Coffee and Closure

Cartoon by Alex

I want closure.  I want to bid adios amigo to Mr. Poop Bag.  Last week, I failed the third water tight test of my colon.  Bummer.  Good news is according to the radiologist and my surgeon there's less leakage visible in this latest CT.  The hole seems to be getting smaller and healing as revealed through the magic of enema and x-rays.

   

As mentioned, I will have my follow up MRI and CT scans of my pelvis first part of November.  In the meantime, lovely Alex got me a ticket to visit my great friends in the SF bay area.  Can't wait!  I leave tomorrow.  Me and Mr. Poop bag are packed and ready to eat some good tacos and drink yummy espresso.       

Photo by Anonymous Blogger 

Black Crims and fractures

Alex and I harvested our first two tomatoes, black crims, this season from our bed in the community garden.  We promptly cooked them in a marinara sauce with some of our fresh basil.

My oncologist also unearthed some new growth.  MRIs and CT scans showed insufficiency fractures (not complete breaks - obvious cause I'm still standing) in my pelvis and sacrum.  In addition to calcium and vitamin D deficiencies, one fracture may have been caused by a lesion.  The lesion visible in the MRI (soft tissue scan) could be benign or malignant.  The orthopedic surgeon does not see evidence of a bone tumor on the CT.  He prefers to wait 3 months then do follow up MRI and CT scans.  If the lesion has grown, he will do a biopsy.  Also, the pre-op radiation treatments I received last fall may have also caused my bones to weaken.

This Too Shall Pass

I was hospitalized last week for six days because of a bowel blockage.  It's like a bad case of gas times ten.  Alex pulled another stint with me all day in the ER.  Fortunately, the conservative treatment of putting me on IV fluids only for a couple of days did the trick.  Also morphine, my old friend, was helpful too.  Otherwise I would have to have undergone surgery if the blockage had not passed.  Whew!  Some of the nursing staff remembered me from January and one even asked how my mom was doing.  Thanks to their care I am back at my favorite Korean food truck Bulgogi and Kimchi!

Lightning Bug BBQ

No, we will not be grilling insects. It's a potluck BBQ to celebrate the end of my cancer treatments, my survival, and the survival of the lightning bugs, who should be in attendance.  If you'd like to attend RSVP so I know how many dogs and tofu pups to throw on the grill.
Lightning Bug BBQ Invitation 

Down to The Wire

This week, Alex and I watched the last episode of The Wire Season 5.  I also got my last chemo treatment on Friday.  Yahhhh!  Many of my California friends visited NYC this month and have been helping me celebrate.  Amber dead headed some flowers and basil in the garden a couple of weeks ago (above).  Last Saturday Alex and I hosted a BBQ for Jon and Juliet.  Their friend Emma broke a world record for getting pooped on by birds 7X and yet still had a good time.  Thursday night Matt got Alex and I hooked on yet another TV series drama, State of Play by BBC.  Anytime I have a friend in town I take them to High Line Park, one of my favorite spots in NYC (below).

It's down to the wire but there is still more to come.  In a couple of weeks I will have a series of follow up scans and tests done for my oncologist .  End of August my surgeon will run more tests in preparation to reconnect my plumbing.  Hopefully I will have the surgery to reverse my ileostomy in September/October.

Less is more

How so?  My post-operative adjuvant chemotherapy is ending a month and a half sooner than I had expected.  If all goes well I will have my last treatment on July 5th rather than the first week of September.  Hell yeah!  My own independence day :).  By the way adjuvant therapy refers to additional treatment, usually given after surgery where all detectable disease has been removed, but where there remains a statistical risk of relapse due to occult disease.  In the case of colon cancer the additional treatment is generally six months.  But because of my good path report and other factors, the six weeks of chemo I had prior to surgery will be counted towards the total adjuvant therapy.  I am getting 4 1/2 months post-op chemo.   

