Days 16 - 23 - The Routine Begins

Ok, I'm way behind on these postings so I'll try to bring you all up to date as quickly as possible.

Day 16 – This day went exactly as planned. Mostly uneventfully. I had blood labs drawn at 8:00; saw the Doctor at 9:00; and started chemo right around 10:00. As it turns out, my hemoglobin was fairly low (7.5) which as Dr. Chin put it is really borderline. But instead of delaying chemo in favor of a transfusion, the doc decided to go ahead with the chemo and keep me on schedule. The doctor decided to start me on a low dose of only one medication to see how well I would tolerate it. Chemo went well and I didn't get sick at all during the actual infusion and I felt pretty good afterward. It wasn't until Friday (the next day) that it hit me. I got very tired on Friday and started to feel fairly sick on Saturday. On top of that, I collapsed twice on Saturday after having climbed the stairs.

Day 19 - By Sunday I wasn't feeling any better and my lightheadedness continued. Mel called the Oncologist on call and chatted with him. They decided that I should head to the emergency room. That visit revealed that my hemoglobin had dropped even lower to 6.7. The decision was made to admit me and give me two units of blood. I was all for the transfusion but not so excited about having to stay overnight to do it. In any case, my hemoglobin level came up to 9.5 and I was released on Monday.

Day 23 – Back to the Cancer Center for another Thursday round of labs, doctor, and chemo. The blood work showed that my hemoglobin had held it's level. This is good news as it means there is no major internal bleed. The doctor decided to keep me on the same dosage of chemo. Again, the actual infusion went very well but the two days following were pretty much the same as last week. I slept through most of Friday and today I've been fairly sick most of the day. I also stood up to fast a little while ago and collapsed again. I do hope that doesn't mean my hemoglobin has dropped again. Time will tell. I get labs again first thing Monday morning and see my Kidney doctor on Monday afternoon.
I'll know then what my blood counts look like.

Interesting side note -
On Day 16, Mel took a form for the Family Medical Leave Act with her that the doctor needed to fill out. We left it with the nurse and she returned it all filled out while we were waiting for chemo. We decided to leaf through the document while we were waiting. All the questions were very neatly and succinctly answered in what was obviously the nurse's immaculate handwriting. That was until we got the last page. There at the bottom was a space for the doctor's official diagnosis and signature. This is were the doc had scrawled (in typical doctor handwriting,) “Patient has terminal stomach cancer.” Now up to this point we had been using terms like inoperable and incurable but no one had yet used the term Terminal. It's not like we didn't know that, it was just a little shocking to see in print like that.

And for those who have offered help of rides – I'm looking for a one way Monday afternoon ride from my house in Goose Creek to Mel's office downtown on Wentworth (right next to Andolini's.) I need to leave Goose Creek around 2:30 and arrive about 3:00. Mel gets out of work at that time and she'll drive me to my afternoon appointment and then home.

Be Well
Chris

Day 9 - The Plan

OK, so I'll just dive right into this (as there is really only a "deep" end.)

This morning Mel and I drove down to MUSCs Ashley River Tower so I could get a CT scan of my chest, abdomen, and pelvis. Other than the really disgusting stuff I had to drink before hand, this all went off without a hitch - lasting only about 10 minutes total for the scan. We then moved the car to a different garage a couple of blocks away so as to access the Hollings Cancer Center. This is where my first meeting with Dr. Chin the Oncologist was to happen. Everything timed out perfectly and we arrived right on time. Oh, interesting side note and the first benefit realized from my Handicapped placard - they can't charge you for parking in downtown Charleston if you're handicapped. Free parking - find that in Boston!

