply been missed by the biopsy needle. We asked if he'd support us getting a second opinion at Memorial Sloan Kettering and he said yes, and that he thought that was a smart thing to do if for no other reason than to give us peace of mind. His office would help with the arrangements on Monday, and we'd move forward with planning from there.
That week was frantic and tense. I had to pull my medical records together, get all my imaging, get my pathology slides, and get them all to NYC ASAP in advance of a not-yet scheduled appointment.
In the meantime, I also reached out to the folks at Indiana University, where the treatment for Testicular Cancer was discovered by Dr. Einhorn, and where Lance Armstrong was treated. They got back to me quickly; with the details I had provided (which were limited) they wondered if RPLND might be the right first step. They agreed that Dr. Einhorn and Dr. Vaughn would exchange e-mails about it. Wow; the guy that figured out how to treat this, personally responsible for saving tens of thousands of lives every year since the early 70's is going to discuss my case with my oncologist free of charge, tonight, without an appointment, without a referral, just because I asked. BE YOUR OWN ADVOCATE, and know that Doctors by and large are simply good people, and want to help you if they can.
One of the highlights of that week for me was taking Cailin downtown that Monday to get my records in preparation for our still-unscheduled trip to NYC. She was entertaining everyone everywhere we went. She had recently mentioned she wanted to be a doctor. How she came up with that answer (she's too young to even understand the question!), I don't know, but while waiting for the folks to find my pathology slides, I asked her what kind of doctor she'd like to be. "A purple doctor." She does love purple.
On Tuesday word from my doctor that based on the input from Indiana, he'd had a surgeon at Penn look at my films, and he didn't like what he saw. The tumors were large and located in difficult places, making RPLND more complex than normal. I'd likely lose a kidney and have additional complications. It would be better to shrink the tumor with chemo first if possible.
Well, the two most experienced RPLND surgeons in the US are at Indiana and Memorial Sloan Kettering. We checked, and our appointment at Memorial, which was now lining up for Thursday, would include a surgical consult if the oncologist (Dr. Bosl) felt it was appropriate, so we were covered there. So we called Dr. Foster's office in Indiana. They said he would look at the films if we sent them. After a frantic rush to burn extra discs and a law-violating drive to the UPS store, films and records were in the mail to Indiana.
Based on the fact that the 2nd opinion at Memorial was set for Thursday, Dr. Vaughn penciled me into to start cycle one of TIP salvage chemotherapy on Friday so that we could waste no more time if that was the path forward we selected.
By 3 PM the next day Dr. Vaughn had an e-mail from Dr. Foster--the surgeon in Indiana. More input provided without payment, out of the kindness of his heart, and within hours of him receiving the films via UPS. Wow. He concurred with Penn's surgeon, the size and location of the tumor increased the risk of surgery. He thought a biopsy should be reconsidered. Dr. Vaughn began pursuing that for us. My wife posed great questions (two minds are better than 1!); when could it be scheduled? Not until early the next week. When would we have results? 3 to 4 days. We'd lose more than a week, whereas if we just started TIP like Dr. Vaughn suggested, we'd be a week in by that point, hopefully making some progress on defeating the cancer.
I told Lauren I thought it was clear; TIP starting Friday was the right way to go--unless Dr. Bosl at Memorial had a drastically different recommendation. She had reached the same conclusion.
Off to NYC on Thursday. We drove, and took the baby. He was great; slept through the entire appointment, and only cried a tiny bit in the nearly empty waiting room. Dr. Bosl was amazing; the community of TC experts is an impressive group in my experience.
It was cancer. Somehow that was good news to me. In Dr. Bosl's view, teratoma doesn't cause pain--it just moves out of the way, and is a sort of soft tumor. Pain is caused by nasty cancer cells irritating the muscles they sit on at night. So my back pain was key to his diagnosis. I don't think the doctors in Indiana even knew about the back pain (they were at great pains to counsel me that they did not have all the facts!), and while Dr. Vaughn doesn't seem to totally agree that pain means it's not solely teratoma, having Dr. Bosl's certainty was incredibly comforting.
He carefully explained his approach to treating recurrent TC, how and why there are some differences to the way it's treated at Sloan versus Indiana, and carefully and clearly answered every one of our questions. And he recommended TIP followed by RPLND. Same as Dr. Vaughn. As planned for me to start the next day in Philly.
Sold.
We have a plan, two of the country's leading experts on this disease agree that plan is the one and only right plan for me. Dr. Bosl's data suggests that my chance for cure without relapse is 63%. Dr. Vaughn estimates 60%. It's not 90%, but it's also not 37 or 40 %. And I'm determined to be on the good side of the odds this time.
We enjoyed a relaxing dinner at a Mediterranean restaurant around the corner from Dr. Bosl's office, Lauren fed our son, and we drove back to Philly.
Initial assault on my recurrent cancer planned, fully validated, and set; TIP assault launching from the Hospital of the University of Pennsylvania on June 25, 2010.