Also Alex and I planted seedlings of lettuce, tomato, and herbs in our new 4X8 bed at the community garden.  It may sound small but having access to any land in NYC is worth fighting for. 

No Re-Up and Spring Beds

Yes that's barbed wire running along the fence to our community garden West 104.  Welcome to New York City!
My doctor's office forgot to re-up my chemo last week.  The benefit being I had more energy to help construct new beds in our garden over the past two weekends.  From left to right of the barbed wire garden members Jean, me, Sue, and Alan.  The downside is it adds another week to my total treatment time line.  Phhtpppt!  Also last week my friend Alan coerced me, after a beer or two, into joining the garden steering committee.  So this year Alex and I will be getting our own bed for vegetables this season!  Yeah, power corrupts.

Spring and side effects

Last week, I was waiting to get my "re-up" of chemo.  When a couple of fellow cancer patients, who I met previously months ago at the infusion center congratulated me on my hair growing back so quickly.  Hey, I said.  Ladies, this IS my normal amount of hair.  My hair hasn't fallen out because of a side affect it's called natural thinning.  Speaking of new growth, the daffodils have sprung in Central Park and it's time again to begin planting in our community garden (see map).  Also, Alex and I went to the first day of the Cherry Blossom festival in Brooklyn Botanical Garden last weekend.

Apart from the usual suspects: nausea, fatigue, diarrhea, and constipation (at the same time!?) I do have an unusual side effect - mild neuropathy when exposed to the cold.  Neuropathy is a condition that causes tingling or pin prick sensation in certain areas of the body, especially the hands and feet but can also occur in the throat.  Gag!  So I needless to say I avoid ice cold drinks on my chemo days and keep an oven mitt by the fridge.

My routine is I go every other Monday morning I go to the infusion center at the hospital where I get attached to an IV pump via the port in my chest.  Then I am sitting in a big lazy boy chair for about two hours while I receive two types of chemo.  I usually doze off listening to Wait Wait Don't Tell Me on my iPod.  Later the nurse attaches a "to go" pump of chemo which I then wear home.  I return on Wednesday 48 hours later and get disconnected.  The best is that I don't have to return to the hospital for almost two weeks.  So I get one week on and one week off chemo

Get Well Card from Marty

And eat well!  Here is a shopper's guide to pesticides (PDF and iPhone app) from my oncologist's nurse.
http://www.foodnews.org/walletguide.php

Time flies: Phase Three

Can't believe it's been a month since I left the hospital.  I got my last drain removed today.  Wow now I can wear jeans again ... ahh the freedom of denim.  How I loathed those sweat pants!  I've been off the anti-biotic for over a week and there have been no signs of infection.  My appetite has returned to normal.  But it's a gradual process of building back my muscle mass.  I lost twenty pounds or more in the hospital.  Hence the high caloric diet or what I call my donut prescription.

Next week I start phase three: post-operative chemo.  I will be getting a combination of chemo drugs used to treat colon cancer called Folfox.  It consists of the drugs 5-Fluorouracil (5-FU), leucovorin (FA, LV), and oxaliplatin (Eloxatin).  I will be receiving the Folfox over 2 days every two weeks for 4-6 months.  

Getting Well

If it's good enough for Shane it's good enough for Bill.  I bet they gave him his own private room though.
Bill Clinton Has Heart Surgery At Columbia Presbyterian

Not much new to report.  I am walking everyday 15-25 mins outside.  It has increased my appetite and now I am starting to eat regular sized portions and more snacks.  I have also started working with a physical therapist on regaining my strength. 

Thanks so much for all the get well cards, posts, emails, phone calls and care packages.  Your continued concern keeps my spirits up.  As my energy returns I hope to respond more readily. 

