Still Sore

Hey there…I’m feeling kinda drained this AM; the drive from Baltimore really took a lot of me.  My stomach is particularly sore, but that may a combination of the trip up here; sleeping (for the first time) on a flat bed; and eating too much yesterday (I ate too quickly and spent the rest of the evening feeling bloated).  I need to remember to graze better (I guess it was easier to do this in the hospital when the food was — um — less than desirable in many instances).

I am hoping that taking it easy and maybe going for a short walk will help.  Thank you for all the calls and well wishes.  I’ll try to write more later.

me

At Home with Mom

Well, today I was sprung.  After a night of relative ease, the doctors and I decided I was okay to leave the hospital and stay with my Mom up in NJ.  My discharge from Marburg was interesting, as two family members of one of the other patients stopped by to congratulate my discharge.  I had seen these women in the halls, but we had never really talked.  The sense I got was that others on the floor were told of my rapid recovery and I had something of a ‘rock star’ as far as Whipple recovery goes!

One last procedure I had to have done today was to have the 2nd of my two drains removed.  Now, these drains are essentially tubes that are stuck in my body (presumably in important places) to suck out any aberrant fluids floating around in my abdomen.  For example, they may have placed a drain at the (new) junction of where my stomach is now attached to the intestine.  If the drains continually fill up, that would be an indication that something was right inside.  Well, the drain had been dry and today they pulled it out.

Pulling my foley catheter was uncomfortable;  pulling my breathing tube was challenging (it made me want to cough and it hurts to cough); pulling my nasogastric tube was nasty, but not terribly difficult; pulling the first drain was not something I’d like to relive, but HOLY MACKEREL pulling my 2nd drain was painful.  To add insult to injury, the doctor used a minimal amount of gauze and tape to cover up the now empty drain hole, so I “leaked.”

Thanks to my Dad and company for the Marburg robe.  I had asked the nurse what would happen if it accidentally fell into my suitcase, and the nurse suggested that we might get charged.  I didn’t think it was worth the extra cost, but my Dad, Arlene, Barbie, and Harvey I guess went in together and bought me one.  A souvenir to remember my time at Hopkins…well, in addition to the really big ass scar I have on my tummy.

MaryBeth and I are now in NJ staying at the palatial Sydney Hamburger estates.  Remember how I said that walking up and down stairs was unexpectedly difficult and tiring.  It has nothing on riding in a car for 2 hours after a 5-day recovery from an 8-hour surgery.  I’m pooped.  Thank goodness I have good drugs that allow me to hold the pain at bay.  Rest assured, though, that the next couple of weeks will be spent hanging out, enjoying premium cable TV, and relaxing.  I’m not allowed to lift anything heavier than 10 lbs and both my Mom and MaryBeth are rabid about enforcing that limit.

Look forward to hearing from y’all and getting back to Atlanta in 2 weeks.

Merle

Late Tuesday Update

Okay, so who says I’m hooked on blogging? Just ’cause this is my 3rd post of the day? Does that mean I’m hooked? I think not! Instead, I’m only interested in keeping you, my loyal friends, family, and fans apprised of my situation.

So the meeting with oncologists today: The radiation oncologists basically said that since I had the neo-adjuvant (pre-surgery) radiation and chemo therapy, I am not really a candidate for further radiation treatments. This is consistent with what Dr. Kauh had told me back in May (that once I had the IMRT, I would not be a candidate for additional radiation); however, Dr. Landry (the radiologist) did say that under special circumstances, I may still be able to get additional radiation.

The medical oncologists essentially said that my treatment with post-surgical chemo therapy was going to happen regardless of the pathology results. The fact that I had positive margins on the mesenteric arteries and 2 (of 32 harvested lymph nodes) showed signed of cancer cell merely emphasizes the importance of doing the follow-up chemo therapy. According to the docs today, I will likely start a 4-6 month cycle of gencitabine (Gemzar) upon my return to Atlanta. The specifics of the protocol, however, will be depended on what Dr. Kauh says back home.

