The on-going, first-hand tale of a journey through medical oncology... and what happens after.

Thursday, June 30, 2011


One of the beautiful frustrations of communicating in English is the way that words can have so many contextual meanings. Take dream for example. It is both a noun and a verb, and it reflects both conscious and subconscious thoughts. We can dream of a fairer future, where justice is both understood and predictable. Or we can dream in our sleep, sorting through the confusion of thoughts, impulses, and observations captured each day and over a lifetime.

So dreams look both to the future and to the past, dreams are both fantastical and mundane, dreams try to make sense of what we are/were/hope to be.

I have been having an interesting couple of weeks in the dreaming department. While we all know that someday our tenure here on Earth will end, there is nothing quite like a recurrence of cancer to focus your attention on the importance of family and friends and the impermanence of stuff. My thoughts have alternated between frantically thinking about the future (you know, retirement savings versus college savings versus mortgage payoff, vacation memories and travel plans that *must* occur, bicycle events that I want to do...) and living in the present. Internal decisions about how I will live over the coming few years - alternative diets, vitamin supplements, exercise regimens, work (and the number of hours to work) - all jumble around in my head.

Then there is that other kind of dream - the ones that arrive unbidden in the night as you try to restore your energy for the coming day... These last few weeks have found me recalling strange dreams - walking through a giant metropolitan marketspace (some kind of retro European space, with basement bars, brick buildings, tons of people, and rich smells) with an assortment of friends, all dressed to attend a wedding and arguing about relationships along the way - or an entire night spent trying to figure out why my clipper sailing ship needed to be filled with balsam logs as ballast rather than granite or iron (as if I have any idea about that topic at all!) I am certain that there is a reasonable pharmaceutical explanation for these dreams, and the fact that I am remembering them in detail, but I do not know what that explanation might be. My brain is knitting together pieces of thoughts and coming up with a story. What a wild tale this must be!

"When I want you, in my arms, when I want you, and all your charms, whenever I want you all I have to do is dream." - Everly Brothers

Tuesday, June 28, 2011

Peace and quiet

Dear readers - apparently silence can be rather upsetting and anxiety-building for some people. I am fine, and still marching steadily along the road of physical recovery from surgical intervention number two. My incision is healing nicely, though I am in a constant state of itchiness. This, I am told, is a good thing (but the definition of good has been called into question). I am trying to get back into the work routine, and have been granted permission to work up to 20 hours a week. Still no lifting anything greater than 10 lbs... And sleeping on one's side is not yet an option.

But, I am officially back in the saddle as of this morning... 15 minutes at a modest 70rpm on my stationary bicycle setup. I am thinking that three times a week, gradually increasing my time to an hour, is the recipe for this summer' s cycle training. May be able to do a real road ride in September... I am also allowed to start my exercise class again tomorrow - but no lifting, no abdominal strain, and no twisting. I guess this means leg work (squats and stair climbing), balance, and stretching. But it will help with the creation of new muscle mass, which is the main point of my surgeon's order to eat five meals a day (which is harder to do than it may sound).

All else is good. Next surgical consult is Friday, July 1... more blogging after that.

Saturday, June 18, 2011

Hot air

So, another five days have elapsed in my journey toward, well, the next place. I continue to recover, and think that I have found the proper combination of medications that will allow me to sleep. Aspirin is my shoulder-pain alleviator, and I am now going to restart the wean-Ed-off-oxycodone process. The abdominal pain has remained steady (and modest) since just after the surgery, and I am sure that the narcotic nightmares will go away once the narcotics do...

But what does any of THAT have to do with hot air, Ed? Excellent question. Almost wish I'd asked it myself. Yesterday, I received a phone call at about 7:30am from a friend that I was planning to see later in the afternoon. I almost did not take the call, as I was actually still in bed and sleepy, but thought that maybe something had come up and he needed to cancel. No big deal. He said hello, and then there was this awful loud static. I wondered where he was, and soon found out that not only was he in a hot air balloon (the loud sound was the gas burner firing to provide some immediate lift), he was landing in Bush Park right outside my bedroom window. Literally. They were about 100 feet from our front door, landing themselves on the park lawn. The sun was bright, the day beckoning... so I went downstairs, got a cup of tea, and watched. Very impressive.

