Recovery at home

I'm still tired, lazy and don't want to type much. Good thing I type quickly.

For people who aren't on facebook, here's a couple of posts I did there:

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  Long time left to recover, 3 sets of incisions /w staple marks, 2 tube marks that look like open gaping gun bullet holes, a few tiny holes from injections, IV, and arterial catheters, epidural needle nerve damage. You know, the usual. ;-)

• lol. The thing that gets me is I don't seem to be growing back any pre-chemo hair yet... just growing long hairs that survived chemo. So pretty sparse up there...

Some additional hospital humour / stories:

• "Uh, did you know you're flashing people behind you?" (Nurse to me)
• Pulling out of nose tube (slowly), "Ok, that's a weird feeling, ow ow!", nurse stops, just makes it hurt more, "don't stop! keep pulling!", finish getting out tube. "whew! That wasn't fun."
• Nose tube caused a friction burn over the 5 days with the tape holding it too my nose, and some bloody boogers. I managed to get the nurse to replace the bandage after a bath revealed that there was some boogers under it. She replaced it with a see-through one, and it revealed that my left nostral still had a huge black mark under it, so I tried to replace the bandage myself (they had left some behind, silly nurses). So, I'd seen them rip the bandage multiple times by hand, and had done it myself too, so I figured, ok, I can do this... get the bandage off my nose, but it is still wrapped around the tube... and it won't rip (too moist from washings, sweat, other?) So only thing I can find sharp in the room is a safety pin, try to rip it with the safety pin... no luck. So now I have this big bandage hanging from the tube in my nose like a large booger. Great. On top of that, since it was off, I attempted to clean it... turns out it was massive scar / scab tissue that (even of this blog) isn't going anywhere soon. So, I attached a new bandage anyway, leaving the old one dangling (I had to put on a new one, as I felt the tube going in/out on its own!) At this point I'd done enough things to embarrass or anger my nurse, that I didn't want to call her (strange, I can't remember the other things...) so I took a stroll into the quad and looked for some scissors. Found another nurse, younger, more forgiving looking, and said, "I have a little problem" as I proceeded to blow upwards with my mouth causing the band-aid to blow in the wind. She laughed and asked who my nurse was. I refused to say and convinced her to just help me out. She cut off the first dangling one and applied a newer one (replacing my makeshift job) She did a much better job than I did.
• One of my room mates and I weren't that great for sleeping. I would start coughing or clearing my throat and his drugs would interpret that in his dreams as a confirmation of some question and he'd go "a-huh, yes", each time I did something like that, then he'd go into some sort of dream sequence that always ended up with him talking about if 'what time is it", "are the girls here yet" followed by him starting to remove medical stuff and attempting to dress and leave the hospital. I didn't catch onto the cause until the 3rd time, at which point any time he started with the dream sequence questions I'd have to tell him, "go back to sleep, its just a dream, we're still at St. Joe's hospital and it is 3am (for example)". His coughs and stuff cept me up, and I kept waking up hourly because my drugs caused me to break into a deep sweat every hour and then I'd have to reposition, or change my gown/sheets  (which would wake him up). Worst nights ever!

-- Shane

Shane's HOME!!!

Shane was discharged today around 4:30 pm.  He got all of his staples and IV sites removed.  He's moving around okay, but is extremely tired now.  Currently resting in bed.  He will probably update the next blog.  So happy that he's home!

Shane's Post-op day 6

Hi ho, everybody.  This is still Kaye subbing in for Shane.  I expect that everybody's wondering how Shane is doing so far.  Thanks for all the get well soon wishes.  

From post-op day 3 to post-op day 5, Shane grew increasingly grumpy from being attached to so many tubes and drains and suction machines and the incessant beeping and whistling sounds emitting from various sources.  Oh, yeah, and the pain that he had to endure 24 hours around the clock.  I really couldn't blame him for being irritated, but by day 5 (of visiting Mr. Grumpy-pants instead of  my loving sweet hubby), I had fantasies of kicking his urinary catheter bag across the room and watching it sproing back like a bungee cord.   (Bad, Kaye, bad, bad, Kaye).