Today I was really uncomfortable through much of the morning. While on my morning walk, I also walked up and down 6 flights of stairs (it seemed like a good idea at the time). I immediately came home and got into bed and slept for a while. I really did not expect walking up and down stairs (slowly and deliberately) would wear me out as quickly as it did, but…. Dr. Winter (Dr. Cameron’s chief resident) told me that perhaps I had overdone it and I should take it easy for the rest of the day. As I said, I was really wiped today and I spoke with Dr. Winter about the possibility of staying one more day. I like that he is willing to discuss how I’m feeling in the morning before making a decision whether to discharge me or not.

As Sam pointed out in the comments, I have stopped shaving my head during my recovery, and currently have a head full of dark fuzziness on my head.  I just decided I needed to focus my energies to be used elsewhere.  Thus, for the time being, I will no longer be the bald wonder.

Today was busy…I’m trying to relax this evening so I am fit to leave tomorrow. Thank you for continuing your support over the past week and in the weeks to come.

Merle

Interim Mailing Address

Hey there.  Several folks have asked an address to which to send cards.  You’re voices have been heard…for the next couple of weeks (until the end of August), you may send notes, cards, small (incredibly expensive) gifts to:

Merle Hamburger; 137 Scrapetown Rd., Pemberton, NJ 08068

Thank you in advance!

BTW, I was asked in a comment if I had any celebrity sightings.  Yesterday for about 4 hours, there were a series of security personnel standing in the hallway oustide one of the rooms down the hall from mine.  The security personnel included a uniformed officer (with side arm), several people who MaryBeth and my Mom described as ‘secret service’ types, and a very dour looking woman (who I thought was going to pounce on me if I looked the wrong way at the door she was ‘guarding’).  We never did see who was actually IN the room.  That’s the extent of the excitement on my end.

Pain today is a little more than yesterday, perhaps it’s just stress associated with getting discharged.  We shall see.

More updates as they become available.

Early Tuesday Update

I just met with Dr. Winter who has cleared me to be released tomorrow and to stay with my Mother in NJ.  That makes life a lot easier (I was not relishing the idea of staying in a hotel for 2 weeks).  The other news was that the surgeon’s extracted 32 lymph nodes of which only 2 were infected.  I’ll get a better sense of what that means when I talk to the oncologists this afternoon, but 2 out of 32 doesn’t sound as bad as 2 out of 8 or some smaller number.

Life moves on.  As Dr. Pausch has said, we cannot change the cards we are dealt, just how we play the hand.  Today, right now, I am all in!  :-)

More later!

Merle

Monday Updates

Merle's room

First, I wanted to give you some more photographic info about my room.  This first pic is taken on the balcony that is outside my room window (notice that my window is circled in light blue).  The Marburg pavillion buidling is surrounded by other Hopkins buildings.

Then, looking out from my room, you can see the dome of the original entrance to John’s Hopkins Hospital.

Outside Merle's Window

I spent much of today attached to my IV machine.  I had been loosing lots of fluids (the activity of my bladder is NOT in question), and the doctors prescribed electrolytes.  I drank a NASTY potassium “drink” (though, using the term ‘drink’ to describe this concoction is an affront to drinks around the world — not quite as bad as phosphosoda, but pretty darn close).  I was able, however, to barter an extra italian ice from my nurse as a reward for choking down the potassium.

In addition to potassium, the docs had ordered IV magnesium.  Unfortunately, magnesium has to be infused SLOWLY…They only had 100 CCs, but it had to be infused over a 4 hour period.  Once that was done, they had to infuse my eurthromycin (an antibiotic that helps promote bowel motility). After all was said and done, I spent the late morning and most of the afternoon on the machine.  I still strolled the halls of Johns Hopkins Hospital, but I was not a free to go as many places as I was when I didn’t have my IV machine with me.