New dietary restrictions

I know so many of you are eager to help us out with meals and care packages, so I wanted to pass on Shane's new list of dietary restrictions.  He was already lactose intolerant, so he can't eat anything with milk, including milk chocolate.  Here's the list of other restrictions from his ileostomy guidebook:

• Unpeeled Apples
• Broccoli
• Raw Cabbage  
• Cauliflower
  
• Celery
• Coleslaw
• Coconut
• Corn
• Dried fruit
• Grapes
• Mushrooms
• Nuts
• Raw Onions 
• Spicy foods
• Again, Shane doesn't eat anything with milk in it.

If you've already sent some of these things, don't worry, I don't have any dietary restrictions and I'm willing to buy bigger pants.

Starting the weekend off with help from friends and a pep talk

Our friend Marty came from California to visit this weekend, and we feel very lucky to have his company.  He brought us real tortilla chips, avocados, organic chocolate, and good coffee from California.  He also did three loads of laundry and kept us company for the better part of the day.  My classmate Nina also came over and dropped off some supplies.  In the afternoon, we went to see Shane's surgeon, who said that he is generally satisfied with Shane's progress.  He said Shane needs to eat more and suggested that a small amount of activity each day, such as a walk around the block, would help stimulate his appetite.  With more nutrition, his body would heal faster and Shane would regain some energy.  The surgeon also recommended another CAT scan on Monday to check on Shane's healing and make sure fluid isn't building up again in the area of infection.  The doctor also sensed that we are a bit weary and suggested we take the long view: even though the recovery has been difficult, this will pass and a year from now we won't even remember a time when Shane didn't have an appetite.  He said we should focus on the fact that Shane's pathology report looked very favorable - the chance that Shane's cancer will re-occur is low.

Update from the home front

Shane's recovery has been slow since he came home, much slower than we expected.  Shane's surgeon did say this was to be expected - about 10% of people who have this surgery experience an infection and go through a slower, more difficult recovery.  Shane has not had much of an appetite.  I've been trying to entice him with homemade meals, with limited success.  He's been eating about 1200 calories a day.  He also lost a lot of strength (and a lot of weight) while he was in the hospital, so just getting out of bed in the morning takes a lot of energy. Since he opted not to go to in-patient rehabilitation, he will have out-patient rehab instead.  That should start at the end of this week or beginning of next week. Once he is strong enough, he will go to a physical therapy clinic.  The doctors say his strength and energy will improve once his nutrition improves, but it takes a while to begin eating normally again after abdominal surgery.  The visiting nurse has been coming every other day, which has been great.  She ordered all the medical supplies that we need to have on hand at home. Shane will see his surgeon on Friday for a check up to see how his infection is healing.  A home health aide will begin visiting for about 10 hours a week, starting Monday.  He/she will help us out with basic chores around the house.  Shane's oncologist says the earliest she would begin his next round of chemo is the first week of March.

Do a load of laundry?

Hi everyone, It's Alex.  I know many of you have had trouble accessing our "Losta Helping Hands" website where we put up posts when we need help with chores.  So, I'm also posting here.  If any of you have time to do a load of laundry today, please call Shane to arrange a time to pick up.  (510) 282-1992  We have a few bedding items that we can't send to the pick-up/drop-off laundry because their dryers are too hot and they will roast our stuff.

Homecoming

Shane came home from the hospital today.  He is tired, but he was able to walk from the cab to the building, and he has been walking around the apartment a bit.  His first order of business when he came home was to fix himself a cup of tea.  (Thanks John, Jim, and Laura for the gourmet tea bags!)  The visiting nurse service is going to come see us tomorrow.