But starting yesterday, Shane had his various tubes and drains removed - very unpleasant experiences, but Shane became happier and less stressed as each one was progressively yanked out of him.  He had his nasogastric tube (that's the tube going past his nose into his stomach for drainage) removed this morning.  He wasn't allowed to eat or drink anything until after his barium swallow test (basically, an x-ray that checks for any leakage at the new joined connections of his stomach and where his old esophagus used to be).  Shane said that whatever the radiologists gave him to swallow tasted horrible.  He told them, "Man, I haven't had anything to eat or drink for 7 days and the first thing you give me is THIS YUCKY?!!"  The radiologists said that nothing leaked, so, yay, Shane can start on a clear fluid diet, then, a full fluid diet, then, a soft diet probably before he gets discharged from the hospital. 

The chest and neck tubes surprised Shane and me.  We weren't expecting the lengths that had been buried into Shane's  body.  (ew, gross!)  Shane had to have another x-ray done of his chest after the tubes were removed to make sure that nothing was out of place.  The porter, Ian, was really friendly and nice (such a sweet young man!), despite the pierced nostrils and him telling us of his bad experience with morphine when he experimented with various drugs which was how he ended up in prison.  But he's much better now.

Speaking of morphine, Shane is still hooked up to a continuous IV morphine drip and "pain pump".  He still complains of pain, but the removal of all of the tubes and drains really diminished his suffering by ALOT.  Unfortunately, he still goes "woo hoo" due to the side effects.  I felt so sorry for Jen, the dietician, because she really looked like she was lost when she tried to talk about dietary management with Shane.  Shane was rambling nonsensically on and off topic (which reminded me of "Rose Nylund" from the Golden Girls, when she would tell profoundly strange stories about her hometown).  Shane's diet management has always been a sore point in our marriage.  We unfortunately bickered in front of Jen.  She later asked us how long we have been married (11 years!), because she only got married last year.  Hope we didn't scare her.

Anyhow, Shane still looks pretty good.  All the drains and tubes are out (with the exception of his peripheral and central IV sites).  He's doing his own sponge bathing (thank goodness).  He's able to walk laps around the unit floor and can climb up the stairs.  His incisions are clean and shows no signs of infection.  The incisions are held together with staples, so he looks like Frankenstein.  His vital signs are stable.  

Shane might be discharged by tomorrow afternoon. Who knows?  I'm hoping that he won't be, because I really want to see how his new stomach and sewn up connections tolerates ingestion of food.  I guess we'll find out tomorrow. 

Shane's post-op day 2

Hi, everybody.  It's Kaye, again.  I'll be so glad when Shane can focus his eyes without blurred vision.  Then, he can take over his blog again. 

I saw Shane again on Friday afternoon at 2:15 pm. He was transferred from Step Down to the Chest unit on the same floor.  His room is 4134, bed 2.  His bed is right next to window.  It's down the hallway right next to the Step Down unit.

Shane looked exhausted today. Apparently, before he was transferred, he walked across the Step Down unit with the physiotherapist.  He said that he had to use sanchin dachi (hourglass stance from karate)  in order to keep his balance.  He leaned on his IV pole and the physiotherapist's arm as he made very slow progress.  Then he sat in his chair for 1 1/2 hours.  After all of that exercise, I guess the health care team deemed him well enough to survive and kicked him out of Step Down to free up his bed.  Do I sound bitter?  Nah.....

Anyhow, his surgeon saw him today and gave report to the gaggle of attending physicians that will take over his patient case load when he goes off on his 3 week vacation.  Unfortunately, Shane couldn't understand doctor lingo and I wasn't present to translate.  Shane did say that his epidural wasn't working so they'll just rely on his IV morphine continuous drip and "pain pump"  to control his pain.  So he still has an epidural line stuck in his back - not hooked up.  But his nurse won't be able to remove it until his blood clot time decreases.  Shane is still experiencing the after effects of all that injected heparin (blood thinner to prevent clots)  so if they take something out, he'll just keep bleeding.  Anyway, since they're now using the morphine solely for pain management, Shane was more spaced out than usual.  I offered him something to read, but Shane can't focus his vision very well right now.  So forget about giving him reading material for a while yet.