In any case, we met with Dr. Chin. We both liked him very much. He seems more than qualified and didn't talk down to us. And, as Mel says, "He doesn't look twelve" like so many of the doctors I saw while in the hospital did. Here's what I we know:

I've got Stage IV Adenocarcinoma. The tumor is located on the top outside of the stomach near the bottom of the lungs and the liver. The tumor is surrounded by fluid that contains abnormal cells. It's because of this fluid and the spreading cancer cells that the cancer is considered Stage IV which essentially means it is in-operable. At this point, surgery is not an option and most likely never will be. A cursory look at my CT scan shows no cancer in either the lungs or the liver but there are some "suspicious" masses growing on the outer lining of my small intestine - further analysis is needed. As the only true cure for Adenocarcinoma is surgery and as that option is not available, we will concentrate on prolonging my life (at a decent quality of living) for as long as possible. How long that will be remains to be seen. There are five types of chemotherapy that are useful against this type of cancer but two of them rely heavily on the kidneys to filter them out so we'll avoid those until my kidney function edges back closer to normal. Of the other three, two are filtered primarily through the liver. We'll start by trying one of these and then, depending on how well I tolerate it, move on to a cocktail of two or three. Usually the chemo would be administered every two weeks, but given my weakened state, the Doc decided it would be better to administer lower doses weekly. He thinks I will tolerate it better. I go back in a week to have some blood work, review the treatment plan with Dr. Chin, and then receive my first dose of chemo.

I think that's everything. Keep the good thoughts and prayers coming.

Be Well.

Chris

Day 1 - And So The Journey Begins

Yesterday, August 23, 2010, Mel and I arrived at MUSC's Ashley River Tower at 7:00am so that I could have an Endoscopic Ultra Sound of my stomach. This test was ordered because of a 6 cm polyp that was discovered during a previous Endoscopic foray into my GI track. The Docs got a piece of the polyp but they weren't convinced they had the whole story and wanted a better look. The EUS would afford them the opportunity to see through the stomach lining and into the tissue beyond.

We were registered quickly and taken back to the prep/recovery area. An IV was started and some blood was taken for labs. Everything was going as planned until the labs came back. It turns out my hemoglobin was too low (6.2) for them to do the procedure. The EUS would have to wait until after I could get a couple units of blood transfused into me. The good news from the labs was that my kidneys were working well enough for me to not need dialysis (for those who are keeping score, I haven't needed dialysis since last Wednesday - yeah!) At first the plan was to admit me to the hospital for the transfusions and do the EUS the day after but Mel put her foot down and said, "No." She made them figure out a way to do everything as an outpatient (thank God she was there.) And, in fact, once they had done as she requested, it turned out that I could get the blood I needed and still have the procedure done on the same day. So I sat for about three hours in a most uncomfortable reclining chair while the blood slowly dripped into my veins. For those of you who have never had a transfusion, let tell you that there is no better drug for making you feel better, stronger, healthier than human blood. It really is the elixir of life. Before my transfusion I could barely make it from the wheel chair to the recliner - afterward I felt like I could jog back to the waiting room. Great stuff blood - those vamps know of whence they speak.

But the transfusion is not the reason for this diatribe. No the real story lies in the results of the EUS. The procedure itself went quite well. I was put under a general anesthesia (thankfully) and the whole thing came off without a hitch. The procedure took about an hour from beginning to end and this afforded the doctors plenty of time to poke and prod and snap pictures and buy souvenirs and try to find a reason to justify this little trip into my digestive tract. As it turns out, the doctors did find something. Just beyond the lining of the stomach and under a layer of muscle is a layer of cancer cells. They took a biopsy and we'll hopefully know more in the very near future. It is quite possible, and most likely, that this stomach cancer is the reason I've been having so much trouble with my stomach. Now I'm in a holding pattern waiting to hear from the Oncologists so we can develop a plan of attack. Generally the protocol is to try and shrink the cancer and then remove it surgically. Thankfully at least my kidneys seem to be rejuvenating themselves (knock on wood - please!)

I've fought the big C twice before and won but I was a much younger man then. I'll fight this as fiercely as I can but, to be honest, I'm not sure how much fight I've got left. Sometimes, when you dodge a bullet, you end up leaning into another one - one that takes its time manifesting its injury.