Rounding the corner

So much has happened in the 48 hours since Shane's last operation.  He is off of the IV pain medications and gets Vicadin only on request.  As he puts it, he's now on the "opiate-lite" plan.  He can walk without a walker and he is off of oxygen.  The doctors are saying Shane will be able to go home soon if his appetite continues to improve and the symptoms of infection don't come back. Shane has lost a lot of weight, so a nutritionist came to visit yesterday and suggested that Shane try a high-protein diet supplement.  They bring this drink every meal now, but Shane isn't too eager to drink the foul-tasting stuff.  I contribute to Shane's weight-gain plan by picking up a glazed doughnut every day on my way to the hospital.  On request, I brought his favorite potato-kale soup from home for lunch yesterday.  His mom brought spaghetti for dinner from one of the Italian restaurants near the hospital and Shane ate it right up!  In preparation for Shane's home coming, I will stock the kitchen with lots of calorie-dense foods: guacamole and corn chips, bacon and eggs, coconut sorbet, and peanut butter.  If only we could all be so lucky to have a doctor tell us to eat lots of these foods!  The doctors also suggested Shane go to rehab to regain some of the strength he's lost during the last 2 weeks of fasting and bed rest.  He will receive rehab on an out-patient basis.  

The operation went as planned

Shane's operation today was successful.  He received twilight sedation, so he was fully awake about an hour and a half after surgery.  He immediately asked what was for lunch!  His appetite was better today than it has been over the past week, which makes me think the surgery is helping him get better.  The doctor said everything went as expected during the procedure - he rinsed out the abscess and put in the drain.  He also said he didn't see any signs of ischemia, which is a reduction in blood flow to the tissue that can signal more problems in the future.  The doctor said we have to play it by ear now and see whether the infection clears.  I asked if Shane could come home from the hospital this week and the doctor said he can't make any promises.  So, we'll just take it day by day.  Thanks, everyone, for your words of support as we continue on this journey.

Another operation

Shane's test results indicate he continues to have an infection at the site of the surgery, even though he's been on antibiotics for two weeks.  He still has one of the two catheters that they gave him during the surgery last Sunday, but since the CT scan shows fluid building up again, they will do a simple procedure to put the second catheter back in.  The doctor said this infection will not resolve itself with antibiotics alone, and part of the reason Shane is having so much trouble healing is because of the radiation treatments he received before the surgery.  Luckily, tomorrow's procedure won't involve any incisions, can be done without full anesthesia, and will only take 10 minutes. 

Doing the dance again

Shane had a fever of 101.5 tonight, so he repeated the dance he knows so well by now: urine sample, blood culture, chest x-ray, CT scan.  Same routine, different day.  The on-call doctor hypothesized that Shane's fever was caused by a topical infection at the site of his IV needle.  We shall see.  Meanwhile, there were some successes.  Shane managed to eat a bit more today.  Using the walker he walked a loop around the oncology unit without his oxygen.  He sat up in a chair for three hours. A respiratory therapist came in the afternoon and said Shane's lungs sounded clear, so he managed to avoid having her thump on his back to make him cough up phlegm.  Shane received numerous calls from friends and was too tired to get back to all of you, but he asked me to tell you he'll call you back as soon as he can!

Breakfast for two

This morning I made homemade oatmeal and hard boiled eggs and toted them to the hospital so that Shane and I could share a quiet breakfast while we looked out the window at his view.  Shane still doesn't have his appetite back.  He says food just doesn't taste right, like when you have a cold.  Even so, he managed to eat a few spoonfuls of oatmeal and drink some orange juice.  He ate half of the egg, a few saltines, and a little bit of chicken soup at lunch.  I didn't mention this before, but Shane did have another 101 degree fever on Thursday night even though he is still on antibiotics.  Shane's doctors ordered a urine culture and another complete blood count.  He may also have another CAT scan on Monday to make sure that no abscesses have formed in his abdomen or pelvis.  His diuretics and albumin are working, so much of the swelling, edema, or "third spacing" he experienced in his body after the surgery has subsided.  Third spacing is when fluid collects in the spaces between your organs.  I don't fully understand the phenomenon, but if you are interested in the chemistry of it, you can checked out this nursing article on third spacing.  Shane also had a lot of visitors today.  I visited in the morning and his mom visited in the afternoon.  His friend Tom from Tuesday night dropped by.  We also met Dave, the son of Shane's aunt's best friend, and his wife Crystal, who happen to live in New York.  They brought Shane some delicious mint tea and we had a nice visit.  Seems like all the visitors wore Shane out, because he told me he didn't have the energy to watch The Wire tonight - that's our favorite TV show that we watch on DVD.