Shane still can't eat or drink, but he's allowed to have ice chips periodically to moisten his mouth and to help dilute all the mucus caused by the nasogastric tube.  That's the drainage tube that goes through his nose and into his "new" stomach.  Shane spent most of the day dozing and resting.  Not surprised, considering all of physical exercise he did in the morning.

Shane is in a semi-private room that he shares with another patient: Ed Smith.  Ed seems like a nice guy.  He has difficulty staying upright on his own and tends to flop over in uncomfortable positions in his bed.  He doesn't like bothering the nurses so he never uses his call bell.  So if you're visiting and Ed's flopping over, just press the call bell and get a nurse for him.  Nobody should be in any unnecessary discomfort in the hospital and nurses are supposed to be there to help the patients get better.

When I was visiting, Shane's day shift nurse was Ken, this big barrel of a tattooed Scottish man.  I wasn't sure who he was when he clomped through the door and started checking Shane out.  Shane said,  "And you are...??"  "I'm Ken, your nurse.  And I'll be taking care of your sponge bath."  (in a Scottish accent, I'm assuming that because I overheard him talking to Ed that he follows the soccer team in Glasgow).  Thankfully, Ken decided to delegate the sponge bathing to Rose, a student nurse.  Rose looked a bit nervous and unsure of what she was doing.  So I helped out with cleaning Shane up.  Later, Shane asked me if I cleaned him below the waist, because it didn't feel as clean as it should be.  Huh.  Well, I didn't. I guess it was Rose.

Shane's surgery and post-op status

Hi, everybody.  This is Kaye subbing in for Shane.  Shane wanted me to update the blog and to tell everyone how he's doing.   Thanks for all the best wishes, prayers and good thoughts!  Shane & I are lucky to have such a great support network.  We could feel all of the positive energy directed at us!

On the morning of the surgery, he was calm and full of the equanimity that I should have been practising.  Shane even drove to the hospital in Hamilton.  He was still feeling the "Quan"  in the pre-op room (most aptly called the "Kiss and Cry") before he was wheeled out. 

Shane's surgery started at 8 am on Wednesday and lasted about 5 hours (from 8am to 1pm).  His surgeon came out to see me after the surgery. He was pleased with how the operation went and told me Shane was waiting in the recovery room.  I wasn't able to see Shane until he was moved into the Step Down Unit around 5 pm.  He was very groggy from the after effects of the general anaesthetic.  It was difficult to carry a conversation with him, because he kept on dozing off mid-sentence.  But, his condition was stable and he was able to start doing his deep breathing and coughing exercises and his foot and leg exercises (to prevent post surgical complications).  He was in a lot of pain despite having his epidural and a morphine "pain pump". 

I went to see Shane again the next day around 11:30 am. His bed is right next to the nurses' station.  I was glad about that, because, at my first glance of all the tubes and drains attached to him, I knew that he was going to require a lot of care and monitoring for the next 48 hours.  Shane was conscious and lucid.  He was able to talk to me, but tired very easily.  His condition was stable and his skin colour was pink and warm to the touch.  He looked very good post op, considering that it was 24 hours since his surgery.  Shane still felt a lot of pain, especially on his incision in his right side.  But he was able to tolerate the pain due to his epidural and use of his pain pump.  His nurse said that he won't have any increase of dosage for the pain meds.   Otherwise he'll become too disoriented to sit or stand and they want Shane to be as ambulatory as soon as possible.  He complained of difficulty in focusing his eyes and total disorientation re: the passing of time.  Sometimes he would feel that 5 mins felt like an half hour and vice versa.  These are probably side effects from all of the pain medication. He was able to sit in the chair for about 5 mins, while they changed his bedsheets.  Overall, I'm really happy about Shane's condition after the surgery.  My only concerns are post op infection and his kidneys.  But the nurses are pumping him full of IV antibiotics to prevent infection and IV fluids to encourage his urine output.  He has about 3 tubes draining secretions from various incisions on his body, so I'm not surprised about Shane requiring more fluid intake than usual.  He has all of the tubes that we talked about 2 blogs ago.  He has a 5-6 inch incision at the front of his abdomen.  He has another 4-5 inch incision on his upper right side.  He has another 2-3 inch incision on the left side of his neck.  Having all of those tubes and drains is kind of messy, so if you're squeamish about body secretions and fluids, it might be better to visit later. 

