The latest twist

The cool thing about hating cancer is that it never fails to deliver new and unexpected reasons to hate cancer even more.

Yesterday, I went to my post-chemo, pre-scan, check-in appointment (hate cancer, love hyphens) with my oncologist. It was to have been a simple, smile-filled, celebratory visit for B and me. There were smiles of course -- Dr. Miller's gentle kindness and sense of humor go a long way -- but we also dealt with concerns and (sigh) more shrugs and tests.

I have developed some skin lesions on my hands over the past week, and Dr. Miller referred me to a dermatologist for biopsies. I suppose "referred" is an inadequate word in this case. Dr. Miller managed to convince one of the city's finest dermatologists to see me immediately. I love that guy!

My crazy outbreak is apparently as fascinating as my crazy rare cancer: it seemed like a dozen folks (docs, nurses, techs, residents, etc.) came in to my tiny exam room to take a look at my hands (and repeat the same questions). All of them were professional, friendly, and very helpful. I continue to be impressed with the UofL Health Care system.

Here's a tip for people facing a future hand biopsy: when the doctor is choosing which lesions to cut off of you, offer some feedback. If the doctor wants to cut on the middle finger of your dominant hand, ask if he'll choose another location. You see, having a piece of skin cut off this finger will definitely affect your ability to use a pen or pencil. In a word: ouch.

Thankfully, I can still use a keyboard. Plus, I think I like having a bloody bandage on my middle finger as I aim it directly in cancer's face.

I'll get the test results in a week. Details will be posted here for your holiday reading. It's cool, all Christmas stories end well. Cheers.

UPDATE: results of the biopsies were fine, but it sure sounds familiar: I have a rare condition, and no one knows the cause. Idiopathic. Oh fun. The diagnosis: Sweet's Syndrome, which has been described as "is a reactive phenomenon and should be considered a cutaneous marker of systemic disease." Yes, that sounds about right. A week of prednisone cleared up the lesions on my hands and arms, but that drug made me crazy and angry. Or maybe the cancer and all he other stuff did that. Who knows. More shrugs. 

chemo is over

No more treatments. Chemo is DONE.

I am smiling.

I may have been quiet, but I STILL HATE CANCER

... and his body gradually grew stronger, the cancer surrendered and fled, life seemed to get better every day, and they all lived happily thereafter.




Or something like that.

Here's a more detailed, slightly longer summary of the past seven months. After leaving the hospital on April 24, I spent a good month at home recovering from the surgeries and working hard to eat, drink, sleep, walk, breathe, etc. with some degree of normalcy. On June 19, I "visited" my many friends in the UofL Hospital Radiology Department for a CT Scan of my chest, pelvis, and newly-remodeled abdomen. The scan showed no tumors, and to ensure things stay that way, it was decided that the next step would be six months of chemotherapy.

So, on every other Tuesday since June 30, I've spent about 6 hours at the Brown Cancer Center to have three chemotherapy drugs infused via a "Powerport" in my chest. And then there's homework -- I leave the place with a small pump strapped to my side infusing the final chemo drug (a brutal one named 5-FU) over a 24-hour period. Then, on Wednesday evening, a home health nurse arrives to remove the IV, check my vitals, review my side-effects, and wish me well.

For the next few days, I am couch-bound, weak, hurting, and useless. It was pure Hell for the first couple of rounds, and the side effects were so debilitating that I considered quitting the entire chemo plan. The doctors responded by cutting the dosage of the at-home drug: I'd now have a 24-hour infusion rather than the 48-hour infusion of the first two rounds. The lower dosage is much more tolerable, and I've been handling chemo well since then.

The anti-nausea and painkilling meds help tremendously, but they do rob me of any amount of energy I'd otherwise be able to muster. But I'm not complaining: the side effects aren't as bad as those endured by a lot of the other patients. I experience deep fatigue, body aches, soreness, nausea, extreme sensitivity to cold, and a slow, muddled brain. I can handle that. Plus I haven't lost any hair, and I don't "look sick" which helps tremendously. The "chemo brain" phenomenon is wild, though -- will make for an interesting topic of a future post.

Generally, by Sunday of chemo week, I feel better and start to regain energy. I feel really good by the end of those non-chemo weeks. Having a full week between treatments is great -- my body and mind seem to rebound fairly well, and the week of freedom allows me to live in a way that at least resembles my pre-cancer life. I love those freedom weeks!