View of the Hudson

Shane moved back to his bed in the oncology unit last night around midnight.  They saved his room for him, which is excellent because it has a view of the Hudson and the George Washington Bridge.  It is lit up at night and the cars twinkle as they go by.  His contact information is:
     New York - Presbyterian/Columbia
     Milstein Hospital Building
     177 Ft. Washington Ave.
     6 Hudson South, Room 240 B
     New York, NY  10032
     (212) 543-7235
Shane has been getting a nebulizer, which is helping him breathe more easily.  (It's also better than the alternative treatment for fluid around the lungs, which involves a big needle.)  Shane's doctor promoted him to a regular food diet today.  Shane's stomach has mixed feelings about that.  He is having an easier time getting out of bed and sitting up in a chair.  He also has less pain.  He's going to hang out in his hospital room and enjoy the view for the weekend.  We'll see how next week goes...

Allowed to drink again

Shane was really tired and slept a lot today.  His physical therapist came by in the morning and Shane set a new record for walking.  Using the walker, he was able to make it out of his room and down the hall a bit.  He also got his nasal-gastric tube and urinary catheter out today.  Hooray!  Shane's surgeon came to visit twice and noted that Shane is having increasing difficulty breathing.  They said Shane does not have fluid in the lungs (according to his previous x-rays), but it looks like he does have fluid around the lungs, which is called pleural effusion.  This could be the result of having general anesthesia twice in eight days.  If that continues, they will do some diagnostic tests and they may have a thoracic surgeon come and drain some of the fluid out in a fairly low risk procedure that could give Shane a lot of relief.  We also visited with Shane's ostomy nurse who said Shane's ostomy looks like a rose.  She gave us a lesson on ostomy care and told us some eyebrow-raising stories about the things she's seen pop out of people's ostomies, like an entire intact green bean!  She said everyone should chew their food more.  The most exciting development is that after three and half days of eating and drinking nothing other than ice chips, Shane was finally permitted to start a liquid diet.  His first request was iced tea.  Yummmm... caffeine!

Baby steps

Shane is still in the step-down unit, still on oxygen, and still has the nasal-gastric tube and other drains tubes in.  He is also still receiving antibiotics.  He is in less pain, but he's tired because his heart is beating faster than normal and that takes a lot of energy.  Nevertheless, things are slowly improving.  He sat up in a regular chair and even did a little walking in his room with a walker.  His intestines even started turning back on little bit.  We talked to his surgeon today and he said Shane will be in the hospital for about another week.  He also said Shane's pathology report came back today and looks good.  As a result of the chemo-radiation treatement, he was "down-staged" to stage 1 (T2N0).  In other words, the lymph nodes they tested were all negative for cancer, which means the chance of re-occurance is low. 

A tough day in the step-down unit

Shane spent the night in recovery and moved to the step down unit this morning.  He was resting and sleeping a lot, which was good because his recovery nurse said he was awake much of the night.  He wasn't eating or drinking anything all day, but unfortunately he began vomiting bile in the afternoon.  The nurse said Shane's intestines had likely stopped working temporarily, which is quite common after surgery.  Peristalsis is the muscle contraction that keeps things moving through your digestive tract, if that stops then things can get backed up in your system.  In other words, bile can collect in your stomach and make you sick.  They put in a nasal-gastric tube to drain the bile and relieve the pressure in his stomach, and Shane looked a lot better afterward.  The doctor and nurse said they'll encourage him to sit up and walk a little bit tomorrow, which will help get his intestines moving again. 