Shane wants me to tell everybody that he feels positive about the outcome of the surgery.   I'm just so happy to see him alive and kicking around still.

The Step Down Unit is very strict about visitors and visiting hours.  I almost got kicked out, even though I'm his wife! And they don't allow children under 12, so our kids won't be able to see Shane right now.  So apart from Shane's family, please refrain from visiting Shane until he's transferred out of Step Down and into the Chest unit.  Both units are at St. Joseph Health Care Centre, Juravinski Tower, 4th floor.  Visiting hours are from 2pm - 8pm and restricted to 1 visitor at a time (Step Down Unit);  2 visitors at a time (Chest Unit).

Again, thanks to everyone for being so supportive and helping out with child care.  Esp. thanks to Charlene for her generosity in letting me stay at her home - so I could be near Shane during his hospitalization.

MRI ... Clean. YAY!!

Nothing found on the MRI. Yay!  So proceeding with surgery for tomorrow.

I am SOOO glad that Milton pharmacies don't carry Oral Fleet. That stuff is disgusting, makes you gag as you try to down it. Pico-Salax (the doctor's alternative) tastes way better. Still strange taste / feeling, but much easier to get down I must say!

Shane

Fri / Sat - July 16 / 17th - pre-op assessment

 So Friday went well.

MRI done. It was very noisy. Kind of like a cross between a machine gun at times and a rock concert. I will be discussing the results on Tue July 20th with Dr. Miller to see if there is anything wrong with my head at all, or if maybe I'm just dehydrated because I'm not used to summer heat without an air-conditioned office to hide in all day.

Pre-op assessment, they measured my heart rate pattern, blood pressure, did a chest x-ray, took urine and blood samples and had a couple of consultations regarding what to expect pre and post surgery.

Surgery: I'll be having a three field esophagectomy.

• I'll have to wear fancy diabetic stockings to keep potential clots from my leg veins going anywhere. I'll have to wear them for 18 hrs before surgery, during and for a number of days after the surgery.
• They gave me some sort of pumice rock sponge to scrub my chest with to make sure I'm quite clean for the areas of surgery. I haven't seen it yet, so I'm guessing at its material, its in a tinfoil wrapper.
• I have to take some oral enema prescriptions to have nothing in my digestive track from around 2pm Tue until days after the surgery. Only clear fluids on Tue up to Midnight, and nothing after midnight.
• I have to arrive by 6am, surgery scheduled for 8am with an estimated surgery time of 4-5 hours. Maybe a couple more as a buffer.
• I'll be out cold for the whole surgery and will be groggy for another 8 hours after surgery.
• I won't have one of those buttons for self administering the pain drug post surgery. Instead I'll have an epidural attached to a medicine pole with a constant controlled drip of freezing for pain area.
• I'll have a catheter at my wrist into an artery (instead of a vein like many IVs) to measure blood pressure (possibly more).
• I'll have a tube through my nose into the chest cavity between my lungs and chest to remove air pockets caused by surgical exposure.
• I'll have a feeding tube into (the remains of) my stomach coming out my side to bypass the surgical area.
• I'll have 3 incisions, 1 on my side, one in my mid to lower chest and 1 on my neck.
• When I wake up, for a couple of days, I'll have to practice hourly deep breathing and coughing exercises to remove any fluid build-up in my lungs and prevent surgical pneumonia.
• I'll have an IV site set up as well for medicine injections (as needed) and for nutrition / hydration.
• A catheter for pee.
• After surgery, I'll be spending 1 day in a "step-down clinic" one bed away from intensive care. After that close monitoring, I'll be moved to the quad / semi-private / private for longer term stay.
• Because of all the tubes, incision sites, I probably won't be doing much for a couple of days (like reading) But I apparently should be able to walk around after a couple of days.
• Visitation hours are between 2pm and 6pm and are limited to 2 people visiting at a time (according to the parking garage sign.) Kaye is welcome anytime, they make allowances for spouses.

On a lighter note, I'm helping celebrate Zoe's birthday today (actual BD is on Sun, her 11th) at Laser Quest with some of her friends.