We got some unwanted news late this afternoon, though.  Dr. Cameron’s chief resident (Dr. Winter) told me that the pathology reports were back: there were positive margins (extra cancer cells) left on the mesenteric arteries (we knew about this) and 2 lymph nodes that were infected (we didn’t know about this).  Dr. Winter has arranged for a medical oncologist and a radiation oncologist to come by for a consult tomorrow.  I will not begin any therapy while in Baltimore, but it’ll be good to get their read on the implications of these pathological results.

Not unsurprisingly, my appetite seems to have faltered some.  Perhaps this information is not as bad as it feels, but…

On the good side, Dr. Winter says he’s likely to discharge me on Wednesday.  Way back when, I claimed how in awe of my father I was that he was discharged from the hospital 6 days after his major lung surgery.  I said then that I hope I could live up to the example he set and, short of something untoward happening over the next couple of days, it looks like I’ll be following in his footsteps!

We’ll know more tomorrow after talking to the other docs.

Keep the positive thoughts / energy headed our way!

Merle

About Marburg Pavillion

First off, I’m doing well. The parts of my bodily functions that are supposed to be moving, are, and those that are not, aren’t. I’m able to go for longer and longer walks today than I was yesterday and I am completely separated from my IV (except for some antibiotics they give me once every 4 or so hours). I was taking off the pain pump (which had a button I could push every 6 minutes to administer pain medication) today as well. Unfortunately, the doctors did not update my files to include oral pain meds until this afternoon, so there was a period of time that got pretty uncomfortable for me. Luckily, my nurse was able to override the system and get me some meds around noon. The other big news is that I am solid food diet again. I’m taking it easy, nibbling here and there, but the food is surprisingly good.

Merle's Room

I have mentioned how nice the rooms here are, so I thought I’d show you what they look like.  My clothes are stored in the wardrobe on to the left of the picture.  The TV in the top of the wardrobe is very nice and has a built in DVD player.  I have a fax machine in my room, along with a workstation (and high speed wired connection, in case I didn’t have wireless).  Here you see me lounging about with a Freshen milkshake (of sorts), the bounty from one of my strolls down to the main floor of John’s Hopkins Hospital.

Here is some of the propoganda from one of the brochures about the Marburg Pavilion:

  • Quiet, secluded unit with fine wood furnishings and private baths
  • Special enhanced dining service, with expadned menus and reserved delivery times (there are actually 2 or 3 people who bring the meals to this floor.  They are in uniform and seem much more like waiters than harried hospital kitchen staff.  Did I mention that at around 4p, they bring around a tea time snack of sandwiches, cookies, and assorted drinks?)
  • In-room computer hookups and fax machines
  • TVs with DVDs and premium cable channels
  • Family and visitor meeting and lounge area with complimentary beverage service and newspapers (area also has a complimentary computer and printer)

All in all, the overall feel of this place is very nice. I guess, in addition to having the surgical skills to best handle my case, Dr. Cameron’s position at Hopkins does afford his patients some extra perks.

Now for the slightly gruesome.  If you are so inclined, you can click this LINK to see an image of my incision.  (I figured I’d give you all the opportunity to decide whether you wanted to view it or not.)  All of my nurses and the docs have said I’m healing well, so that’s good news, so while the image looks yucky, I’m told that it is healing nicely.

I wish I had more definitive information to give you all, besides that I seem to be recovering quite well.  As I’ll be in the Baltimore area until September 2nd, please drop by and say ‘hi’.  I have very much enjoyed the visits from friends and family thus far.

Regards,

Merle

Saturday Updates (updated)

Well, say what you will about Dr. Cameron, but he was up and doing rounds this morning at 4a. He told me today that he was going out of town today (I knew that), but that he was going to keep me in the hospital for another 7-8 days and then wants me to stay in Baltimore so he can see me before I travel back to Atlanta. Thus, I am presuming we will be in Baltimore at least until September 2nd, but it will all be determined by when I can get an appointment to see Dr. Cameron.