Keep the good thoughts and prayers coming. Mel and I are really going to need them. And for those of you in the Charleston area who want to lend a hand in some way - I could use some help finding weekday rides to and from the hospital so Mel doesn't have to give up any more of her vacation time.

Be well.

And The Beat Goes On

Well the verdict is technically still out – but my prospects look good. Last Monday morning, I went in for my triple bypass surgery. I was taking into the operating room about 7:30 and came out around 1:00 or so. It all went fairly well though I did require three units of blood and two units of platelets. Afterwards, it took a while for them to get my ever dropping blood pressure to stabilize. But, in the end, everything came together and I was transferred out of ICU on Wednesday and sent home last Sunday.

I’m still quite sore and my energy level is very low, but I feel stronger with every day. My usual routine has me taking the first part of the day fairly slow – resting, reading, or watching a movie (or two.) Then, when Noah gets home from school around 2:00 or so, I get more active. This has me up and about when the family is here instead of being exhausted when they’re at home. At the doctor’s suggestion, I’ll start taking short walks every day and increasing my distance gradually.

I still have a small drainage tube in my lower left side that is still putting out a small amount of fluid. The doctor felt it was worth waiting on pulling it and will take it out Monday. Other than that he told me I was doing well. Still can’t drive yet and I won’t be able to lift anything bigger than 10lbs for six weeks (that’s when my breast bone should be fused back together.) The medication regime is slightly more complicated than before surgery, but I’m used to that by now and it’s really just a case of keeping yourself organized (and having a wife who’s real good at reminding you.)

Be Well.
Chris

The Verdict is In

Well the decision has been made. On Monday morning at 5:30am I will be reporting back to the hospital for surgery. At around 7:30 that same morning they'll crack my chest and perform a triple coronary bypass surgery. If all goes well, the surgery should take about 5 hours after which I'll spend a day or two in the ICU. Then a week or so in the hospital and at least a week of no activity at home.

I don't mind telling you that I am a little more than just apprehensive about this surgery. I'm not that old but I'm also not in the best of health. The thought of them opening up my chest bothers me more than the actual heart surgery. It will undoubtedly be a couple of very painful weeks and up to two months of limited activity. Of course the alternative isn't really an option - if we do nothing, I run the risk of a massive heart attack and putting in stints would very likely neither completely solve the blockages nor last for very long before closing up. So surgery it is.

I hope you'll understand, but I'll be out of touch for a while. I'll get an update here as soon as I'm able - hopefully by the end of next week or so.

Be well.
Chris

Good Morning

Yesterday was an interesting day to say the least. It started with a very long wait for my MRI. Mel left work early and came here to spend the day - we watched a lot of mundane television.

Before my MRI I got a visit from the Cardiac Surgeon - a man who is no doubt very good at what he does but has very poor bedside manner. He informed us that surgery was not an option because the condition of my liver was so bad. Up to now the story from both my liver doc and the cardiologists has been that the heart was causing the liver problems and that fixing it (heart) might very well solve a multitude of other symptoms. This was the first that we had heard someone say that the other symptoms would prevent fixing the heart. Now, to be fair, the surgeon (a man who's name escapes me early this morning) didn't say there was nothing to be done, just that he wouldn't preform any by-passes. The surgeons conversation with me lasted all of five minutes and left us both a bit stunned.

Later in the day, I gritted my teeth through a lengthy cardiac MRI without any sedation or anxiety medication - something that is not easy for me, being as clostrophobic as I am. Afterward, we received a visit from Dr. Ruben, my hepitologist (liver doctor.) He was in a bit of a tizzy over what the surgeon had said as he did not believe the surgeon had an accurate understanding of exactly what was going on in my liver and he (Dr. Ruben) felt that by-pass was not only a viable option, but might be the best course of action available. Dr. Ruben spoke with the surgeon (at some undisclosed location) and we were treated to a second, much less declarative visit from the surgeon. He said that in light of new information from Dr. Ruben, he was willing to consider the idea of bypass surgery once again. Just FYI - we're looking at triple bypass in my case - I've got three coronary arteries that are significantly blocked.