I believe that this schedule is the reason that I've been able to tolerate the chemo so well. I think I'd be a very weak, sick, and angry person if I had to endure that poison every week. Instead, I'm strong, optimistic, and anxious to get back to living my life and having some fun. I'm doing all I can to make that happen soon.

In addition to the treatments prescribed by the doctors, I take supplements: curcumin, vitamin E, melatonin, GNC multivitamins, L-glutamine powder, and protein shakes. My main form of exercise is walking -- often, with my life-saving dog Guinness. I also do stretches and light strength training, and I get an occasional massage. Once the chemo is done and my port is removed, I'll be able to add quite a bit to the exercise regimen. More massages too. Definitely more massages.

As of this writing I have completed 10 treatments with only 2 more to go. I'm scheduled to start chemo #11 on November 17. So, if all goes as planned, I'll be done with this particular cancer chapter in about 3 weeks. The main thing to worry about is the potential for my chemo schedule to be delayed by a bad blood test, an illness (damn you, pig flu virus!), or some other health issue. It hasn't happened yet, and I don't expect it will happen now. I've been in semi-seclusion to avoid all the germs lingering in the outside world, and I'm eating well and working hard to get healthy. Living the life of a hermit has been rough on my psyche, but it's keeping me on my treatment schedule. And that's most important.

Ready for the end of chemo. Ready for 2010.

-Brian

April 24

Just a quick post to let everyone know that Brian is home now! He'll be on a feeding tube for a few more weeks to supplement his food intake. He is still very fatigued, but overall he is doing well and very glad to be back home.

April 22nd: A Turning Point

This will be a short but sweet post. Today has been the best day so far! Brian got both chest tubes out and the doctors feel that he is still on track to get home this weekend. His WBC is starting to decrease, his spirits are up, and his system is handling the food pretty well. He is finally starting to sound like himself again. Hopefully, the next time you tune in he will be at home.

Great news to share...Brian gets to eat REAL food for the first time tonight! He is breathing better and the doctors and surgeons are pleased with his progress. In fact, they think he will be able to come home on Friday. Between now and then they will be watching the drainage from his chest tube to make sure it tapers off. They do not want to send him home with those tubes still attached. The surgeon feels that even if Brian's WBC continues to be high, he will still get to come home because his team has addressed all of the issues they felt were potentially threatening to Brian's recovery. The surgeon told us, "We treat the patient not just the numbers."

April 19th

Brian's surgery went very well today. The thorasic surgeons were able to remove the infection without cutting into his lungs, which will reduce his recovery time. Two incisions were made and the surgeons used a combination of cameras and instruments to scrap the infection off of his left lung. As the surgeon put it, it was essentially like peeling the skin off of an orange. We anticipated that the surgery could take up to four hours but the procedure was complete in just a little under two hours, a huge relief for us! Two chest tubes were inserted in the back side of his left lung to continue draining any additional fluid, but if all goes well these should come out in a few days. They will be keeping him in ICU for a day or two for observation. When I left him tonight he was resting comfortably and breathing easier. Hopefully over the next few days, his WBC will decrease significantly and we can begin talking about getting him home!

April 16th

After several days of having a high white blood cell count (WBC), the doctors decided to do more testing to get to the root of the problem. As I mentioned in a previous post, the collection of fluid in Brian's abdomen is normal, but there is a chance that the fluid can become infected. Further testing revealed a bacteria in the fluid and proper antibiotics are being administered. Unfortunately, the medication has not been enough to bring his WBC down to a normal level. Another Upper GI was ordered to determine if there were any leaks in his digestive system, and a CT scan was ordered to inspect the rest of his chest abdomen and pelvis to look for additional, secondary infections. Results of the upper GI showed no leaks and the CT did not reveal other abscesses or infection in his pelvis or abdomen. However, the tests did reveal that infection has collected around his left lung. He has had a chest tube in his lung for several days to drain the fluid, but the fluid has become semi-solid and is not draining through the tube. The doctors also decided that the circumference of the catheter in his abdomen was not big enough to drain all of the infected fluid out, so it has been replaced with a larger drain. Immediately after inserting the new catheter, the fluid was draining in greater volumes, which is a good sign. As for the infection that has collected around his lungs, another surgery will be required to remove it. The doctors hope to make a small incision and use cameras to navigate around and remove the pockets of infection. While they are working to minimize the invasiveness of this surgery, they will not know how invasive it will be until they are able to have a look inside his left chest cavity. The surgery is tentatively scheduled for Saturday, and the doctors anticipate that this will extend his hospital stay by four or five days. On a more uplifting note, because there were no leaks revealed, the doctors are letting him drink clear liquids again. I've never seen a person more happy to get a Sprite.