The rest of today has been spent walking about the recovery floor (apparently 19 laps = a mile, and I’m sure I walked at least a mile, if not more).  Walking helps keep my lungs clear and is the beginning of re-conditioning my abdomen muscles.  As one woman told me today, I may be one of a few men who now knows what women went through when they had old style C-sections (currently, most C-sections are done by making a horizontal, rather than vertical incision — mine is a vertical incision).

My nurses are now excited about my various bodily functions (e.g., urinating and passing gas).  I am happy to report that I have been successful on the former, but am still having some challenges with the latter (though, apparently, I’m making all kinds of bowel sounds recently, my nurses are hopeful that I’ll be able to — um — pass this challenge, too.

Interestingly, Nicky, my current nurse said she would be surprised if I stay in the hospital for another 7-8 days (I’m doing so well).  I guess all that means is that I’ll hang out at the townhouse, rather than the hospital, while I wait for Dr. Cameron’s return.  We shall see how things go.

Right now, my father’s side of the family are down at Wildwood Crest, NJ digging into a bushel and a half of crabs and several dozen shrimp.  Despite my cousin’s positive predictions to the contrary, MB and I will NOT be able to join them for this yearly feast of crustacean!  (Thank goodness I had my own crustacean feast in Atlanta).  Not to mention that I am still on an all clear liquid diet; that’s right, they can feast on crabs and shrimp — I’m sure they are jealous of my chicken broth and jello and tea and apple juice.  Hehehe!

Merle

Hello from the Riz Carlton of Recovery Rooms (address included)…

Hey Folks,

I’m out of the ICU and am now in a very nice (fancy schmancy, even) recovery room. Just as an indication, once I was settled, someone from the hospital staff came into my room, announced he was from room service and wanted to know what I wanted for dinner. Unfortunately, I’m restricted to chips and sips (that would be chips of ice and sips of water, though Dr. Cameron said he may start me on fruit juice tomorrow).

I am pleased to announce that all of the various tubes are out of me except for one IV and my foley catheter (and the Foley is coming out tomorrow). The nurses have gotten me out of bed twice for walks around the ICU ward and I am going to do one more time around the recovery ward on which I am staying. Let me say that I am just impressed to the point of awe with the nursing and support staff at John’s Hopkins. I understand that nurses all over are dedicated compassionate people, but the ones I have dealt with here at Hopkins have overshadowed all other experiences I have had.

As for how I am doing, I’m REALLY sort, but it’s manageable with the pain medication phentenol (better living through modern chemistry). I have a huge scar running from just below my breast bone to just over my belly button. My sister in law said in a comment that she was looking forward to comparing scars….I’m sorry Cat, but I got you beat! :-)

MaryBeth said that several people had requested an address where I’ll be staying for the next week or so. If you were thinking of sending flowers, I would rather you make a donation in my name to any number of organziations (e.g., The Pancreas Action Network; the Northeast Georgia Council of the Boy Scouts of America; the endowment fund of the Unitarian Universalist Congregation of Gwinnett; or a charity of your choice). Flowers are lovely, but I would rather that money be spent on something that will last more than a couple of days.

That having been said, I would LOVE to receive cards and notes, so please do not hesitate sending those if you are so inclined. My address is:

Merle Hamburger, Marburg Pavilion, RM 319, 600 N. Wolfe St., Baltimore, MD 21287

Again, I am humbled by all the well wishes that I have gotten through the blog as well as via Email and phone calls. Thank you all for caring and reaching out to me this week.

Merle

Hello from ICU

i am alive and well, if not just a bit sore   My day started off well as the nursing staff removed my breathing tube (thank goodness  — my those things are uncomfortable).  since then, various other tubes and lines have removed and i am looking less and less like a Borg  drone.

Not unsurprisingly, my belly hurts quite a bit; but only when I take deep breathes, or switch positions in my chair.  The big excitement today was that Gina, my nurse, had me stand up (OUCH) and walk around the floor.  All things considered, the hardest part of the exercise was the standing and sitting; par…once I was up, the walking was a piece of cake.

I’ll write more later, but i wanted to let you all know how much your support and caring means to me.  Thank you, one and all!

Merle