As of yesterday afternoon, the plan was for all the doctors to get together this morning and discuss the situation and then come to me with a united front of ideas. We'll see - I'm not holding my breath at this point.

As for today, I have yet to be told whether or not they'll let me eat today (after two days of one meal days, I'm still quite peckish.) The plan is to go in and place the stints today if that's what the we all agree is the best course of action. But of course that means I'll be NPO once again. If we opt for surgery or some other course of action, then it may be fine for me to eat - but that decision will likely not get made until well after breakfast time.

Well, that's about it for now. I hope everyone's day is better than mine.

Be well.
Chris

Greetings from Room 3035

So here I sit in a hospital bed once again. Yesterday's cardiac cath went well, but the docs found some major constrictions in my cardiac arteries (those supplying blood to the heart itself,) and they decided it would be prudent to admit me and run some further tests. I'm presently waiting on a Cardiac MRI to be do sometime this morning or early afternoon. The aim of this is to determine whether there is additional damage to the heart valves and to try and get a clearer idea of the extent to which my constrictive paricarditis has progressed. Then I'll be meeting with the surgeons to discuss options. Right now, there are two options on the table - another cath session to include the placement of stints or cardiac by-pass surgery.

Right now I'm just sitting here bored out of my mind and hungry as hell - I'm very much looking forward to a big slice of pepperoni pizza when this is all over. The cool thing is that hospitals now come equipped with wi-fi and computers built into patient TVs. At least I can keep my sanity by staying in touch.

I hope all are well - I'll keep this updated as best I can over the coming days.

Chris

You Gotta Have Heart

Here’s some more specifics about my heart condition and where I’m headed from here. My hospital file has the official diagnosis currently as Congestive Heart Failure. At 45, I’m a bit young for such a lofty diagnosis, but then this particular classification is really just a catch-all for a lot of different issues and doesn’t adequately explain my situation. Sufficed to say, my bid for the summit of Everest is on hold for a while (heck, my bid for the second floor of the house is in question at the moment.)

To really understand my predicament, you have to go back in my history a bit to the late seventies when I underwent ten weeks of mantel radiation for my Hodgkin’s disease. Although radiation therapy had been in use in one form or another for over eighty years at the time, many of the long term effects were still not fully understood – and, to be honest with you, when you’re fighting to rid yourself of cancer, the long term effects are not foremost in you mind. As it turns out, it is not uncommon for radiation patients to later develop a number of medical problems including a hardening of both the pericardium (the sac around the heart,) and the heart muscle itself. As of right now, we know that I have a fairly significant hardening of the pericardium but the extent to which my heart itself has been effected remains to be seen.

What this means is that the heart is able to pump out, but the stiffened pericardium prevents it from adequately expanding to refill. So the blood leaves the heart under sufficient pressure, but the restriction to its expanding means there is a back pressure building on the return side. At the capillary level, the red blood cells are being pushed into the tissues of my organs, but meeting with a backlog of unoxiginated cells waiting for the “pull” of the expanding heart to haul them back to the heart and ultimately the lungs. The tissues don’t get the oxygen they need and begin to degrade. Unchecked and this would no doubt ultimately lead to major organ failure – though I’m a ways from that at the moment. In fact, other than my liver, my other organs seem to be working fine – including my questionable kidneys (knock on wood.)

So the question now is what can be done. Next Tuesday, I’m scheduled for right and left heart catheterizations. They’ll go into the heart with sensors (via the neck for the right side and via the groin for the left side,) and take pressure readings as well as inject dye and watch it on the monitors. This will help determine exactly what’s going on and where the problems are. If it turns out that the pericardium is the primary culprit, then the simplest solution would be to simply cut a slit in the sac and let it open up a bit – thereby allowing the heart to expand normally. As I understand it, it is also possible for them to remove the pericardium completely – though I’m not clear on the particulars as to how and why this procedure would be undertaken. For now, I’m just happy to have a diagnosis that fits all the symptoms and doesn’t involve a return of either of my previous cancers. As soon as I know more, it will be posted here.