While the prospect of another surgery is troubling, it is also a bit of a relief to have what we hope will be the answer to the question of his high WBC. I hope this will be the turning point in his recovery. Finally, while Brian is keeping a stiff upper lip he is mentally and physically exhausted. We love you all and there are no words to express our gratitude and appreciation for the kindness and support you have showed us during this struggle, but for now I ask that we hold off on any visiting until these complications are resolved. In the meantime, I will do my best to keep this blog as up-to-date as possible so that you are all in the loop.

April 14th

The past few days have been rough. After a really good day of feeling stronger, early Saturday evening Brian began experiencing sharp pains in the upper left side of his back and chest. X-rays revealed that his left lung was partially collapsed. The fact that he has had several organs removed causes the body to react by filling the empty spaces with fluid. The doctors have suggested that the lungs are reacting "sympathetically" to the fluid build up in his abdomen. Along with the body's natural response to the chaos it has been through, the thorancentesis introduced air into the area around his left lung, which may have also been pricked during the procedure. The pressure from the fluid and the air caused a partial collapse of lung. To combat the problem, they inserted a tube in his chest to release the pressure of the air and fluid, allowing his lung to re-expand. The tube will be left in until he has several days with no drainage of fluid. The procedure was very painful and he continues to feel quite a bit of pressure pain, but they are managing it with medication.

Sunday was a great day! I spoke to the surgeon who confidently assured me that the complications Brian is experiencing are normal and in line with what he anticipated for Brian's recovery. He even decided to start Brian on a limited amount of fluids by mouth. Unfortunately, Brian had a rough Sunday night. Between the pressure pain from the chest tube and the constant interruptions of doctors and nurses, he did not get much rest. The next morning, his white blood cell count had increased again. A CT scan was ordered and dye was injected into the drain in his abdomen to determine if the drain was properly placed and to determine exactly where fluid was coming from. The results revealed that the placement of the drain was fine, and as the doctors suspected fluid was collecting in the spaces where his organs used to be. They will also be analyzing the fluid to determine whether or not any bacteria is growing in the fluid.

Monday night was much better and Brian got plenty of rest through the night and into the morning. He has been up walking. In fact, today he took about a thirty minute walk. The doctors are working to get him home by the end of the week, but they are waiting to see a consistent decline in his white blood cell count.

Amidst the complications, I see excellent signs of progress. Brian's system is handling the feedings from his G-tube very well. In fact they have increased the feeding to his goal amount which was 50 cc's per hour. He is getting stronger and more mobile. If this trend continues we hope to have him home by the weekend.

Once again, thank you all for your love and support.

Friday, April 10th

Friday, April 10th

Dear friends and family, I'm sorry that I have been out of touch but it has been a rough couple of days, however I think we are back on track! After several days of tests revealing increasingly high white blood cell counts, Brian's doctors decided to run some tests to rule out infection and other complications. First they did blood cultures to determine whether or not he had an infection. This test involves swabbing a petri dish with some of his blood and then waiting to see if any bacterial organisms grow, thankfully there were none, but his white cell count continued to rise. The doctors decided to do further testing because while his white blood cell count was rising, he showed no other symptoms of infection (fever, increased heart rate). They were also concerned about leaks that may be present in the areas where the surgeons refused his bowels and stomach back together. The first test he had was an upper GI which did not reveal any leaks, the second test ordered was a CT scan of his abdomen, which revealed fluid build up in the left side of his abdomen. They inserted a draining tube to keep the area free of any additional fluid build up. Testing of the fluid revealed that it was coming from the pancreas, but the surgeons advised us that that this was common (as you recall, part of his pancreas was removed and it is still healing). In addition to the fluid in the abdomen, fluid was also starting to build up around his lung and the doctors felt it necessary to do another thoracentisis.