And, as usual, that prompted me to do some thinking. Hot air balloons are relatively simple aircraft. Pump heated air into an enclosed space, and it will lift. Attach a passenger bucket, and you have a transportation system. But the steering can be complicated, and landings are not always smooth and their location can be unpredictable. Winds shift the flight path here and there, and the cooling of the air in the balloon can leave you in an awkward position if you are not paying attention. That may be the reason that balloonists are not as ubiquitous as, say, car drivers. You need to know when to add more hot air, and how much, in order to maintain a steady and enjoyable flight. And you need a team supporting the landing, to protect passengers and balloon alike.

On a regular basis, we all launch metaphorical balloons - perhaps hoping for a change to our daily circumstances. We wonder how much energy (hot air!) to inject, and how to sustain the effort. Sometimes the effort to insert additional hot air is loud, and drowns out all other sounds... We look around for the support we need to make changes (sometimes the support comes from unexpected places). We look around at our environments, our landscape, from a different perspective, and sometimes see what we can (or cannot) do differently. It is good to have trial balloons in our hip-pocket, so that we do not get stuck in place.

We just need to remember that they are there, and to not float too many at one time...


Monday, June 13, 2011

Upbeat meeting with surgeon today...

Well, things appear to be progressing well. Dr. Billingsley thinks that my incision is healing nicely. He shared with us the OHSU pathology and CT scan reports (I generally need as much information as possible, in case folks don't know or remember that about me from the 2007 cancer adventure), and that clarified many things for me. His only concern, shared by Karen and me, is my weight. For the first time in over 30 years, I weighed in at something less than 160 lbs (158.4 lbs, with clothing on but no shoes, sweatshirt, or pocket paraphernalia). His prescription for me for the next two weeks? Wean myself off the prescription oxycodone (transitioning to tylenol/acetaminophen or aspirin) and eat at least five times a day. He focused a lot of attention on the eating. Thank goodness I managed to build muscle-mass prior to surgery through the RISE fitness program at Salem Hospital!

So, some additional details for my super-curious friends and family...

(1) A normal human male liver weighs a little more than 3 lbs. Based on the pathology report, nearly a pound of my liver was provided for pathological analysis. That means I "lost" about a third of my functional liver during the resection. The exciting news is that about 90% of that resected liver volume will regenerate in four weeks. No wonder I have been so tired!

(2) The "clear margin" around the tumor from my left lobe was 0.6 centimeters, and from the right lobe was 0.1 cm. On the right lobe, the surgeon then resected an additional 0.4 centimeters of liver mass, and that "re-excision" was completely cancer-free. Good news there!

(3) The OHSU CT scan was generally unremarkable or consisted of confirming stuff we already knew (e.g., I have a port installed in my chest with a tube that runs to my heart, and I have some "subclinical foci" in my kidney (probably related to recent kidney stone)). It is great to be unremarkable!

Dr. Billingsley was concerned that I not start the remaining chemotherapy until I have had enough time to recover physically from the surgery. It sounded like maybe the second week in July (?), and he was glad to hear that I have an appointment scheduled with my medical oncologist (Dr. Tiffany) next Monday. We will be discussing chemotherapy with her, too.

Until then it's "Eat Santa, eat! The children expect a fat Santa!" (from Rudolph the Red-Nosed Reindeer)

Sunday, June 12, 2011

Abdominal stuff...

So, this second time through for abdominal surgery is proving to be no more fun than the first time in 2007. Between the physical recovery aches and pains (I have no idea how many stitches are holding my liver, abdominal muscles, and skin together, but the process of knitting organ membranes, muscular tissue, nerves and skin together is not pain-free), and the recovery from the drug effects (including the anesthesia and the side effects of the pain meds - mainly stomach upset and constipation), I am never really sure what signal is trying to get through. And I have not gotten back to a regular sleep pattern yet.