Oh, the doctor gave me a prescription for the oral enema, but it isn't stocked in Milton. So I have to wait until Monday for a replacement suggestion from the Doctor. One that hasn't been discontinued in Milton, either that, or travel to Hamilton just to fill out a prescription for Tue.

Monday's chemo doctor followup was canceled as unnecessary since surgery has already been scheduled.

Shane

Getting stronger...

FYI: I survived a full Karate class on Monday. More frequent breaks to catch my breath, but I made it through. Now its Wed. and my muscles feel alive! Ah, I missed them, its nice to be back, even if it is for only a week and a half. :)

Oh, my apologies to a certain 6' plus, 200 lb individual's jaw during jui-jitsu head-lock escapes. I guess I don't know my own weight (I have weight!? Well, I guess I did gain 4 lbs since chemo ended. lol)

-- Shane

Surgery todo list...

Ok, here's what I know.

• I've had a head-ache for 3 full days now. A doozy of a headache! The surgeon doesn't like that and is now prepping me for an MRI scan (date TBD) of my head to make sure it isn't cancer. I'm going to assume, for now, that it is some sort of chemotherapy withdrawal symptom that will pass in a day or two.
• Pre-Op assessment clinic:
• Friday July 16th @ 8:45am for 2-3 hrs
• They will be assessing my "normal" baseline and ability to go into surgery. ECG (heart scan), x-ray, blood & urine tests, etc. I guess they want to make sure I'm not on drugs or have some weird psychotic heart beat or something. Actually its to compare what is normal to what they witness during surgery to see if I'm remaining normal (for me).
• Follow-up with chemo trio-team (chemo, radiation, surgeon experts) at Juravinski cancer center on the 19th with some blood work.
• Return visit with Dr. Miller (surgeon):
• Tues July 20th @ 11:45am
• To go over the MRI results for my head (fingers crossed they find nothing) and handle any further questions about surgery or the pre-op assessment.

• Day of the knife! (Dum Dum Duuuuum! *Eerie music sounds*):
• Wed July 21st @ 8am, have to arrive around 2 hrs early, leave house 1 hr before that, and actually get up and be prepared to leave... so that makes... 4:30am! Sigh...
• 4 - 5 hour procedure (apparently), I'll be knocked out the whole time (Yay!)
• Procedure: Three Field Esophagectomy (if you want to look it up, but don't if you're squeemish).
• Some stats:
• 80% chance they can proceed once they start and see what is surrounding the esophagus.
• So that means 20% chance that something will prevent the rest of the surgery. Like they have to remove too much of the stomach and esophagus in order to have enough stomach left to reconnect. Or, cancer has spread more than scan shows, and surgery isn't advisable, or ... other complications.
• Roughly 100% of survival (if rounded) while on the table.
• However, if complications are to occur, it will likely be during recovery. So avoiding visitation for a good 3 or so days until I pass the infection complication stage is advised.
• I'm currently arranging for semi-private (instead of quad/ward or full private) room.
• FYI: they want to remove (if enough stomach to do it) my WHOLE esophagus. However, since they aren't sure how bad the cancer is in the upper stomach, they aren't sure how much they'll have to work with, so they will remove enough esophagus as they can with what stomach I have left to reattach with. This is a preventative measure, as this sort of cancer tends to creep upwards, and they don't know with certainty how far it is without microscopic biopsy. So it is safer to remove as much as possible. 
• If they can remove all of it, on the bright side, I won't really have heartburn like I used too. You see, the stomach lining doesn't get heartburn, just the esophagus, but since my esophagus will be stomach lining, it won't hurt. :-)
• Unfortunately, I won't have a valve, and may prefer to sleep sitting up slightly. That sucks.

That's all I have for now.

-- Shane

Last day of Chemo is today (Tue July 6th)...

Well, I'll be glad when the symptoms go away. Time to build up my endurance once again before the surgery.

• Tomorrow is the CT scan (Wed), 
• 7 days from now (Tue) is the surgeon follow-up which will determine a surgery date (I won't know before that). 
• Also on the 19th is a general follow-up with the chemo team that includes a blood-work examination to see how I'm recovering.

Thanks for everyone's support through this first stage of my ordeal.

Shane