Once the fluids were drained, the doctors decided to start Brian on his G-tube (a feeding tube leading directly to his stomach). They also replaced his morphine pain button with a new pain medication called Roxicet (a combination of oxycodone and tylenol). The morning after they began the feeding tube, his white blood cell count finally started to decline. Unfortunately, he is still not able to drink any fluids.

While these complications have been worrisome, the doctors assure us that they very common. They are keeping a very watchful eye on Brian to ensure an optimal recovery. As of today, assuming this latest trend of progress continues, the doctors are predicting that he will be able to come home Monday or Tuesday with the assistance of home healthcare professionals.

Mondday, April 6th
Just returned from my afternoon visit with Brian and I continue to be amazed and encouraged by his progress. His NG tube (tube pumping fluids out of his stomach) was removed. It actually came out in his sleep last night, but docs say as long as he does not feel nauseous or sick, they will leave it out (it's just like Brian to find a way to take matters into his own hands to speed up progress). It was nice to see his face without any tubes attached. They gave him a blood transfusion while I was there today because his hemoglobin levels were down, but the nurses told me that was normal after major surgeries. Docs continue to manage his pain and he seems more comfortable. We are hoping that tomorrow they will start feeding him from the feeding tube that is going directly into his stomach. Keep thinking positive thoughts!

April 5th

April 5th

Today Brian was moved to a regular room and he began receiving intravenous nutrition (glucose, lipids, etc.). They also removed his catheter. He is still very fatigued, but is able to move around a bit. So far all is going very well. Not much else to report for today.

On the Road to Recovery

Now that we are out of the weeds, I’m doing my best to fill in for Brian and share what I can when I have a moment of “sanity.” First things first, Brian is on the road to recovery and that is our focus, but I do want to give our dear friends and loved ones an update. For any of you who may feel left out of the loop, I extend my apologies. This has been overwhelming for us and we (mostly me) are still learning how to communicate our challenges with those who love and care about us. It’s hard, the more you talk about it, the more it becomes real, and the more it becomes real, the more it becomes something that seems too big to manage, so since we arrived at University Hospital on April 1^st, I’ve just been focusing on getting through the obstacles that each day presents. Please know that we love you all, and there is truly no way to thank you for the tremendous love and support you have shown us throughout this ordeal. Through your prayers, positive energy and good wishes you are all playing a critical role in Brian’s recovery.

April 1^st Day One: The Mother of All Surgeries: This ain’t no April Fools Joke.

Brian’s surgery began at 12:00 noon. The plan was to remove all tumors, and then give Brian a heated chemotherapy treatment in his abdomen, a procedure called HIPEC . We anticipated that the surgery could take as long as 8 to 10 hours, possibly even longer but at quarter till 3:00, the nurses from the operating room came out to tell us that they were starting the chemotherapy treatment, the final stage of the procedure. Somewhere between 5:00 and 5:30, the surgeon came out to speak with our families about the outcome. He told us that Brian’s Appendix, Gall Bladder, Spleen, a small portion of the pancreas, a portion of his stomach, some of his diaphragm, the omentum (abdominal fat pad),and a portion of his colon had to be removed in order to get all of the tumors out of Brian’s abdomen. The surgeon had prepared us for this, but it was still very frightening to learn that so many organs had to be taken out. He informed us, and you all may know, that the appendix, gall bladder, omentum and spleen are not essential, and even though portions of the stomach and colon were removed, the surgeon expressed confidence that Brian would be able to return to a “normal” quality of life once he fully recovered. In the interim, Brian will not be able to eat or drink for 7 days and he will be on a temporary feeding tube until the internal stitches heal.

We all had many questions about Brian’s short and long-term recovery. Will he be able to eat normally (yes, but not big meals)? Will he need more chemotherapy? (possibly, but they won’t know until further testing is done once Brian is recovered), When do you estimate this started (probably around 2007)? On a scale of 1 to 10 with 10 being the worst, how does Brian’s case compare to others you have seen? (4 or 5) How long will he be in the hospital (at least a week)? Of course we also had questions about the cancer returning down the road, but the surgeon felt it was premature to discuss long-term concerns. He emphasized the importance of focusing on Brian’s recovery from the surgery, as it is one of the most difficult surgeries a body can go through. After his recovery we will begin talking about expectations for the future. He encouraged us to call anytime with our questions or concerns.