Be well.

Chris

Overdue Update

Hey All….

It’s been a long time – far too long.

The following is an update on my current medical situation for those who might be interested. If you’d like to find more timely updates on what I’m doing, feel free to look me up on Facebook under Christopher Hofmann – you’ll find Mel and Zoe there as well (Noah is not old enough yet.)

OK, to truly understand the medical situation as it stands today, you need a little history. Some of you know this story and some do not. Most of you know a little. I won’t bore you with a lot of detail – here are the highlights.

In the fall of 1978 at the age of 14 I was rushed to Children’s Hospital in Boston. A large mass had appeared on an x-ray and my family doctor had no explanation. Up until then I had been a fairly healthy kid – though, now that I look back on it, I can tell you that ADD and anxiety were a very large part of my early years but no one (especially me) had any idea what that meant. I hated school so much that I’d make myself psychosomatically ill in order to avoid the torture that started with getting on the bus. Anyway, back to 1979. I ended up being diagnosed with a rare form of Hodgkin’s disease. It had progressed quite far and I had a large tumor growing around my windpipe and blocking all blood flow out of my head (I had swollen up so much it was hard to open my eyes.) Children’s ran me through some radiation and three surgeries in three weeks and then set me on a course of ten weeks of radiation therapy. At the end of ten weeks, I was declared in full remission and haven’t had issue with Hodgkin’s to date (some 30 plus years later.)

In the fall of 1986 I started to jaundice and ended up contacting my oncologist who had by now moved to Boston’s Floating Hospital for Children, a part of Tuft’s New England Medical Center. He ran me though an ultrasound that revealed a blockage in my primary biliary duct. Ultimately, I was diagnosed with a Klatskin Tumor – a fibroid tumor likely caused by the radiation of eight years prior. I waited until the evening of January 24th for a liver transplant. I cam out of surgery on the 25th – Super Bowl Sunday (the Giants won over the Broncos.) Despite a few minor setbacks, I’ve had a relatively healthy liver for the last 22 years.

In the fall of…..I’m sensing a trend here – no wonder I hate autumn. Anyway, at the end of summer in 2005 when I was scheduled to finally leave Massachusetts and join my family in South Carolina, I took ill and was once again admitted to Tuft’s with some inexplicable symptoms. After a three week delay, Mel and I finally left Boston. I had been diagnosed with Type I Membranoproliferative glomerulonephritis. Essentially this is acute kidney failure. There had also been a tentative diagnosis of Constrictive Pericarditis (or maybe Restrictive Cardiomyopathy – they weren’t quite sure which.) When I finially got settled in SC, I got started seeing a series of specialists at the Medical University of South Carolina. We mostly concentrated on getting my kidney function back to normal which has been the case for the last 18 month or so. The heart issue was really just a nuisance and we decided not to deal with it until the symptoms became impactful on my daily life.

And that brings up to date (thankfully it’s not the fall!)

So…around the first of the year I began feeling cruddy and have some of the same symptoms that I experienced prior to my transplant. My liver doctor and I were both in agreement that there was most likely once again a blockage in my liver. Over the last a few months I’ve undergone a number of tests (including blood work, x-rays, MRI, CT scan, PTC, and a biopsy.) All of these have basically yielded no information – there is no blockage; no apparent return of either my Hodgkin’s or Klatskin tumors; no viral or bacterial infections, and no acute rejection of my transplant. In the mean time, my heart function has progressively diminished. I have almost no energy and become quite light headed with even light exertion. Today I saw the Cardiologist. He believes that my liver problems and heart problems are most likely caused by a back pressure issue stemming from my diminished heart function. In his opinion, there is too much pressure on the venous side of the circulatory system and that is keeping blood flow from properly oxygenating my organs (specifically my liver.) In two weeks I’ll undergo a right and left heart catheterization. This should yield some more definitive information about exactly what’s happening inside my heart and arteries.