So I am constantly guessing about hunger, pain (to be tolerated), pain (to be alleviated with oxycodone), urges to use the bathroom, and just tiredness. I spend a lot of time either in the recliner or in my bed, propped up with pillows and drifting from awakeness to dozing. The cats have been generally fun to watch, as they tumble and scamper throughout the house.

I felt like an update was needed, though I have little to say today. Should know a bit more tomorrow, after our consultation with the OHSU surgical team.


Tuesday, June 7, 2011

Little update

Life and recovery are proceeding apace. I have my little pill matrix (what I take when), and have settled into the recliner space at the corner of the living room. We are tracking at least two medical situations still - MRSA associated with my ingrown toenails, and the surgery itself. Bactrim is controlling any infection that might come form the MRSA, and oycodone / ibuprofen are tackling the pain bits. Then there are the drugs that counter the constipatory effect of the oxycodone (senna, miralax, and milk of magnesia, in that order). So far we have only had to escalate to miralax.

My sleep at night is not good. Our beds assume that lying flat (on one's back or side) is an option, but those positions put weird stress in my incision. I am also having nasty dreams from the oxycodone (??), and that makes the nights seem to last forever. I am trying to be a good patient, but the sleep deprivation is hard. My next meeting with my surgeon is on Monday, June 13. And I have a meeting with my oncologist on June 20. I hope to have clarity of mind and spirit by then, but am not sure how that comes to anyone, much less a cancer patient.

In short, all is well enough. Will be "back-to-normal" before we know it. Amen.

Sunday, June 5, 2011

Where to start?

Let's not begin at the beginning this time. The tale is long, and the storyteller has to concentrate too hard on typing. I will start by saying that my dexterity and depth perception are definitely affected by oxycodone (or bactrim, or polyethylene glycol). So I sometimes find that I am correcting one word ten or more times! It is frustratingly clear that while I am recovering I will be car-free (too tippy to trust my driving skills) and typing-restricted (my depth perception is whacked). I get tired easily, so reading is a challenge as well. Total bummer. Guess that means mindless TV and movies (DVD and Netflix)! (Luckily for me, I have been offered the use of several DVD libraries by friends.)

Quick run-down on drugs in use today: Bactrim (trimethoprim sulfamethoxazole) - 160mg-800mg oral tablet, 1 tablet twice daily, antibiotic regimen to control MRSA (methicillin-resistant stapylococcus aureus) bacterial infection. Will be on this drug for seven days at home; OxyCodone immediate release 5mg oral tablet, 1-3 tablets every six hours as needed for pain relief; Senna-ducosate 8.6-50mg oral tablet, 1 tablet twice daily, to relieve constipation (hold for loose stools); Polyethylene Glycol (MiraLAX) 17gm/dose oral powder, once daily as needed (hold for loose stools); and, Ibuprofen - 200mg tablets, 2 tablets every six hours for pain relief, (can increase ibuprofen dose to maximum allowable 2400 mg per day as decrease dosage of oxycodone). Also still applying clindamycin 1% topical gel for acneform rash (chest, back, and thighs).

Incision is LONG, beginning at approximately middle of right waist, travelling across my abdomen (and slightly up) to just above my belly button, then straight up to end just below my sternum. It is sealed internally with soluable stitches (too many to see and count through the steri-strips) and the externally with seventeen steri-strips. Total length is about 10 inches.

More incisive dialogue to follow...

Saturday, June 4, 2011

100th post is a record for brevity...

I am discharged as of about 5:30pm today - June 4th, 2011. Relief is spreading across North America and Europe.

Longer posts will ensue, but probably not before tomorrow. And another nurse is added to the shout-out list... Carrie!

Friday, June 3, 2011

Naming names

So, how many of you got a little nervous when you read that blog title? Hmmmm.... I am sure there is another blog post or two on that topic, but we ain't goin' there today.

Nope, I mean the support staff that have been so wonderful during my visit to OHSU. Many of these people will remain unnamed (because I do not KNOW their names), but they include the custodial folks, the dining support staff, and just everyone I talked to. There is an unnamable pathologist (we do not yet have a copy of the report yet, but know the finding (as expected, metastatic adenocarcinoma) and the fact that there is a clean margin surrounding each tumor).