Brian spent about two hours in the recovery room, and around 7:00 I was able to see him. He was still very groggy from the anesthesia, but not too groggy to ask me to tell the nurses to “stop with the Robert shit,” (for those of you who don’t know, Brian’s first name is Robert, Brian is his middle name). I was encouraged, he clearly had not lost his feisty spirit. At 8:30 they took him to ICU. He was stable and doing very well, but the nurses and surgeons wanted him in an area where he could be closely watched. He wrestled with intense pain (and thirst) through the night. The pain they were able to help manage, the only relief for his thirst though were moistened swabs. I stayed all night and as the morning approached Brian was resting more peacefully.

April 2^nd Day Two

When I returned the next day around 3:15 p.m., Brian looked great and was in good spirits. His color had returned, and most of the post-surgery swelling had gone down. His incision looked clean and healthy. He was nodding off a lot, but in between nodding off and waking up he was talking and making jokes. It was a dramatic improvement for the first day after major surgery. Later that night the nurse had him up and sitting in the chair for about an hour. Overall, a good day and great first step toward recovery.

April 3^rd Day Three

When I arrived at the hospital, the dressings for Brian’s incision had been removed so that it could begin to heal. He was still in relatively good spirits, but was in a bit more pain than the day before. He had a rough night because the nose tube for his oxygen came loose in the night, and he struggled a bit to get deep breaths. The next morning when they took his chest X-ray (they do this every day to monitor his respiratory health), fluid had built up around his left lung. The doctors and nurses assured us that this is a very common occurrence post surgery because the cells in the body are working overtime to heal the body which sometimes results in excess fluid. Brian was taken to radiology for a thoracentesis (draining the fluid from around the lung). Once the fluid is drained, the lung begins to expand, which is unfortunately a very painful process.

After such a dramatic improvement the previous day, it was hard for Brian (and us) not to experience the same dramatic improvement on the second day. But, the doctors, nurses, and his surgeon, reminded all of us that his body has been through a lot and that some days may be better than others. It doesn’t mean that he is not progressing well in his recovery. In fact, they assured us that he was doing very well. Moving forward, the nurses advised Brian that he needed to make sure he was using his “pain button” every six minutes to help keep him as comfortable as possible. When I returned to the hospital later that night, Brian seemed much more rested and in better spirits.

April 4^th Day Four

Brian is doing GREAT today. His breathing has improved dramatically and so far the fluid is not building back up around his lungs. For the past several days his heart rate had been running a little high and he was receiving medication to help lower it. Today his heart rate has slowed back to a more normal level even without the medication. He looks a lot stronger and a lot more relaxed. He told me he slept for 12 hours last night. They have taken off the lower leg cuffs that help with circulation (at least during the day) and they are starting to wean him off of his oxygen. They are even talking about getting him up to walk to day. Everything considered, today has been filled with significant signs of progress. I'll be going back tonight and will report more if anything changes. Keep sending us your positive thoughts and energy, it’s definitely working.

The countdown to surgery

On Wednesday, March 11, thanks to our UofL connections and friends, I was accepted as a patient of Dr. Donald Miller, Director of the Brown Cancer Center on the UofL Health Sciences Campus. I personally know two cancer survivors who were treated by Dr Miller. They have only good things to say about him, as does everyone else who has met or been treated by the man. Read about him here: Dr. Donald Miller.

Upon meeting him for my first visit (March 17), I immediately felt comforted. After all the travails that led me to this point, I finally felt safe. I know I'm in good hands.

He ordered a biopsy under (another) CT scan to be drawn from my big tumor in the center of my abdomen. He wanted to confirm the diagnosis -- in fact, after hearing of my adventures with the gastro and others, he said "you don't have a diagnosis yet." I did the CT biopsy without incident on March 19. Worst part was the wait AFTER the biopsy procedure: they were concerned about bleeding, and I had to wait for 4 hours in a recovery room. Thankfully, the NCAA tournament started that day and I was able to watch basketball and chat with the staff for distraction.

March 20 I had a PET scan: Sat for 90 minutes while an IV-injected radioactive sugar circulated throughout my body, then I just lay in the tube for 30 minutes. Simple and easy. And expensive! I'm getting high dollar treatment.