So that brings us up to date. Though I don’t cherish the idea of heart surgery, I’m glad to at least have a more concrete answer. And anything is better than having to deal with another unpredictable cancer again. Keep your fingers crossed. I’ll let you know how it turns out.

Be well.

Chris

Health Update

For those of you who are new to the Southern Transplant experience, heath updates are a regular occurrence here. I'm a 43 year old two time cancer survivor. As a teen, I was diagnosed with Hodgkins Disease which was treated with mantle radiation. In my early 20s, a Klatskin Tumor of the Primary Biliary Duct resulted in a Liver Transplant. Now, 20 years later, I've been diagnosed with calcification of the pericardium resulting in Constrictive Paricarditus and I'm being treated for Type I idiopathic Membranoproliferative Glomerulonephritis (don't worry, I have a hard time pronouncing it as well - just say MPGN.) All in all, it's been a long strange trip!

Last Monday, I had an appointment with Dr. Budisavljevic (again, don’t worry about the pronunciation – we all call him Dr. Milos.) He’s my renal (kidney) doctor – a very interesting guy from Sarajevo. I see him about once every three months or so. This time around, things seem to be doing well. My labs were good. I’ve got about 50% functionality in my kidneys which, according to Dr. Milos, is great. He said he’d rather see me have 50% functionality consistently for the next 40 years than to be at 100% with an unknown prognosis. Fourty years? Who’s he kidding? The likelihood of me seeing 83 is very slim. If I can get through all this health crap and see 70 I’ll be happy. Besides, he said he’d be long retired by then anyway. Some other recent developments with me include a small blip with my liver medications. I’ve recently started taking a medication for my gout (oh, did I fail to mention that as one of the side effects of renal problems?) The stuff is great! And it helps a lot with the constant pain I was having in my feet and hands. Anyway, the new medication wreaks havoc with the immunosuppressant meds that I’ve been taking since the transplant – it makes them hang in my system far longer than without the medication. We’ve dropped my levels, but now my liver functions are off. Anyway, it takes a little finagling until we get it all straightened out. My heart is still plugging along – though it constantly reminds that it’s still there and still working overtime. I only really have an issue when I have to exert myself quickly – as I told my doctor, “I can run a marathon, but I can’t sprint.” I can keep up heavy activity for extended time as long as I can pace myself. Both the renal and cardiac docs have mentioned the possibility of transplantation in the future – hopefully I can avoid that. Not sure if I’ve got it in me to go through that ordeal again.

Mel is again doing her Weight Watchers routine and doing very well with it. The doctors told her she might be looking at a liver transplant if she didn’t drop some weight. I think that was a bit of a scare tactic on their part, but it worked and we’re both eating healthier and getting some more exercise – though she’s much better at staying consistent with it than I am. In March she’ll be going in for some surgery – nothing too serious but she’ll be in overnight.

Both Noah and Zoë are healthy though they are not gaining much weight which is a concern for the doctors. They are both taking medications that curb their appetites. Neither of them is very big to begin with and this only compounds the problem. We’re trying all sorts of tricks to get them to eat more. It’s more than just a little ironic that while Mel is trying to eat smaller healthier meals, we’re trying to pump all the calories we can into the kids. Motivating Zoë to eat is still eluding us, but Noah has decided he likes to eat what he calls pizza burgers. He likes the big frozen burgers grilled and served with a slice of cheese and four pieces of pepperoni on each side. It’s hardening of the arteries on a plate but he devours them. How he manages to eat those and continue to hold or loose weight is the source of much frustration for us (especially when Mel’s trying so valiantly to loose weight.)

Anyway, that’s all for now. Hope this finds you all well.

Oh, and we're not even going to talk about the game.