But I digress. The names I want to share and memorialize forever in the Web are the RNs that were so helpful, professional, and wonderful to me and my analytical habits. Can we have a "way to go" for Christy in the ICU and for Rachel, Sharka, and Stefanie in Unit 13K of the Kohler Pavilion? I was very worried about many things (pain, peeing, and passing gas to name a few - but you already knew that if you have been folowing this blog over the past couple days). They handled everything with empathy and confidence. Over the past two days at 13K, I especially felt like Rachel, Sharka, and I were a team working to clear the pain med delivery and peeing hurdles.

[More details necessary, I know. In the operating room, pain suppression and anesthesia drugs were delivered via an IV placed in my right carotid vein. This vein is used because it is big enough to handle any drug they need to use, especially those that might burn the inside of a smaller vein, and in case I needed a blood transfusion (not all that unusual for liver surgery, but I did not need one). On my right forearm, I had two additional IVs - one in an artery and one in a vein. The arterial IV was used for lab draws, and the venous IV was for pain suppression. We were removing the arterial IV in my forearm, but ran into some tape issues and had to also remove the venous IV. This was OK because I still had the one in my carotid vein. I then had another IV placed in my left arm, and we removed the carotid vein IV. Then, that one started to have issues, aand we accessed my PowerPort. Things are pretty good now, except that we seem to need to flush that line every few hours (blood draws, mainly, but also for a magnesium drip later this aftenoon. Whew!]

That's enough. Big shout-out to nurses and their assistants. Amen.

Thursday, June 2, 2011

In the category "granted, taking things for..."

I am back in the blogging saddle, as they say, and am ready to profess some profundity. Really, I'm ready. Ummmm... So where is the creative promise - that "I'm the driver here" feeling? I guess that should not be taken for granted. OK then, Ed, enough with the cutesy. Let's go.

I have been told that there are two things (at minimum) that I must be able to do before they will consider releasing me back into our urban wilderness: pass gas, and pee. These are straightforward and automatic processes, and I take them for granted. Somewhat unbelievably, I am struggling with these simple bodily functions! And, just to complicate things a little more, I am told that I must work to remain hydrated (water and Gatorade). Input is not equalling output and that creates a problem. The solution so far has been to insert a temporary catheter every six hours. The passage of gas - which many of you can attest has not been a problem in the past - is not even on the radar screen... Once we nail the bladder issue, it's on to flatulence. :-)

My strength is good, probably in no small way due to the Salem Hospital RISE fitness exercise classes with Dave and Nancy. But the hydromorphone pain killer that I can self-administer may be masking things... (Has anyone noticed that I use ellipses a lot?)

OK - I need ro make this a short posting, since I have dozed off five times already while typing with two fingers. (But not before having three vials of blood drawn for three lab tests.. Geez..)

Wednesday, June 1, 2011

Update 2

(Karen posting again)

Today Ed moved from the ICU to the surgical oncology floor where he has a very nice private room at the end of a long quiet hallway. This is a huge improvement over the ICU which was subterranean and under construction. He is still pretty doped up on dilaudid for pain and not able to chat for long or really even focus on email or facebook. I am reading your replies to him in between his catnaps. He would prefer not to receive phone calls so that he can sleep.

One unexpected development came last night when I picked up a voicemail from Ed's doctor in Salem, telling him that the cultures from his ingrown toenails (please see his May 22 entry if you missed that little distraction) tested positive for MRSA which is a pretty nasty bacterium. The short story is that they put him on antibiotics and he is in isolation until they decide he is not infectious. That sounds horrendous, but it basically means that everyone in contact with him has to wear a gown and gloves. Luckily the touch pads on the iPhone and iPad work while wearing lovely purple nitrile gloves!

We expect him to be at OHSU through the week end. He thinks he can handle a few visitors starting tomorrow for very short (15 minute) visits, but you might want to check with me first to see for sure. And he promises to be more social once he gets home. He will be very tired for a while, even once he is over the immediate post surgery issues, because his body is working really hard to regrow his liver.

Thanks again for all the love. It means so much to us and is most definitely a critical part of the healing process.