Follow-up visit with Dr. Miller on March 21 was about 10 minutes long:

• biopsy confirms the diagnosis

• my case has been quite a topic of conversation at the Cancer Center all week

• I need to see a surgeon, and get surgery scheduled.

• Just prior to my visit, Dr. Miller had called a surgeon that he said he "would send my own son to"

• He had already scheduled me to see the surgeon at noon THAT day. Good man. Powerful man.

So, I met the surgeon that day. Got some facts on what to expect (see the sidebar for surgery and recovery estimates), and began the process of preparing. What a ride it's been.

How Did I Get Here, Part 2

March 5:

CT scan was quick and painless. The technicians were great and friendly and I was making them laugh – especially prior to the scan itself. Once it was over, and they were sending me on my way, I sensed a marked change in their demeanor. They didn’t make eye contact after the scan, and there seemed to be a troubled tone in the way they sent me on my way with a “good luck.” It was probably unreasonable for me to “read” too much into the way they were acting after performing the scan, but I left the hospital that day thinking for the first time that I was a very sick man. This was a Thursday afternoon, and I would spend the entire weekend dwelling on this feeling. Thankfully, I had my wife and our friend Karen to distract me and remind me that at this point we still know nothing. But that was one rough weekend of fear.

I should point out that throughout this early process, I had been taking copious notes on my Blackberry rather than watching the clock as I sat in all those waiting rooms and/or waited for the phone to ring. It was my distraction, and it’s also the reason I’m able to recount all these details for the pre-diagnosis narrative.

I’m about to discuss the post-CT Scan period. This was a frustrating couple of days. After having spent a week undergoing 3 tests, I needed to know what was next and when I should expect to hear something. If nothing else, I knew that the “biopsy” tests from my abdominal fluid had been made available to the doctor. I just wanted someone to tell me what to do next – do I need to schedule an appointment to talk to the doc? Is there something that can be done on the phone? What should I expect and when? That’s all I needed. I got conflicting answers from the each of the three different office workers that I spoke with. I nearly flipped out.

Rather than drafting some complete sentences and assembling a paragraph, I think I’ll just copy/paste the notes I wrote on my Blackberry during that period. Here you go:

Hosp says the CT scan and report will be ready, and doc is in their network -- able to read it all online. I should expect a call frm Gastro’s office on afternoon of Fri Mar 6.

Friday, Mar 6: 10am spoke to main reception person. Sees my results are in docs
”cubby” and will leave a message for someone to call me with results today. 4:40 pm I make follow-up call - what do I need to do?? sched an appt? Can anyone else read the test to give me any info?? Answer: no sir, looks like Monday. FUCK! All weekend to deal with the unknowns.

Monday, 9: spoke to yet another secretary(?) at 1pm, told her about all the tests that have been performed and the complete lack of answers or follow-up. They'll call me back (yeah, sure) today on cell phone. I called back at 4:30 – and got an answering machine/service. Total runaround and lack of attention is taking a massive toll on my mental state. Falling apart, quietly and privately. Must stay strong for B.

Tues, March 10: I just completely begged and hassled doc’s personal secretary by phone midday. Threatened to be in their office all day Wed. if I don’t get someone to tell me what to do next. Told her I’m never more than 10 minutes from their office. Not sure if she took that as a threat.

Tuesday March 10, 2009:

Gastroentorologist calls my cell phone at 10pm and explains that he had to do a lot of research and make some calls to determine my condition. He explains that it has taken him quite a bit of time -- “well, this was a tough one to figure out. I’m sorry to call so late. I’m just trying to catch up on things. Uhhh, ummmm. Well, this is a very rare….” etc. -- before he finally tells me that I have cancer. I have to walk HIM through the “conversation” – and I’m the patient! Weeks later, I can empathize with the guy. He was clearly in way over his head in diagnosing this rare disease. But after days of silence I had lost all confidence and patience. So, when he began stammering his way through the early parts of the phone call, I’d had enough. Just give me the damned facts, I recall saying. Why do I have to be the one to hold his hand through this?!?! What an ordeal. I finally make him spell the name of this thing, tell him to get all my records and tests together and ready to be transferred by mid-day Wednesday. I then say let’s both work (independently) on finding an oncologist for my next steps. Thanks, doctor. Good night.

I do not sleep that night. I would barely sleep at all over the next few weeks.

How Did I Get Here, Part 1

This rather long first post will be devoted to a narrative of the process before my diagnosis - the symptoms I experienced, the actions I took, and my reactions to how my case was handled.

In all of my research and tracking of symptoms, I had NEVER come across mention of PMP, my eventual diagnosis. So, I’ll offer this initial long-winded narrative in the hope that documenting the symptoms may provide some help in developing an understanding of the condition. There are only 1000 cases a year of PMP, I’m told. If you’re one of the “lucky” few facing this possibility, I hope this may help.

“Something is wrong with my body” - Fall 2008.

The only real symptom that I ever really experienced throughout this process was a big belly. For the past 7 years or so, I’ve been in fairly good shape. Not in consistently great shape, mind you, just healthy compared to my earlier days. You see, I was a chubby kid, then I was a somewhat overweight adolescent, and then I was maybe 20 pounds overweight during my college years. In 1997 at age 26, I was looking better but was still a bit chubby.

I really got in shape in the early 2000s. Side note: a big factor for this was actually a prolonged period of unemployment. In October 2001, I was laid-off from my job at a small project management firm who lost all their big clients after the 9/11/01 terrorist attacks. I found myself with lots of time on my hands, no money to spend in bars and restaurants, and very low self esteem. The only outlet for my energy (and way to feel good about myself) was to start a fitness regimen. I was a temp, worked a few side jobs in construction, did some free-lance writing, and built a few websites for cash. It barely paid the bills, but I still collected enough money to buy a kayak. So, I spent a summer kayaking and enjoying the outdoors with my other unemployed friend Ryan (who would eventually get cancer, too, DAMN IT). Working on physical fitness was rewarding when nothing else seemed to be. I felt good about my body for the first time. And I stayed trim and at a good body weight for quite some time.

In August of 2004, I finally landed a permanent great job. For the next few years, I worked long, often stressful hours and spent most of my time in front of a computer screen. Gradually my main exercise became stress-relieving walks around a college campus, replacing the treadmill and weight training I’d previously done 3 days a week. So, I was less fit than during the unemployed days, but I still succeeded in staying active and eating a healthy diet. 5'7" and around 145 pounds. Maybe 150 during football season. Sunday beers, you know.

The bottom line of this long-winded narrative (get used to it, folks!), is that it became surprising (but not entirely unheard of) when, in the fall months of 2008, I began to develop a belly. Hey, it happens to all of us as we get older, right? What seemed strange was that I still had pronounced abdominal muscles. Granted, I was in my mid-30s and never really had 6-pack abs or anything like that, but I had relatively low body fat and was carrying no excess weight anywhere else on my body.

My good friend Nikki dubbed the belly my “beer muscle” – my gut had the general shape of a “beer belly” but I still had visible abdominal muscle definition and was still skinny in my arms, legs, butt, etc. It was as if my abdominal muscles were being pushed from behind – as opposed to being covered by a layer of stored fat. Turns out that was exactly the case, when months later the problems were finally diagnosed. Patience, dear readers - all will be revealed.

Despite this weird phenomenon, I was still trying to convince myself that I was simply getting older and my body was responding by storing “hard fat” deep in the tissue rather than as subcutaneous fat. Here’s the kicker: around September-October, after some intense dieting and increased exercise, the belly was actually getting bigger while the rest of me was shrinking. Clearly, this was something different. Something is wrong with my body.

In November 2008, I started to develop recurring heartburn for the first time in my life. I’ve always had an “iron stomach” – I’ve always loved to eat very spicy food and never suffered for it, and I could drink alcohol and never have an upset stomach or a hangover. I would vomit only on the rarest of occasions. Heartburn or acid reflux? Never! So, now I had a big belly, a skinny body, and bad heartburn. Again, it was if my insides were being crowded – my theory was that there was just such pressure in my abdomen (from fat... bloating... something else?), that the stomach acid was now being forced up into my esophagus. There was simply nowhere else for it go. The refrain repeated: something is wrong with my body. Thus began the search for a doctor (I hadn’t seen one in years), and more intense research into these symptoms.

Side note: I had a great team of friends helping me with research into my symptoms. One of my dearest friends is a highly accomplished university professor with a stellar record of scholarship – medicine is not her primary field but she knows how to conduct research. And her mother is a retired nurse with a life-time of medical experience and medical research books in her home. These two were researching and “discussing my case” several days a week throughout the process, and I was doing my own amateur research using Google and the hundreds of medical sites on the web. Let me state the obvious: all that web-based medical info in the hands of a paranoid half-wit like me is an invitation to torture. Everything seemed within the realm of possibilities: an ulcer, gastritis, liver disease, stomach cancer, you name it. It was driving me insane, but I knew that thorough research was necessary - I wanted to be fully informed and ready with practical reasoned questions for the doctors I was to see.

Enough is Enough: “The Medical (Mis-)Adventure Begins” - Jan and Feb 2009

After being unable to fully enjoy the holidays, I decided I’d had enough. It wasn’t getting better, and it was time to get some answers, solve the mystery, and fix myself. New Year’s Resolution: Find a good doctor and be back to normal by the end of the year. That was the resolution then, and it remains in effect to this day. Even now, as I’m staring down the barrel of a loaded cancer gun, I know that I WILL be well again. I may be missing a few parts, but I’ll be well.

The first week of January 2009:
I hadn’t seen a doctor in many years, so I had to find a doc. My wife’s doc was too busy to schedule me for a few months -- no thank you, I need to get the ball rolling now! So, I went to a doc that my mom seemed to like. The doctor heard me out, palpated my distended belly, ordered full blood work, and took some abdominal and chest x-rays. An H. pylori infection (ulcer) seemed plausible, and the blood test results would tell us in a few days. Meanwhile, he offered this: “take Prilosec for the heartburn. You know, you’re in your late 30s now and our metabolism tends to change around your age. I think you may just be getting fat.” My response: a desperate chuckle. Then I took off my shirt, showed him my visible ribcage, reminded him of the muscle loss, pointed to the distended belly, and said, “I’m not fat. I look like I’m 8 months pregnant! I don’t think you should ever mention metabolism to me again. You just call me as soon as the blood tests are in.”

It was a few days later that some person from his office called to tell me, “The blood tests all came back good. No infection, no ulcer.” Uhhh… okay. “So what now?” I ask. Her response: “Is the heartburn medication not working? We could try another prescription or maybe you could see another doctor if you want. If you’d like, I could tell the doctor to call you tomorrow to talk about options.” Well, yeah. That might be nice – please have him call my cell phone the next day, and we can move on to the next step.

Well, the following morning, I got the call during my drive to work. A call not from the doctor -- from the same woman with whom I’d spoken the previous day. Her greeting: “So, what’s going on?” As if we’d never spoken. Ugh. My response: “What’s going on?? Well, the same thing that was happening about 15 hours ago when I spoke to you. You offered to have the doctor call me to discuss the next steps and options to explore. So... what? I suppose I’m ALLOWED to talk to YOU only? Do I need to make an appointment to actually speak to an M.D.?” Her response was essentially the same: “Well, ummm… do you want me to see if he’ll give you another heartburn prescription, or recommend a gastroenterologist?” Uh, no. Thanks for all your help. I’ll take it from here, thanks.

My reintroduction to the medical world was valuable – from this point forward I would have no expectations, and I would be prepared to fight for any and all information and attention. A valuable first lesson.

Deciding to blog

A blog?? My personal information on the internet?? Uh… I’m not so sure about that.

I’ve always been a rather private person. After a childhood of general “shyness,” I grew up to be a guarded and private adult. Even in the most public of settings and social situations, I’ve always been more prone to sit back, observe, and listen those around me than I am to interrupt a conversation and say “ohhh, pay attention to me! Check out my story!” That’s just the approach I prefer. After all, I find other people to be much more interesting than I am – I KNOW my own story, tell me something new!

I know a few people whose lives are an open book – who freely share intimate details with even casual acquaintances. I am NOT that type of person. So, the decision to take my story to the web was not an easy one to make. I’ve been on social networking websites since they first hit the scene years ago, and for the longest time, I used an alias and never even posted a photo of myself. For years, my avatar or profile picture has been of a cartoon: Brian the dog from Family Guy. So, it’s quite a leap of faith for me to choose to reveal my personal thoughts and stories in a public space. But I’m glad I reached this decision. In the weeks and months ahead, the blog will be my best opportunity to actually “be myself” and spend time with my people. So, here we go…