Emergency surgery

After Shane's CT scan was finally performed early this evening, he was wheeled downstairs for emergency surgery.  The scan showed that he had pockets of fluid and air in his abdomen.  I asked him if he was scared before the surgery and he said no - he was mostly disappointed that he had to have another urinary catheter.  (Those things hurt!)  The surgeons reopened the surgical incision and found a small "leak" had formed, so bacteria from his intestinal tract had migrated into his abdomen and were causing an infection.  They've cleaned the area out and will keep drainage tubes in him for a little while.  He'll spend the night in the post anesthesia care unit (aka "recovery") for close monitoring.  Tomorrow he will go to a "step down unit" for further monitoring.  I saw him after the surgery and he looked good - way better than before.  His pain level was a 10/10 this morning, midday it was 5/10, and after the surgery it was 3/10.  Please send him your prayers and positive energy while he recovers from this second surgery.  

Sitting with the unknown

Shane is on antibiotics but he is still having high fevers on and off.  His doctors aren't sure what is going on since his white blood count is normal.  We are waiting for the results of another chest x-ray he had yesterday.  Oddly, Shane doesn't have any other signs of infection.  For example, he isn't coughing at all, so it isn't clear whether he has pneumonia or not.  Shane has also been having sharp abdominal pains.  He's going to have another CT scan on his chest and abdomen today, and they are doing more blood work.  I'll be sure to put up another post as soon as we have more information.  

Pneumonia

It looks as though Shane may have developed pneumonia.  He had a fever of about 102.4 last night which subsided but then came back this afternoon and hit 103.  He's had a series of tests on his blood, urine, etc., and based on a chest x-ray the doctor is recommending a course of antibiotics for a possible case of pneumonia.  The diagnosis isn't certain, but Shane's surgeon doesn't want to take any chances.  Shane has been on oxygen ever since the surgery because he had general anesthesia and that can affect your ability to breathe afterward.  So, he is staying on oxygen and should be starting his antibiotics as soon as the pharmacy sends his medication up to the oncology unit.  He is sleeping a lot and doesn't feel very good.  

Phone number

Shane is feeling better.  He had physical therapy today and was able to stand up and get into a chair.  Other than that the day was fairly uneventful.  Shane is ready for phone calls and he asked me to post the phone number for his room: (212) 543-7235.  Visiting hours in the oncology unit are noon to 8 p.m. Please call before coming.  He reports that the hospital food leaves something to be desired.  SOS.  SOS.  If you see matzo ball soup on your way here, please pick some up.

Room information

Shane has finally been transferred to a room in the oncology unit.  Hooray!  His new stretcher is much more comfortable than the hard stretcher he had in the recovery room.  He is not ready for visitors or calls yet, but I will post his phone number as soon as he is.  If you would like to send flowers, his room information is as follows:
     New York - Presbyterian/Columbia
     Milstein Hospital Building
     177 Ft. Washington Ave.
     6 Hudson South, Room 240 B
     New York, NY  10032

Still waiting for a bed

Hi everyone, Shane is doing better and better.  He's alert and smiling a lot, especially since he's got his magic pain button that he can press every 10 minutes to get a dose of pain killer.  Unfortunately, he is still in the recovery unit.  His surgeon wants him to go to the oncology unit and the beds there are full.  A bed was reserved for him this afternoon, but the patient who was supposed to be discharged has not left yet.  I'll post his room information as soon as he is transferred!  Alex

Fever be gone!

Shane's fever is gone but he is still in the recovery unit.  He had a bit of tachycardia last night and this morning, i.e. his heart was beating a bit faster than normal.  This can be a sign of a pulmonary embolism (a blood clot in the lungs) so the surgeon ordered a chest x-ray and CAT scan.  All of the tests came back normal and Shane should be transferred to a room sometime this afternoon.

Hospital Update

Hi people, It's Alex again.  In case you were planning to call or visit the hospital today, I suggest you wait a day or two.  The hospital called this morning to let me know that Shane developed a fever last night and they are keeping him in the post-surgical recovery unit so the nurses can monitor him more closely.  That means he isn't in the room they assigned to him last night and he can't have visitors, except for brief visits from family.  The surgeon said Shane would be in a lot of pain the first 36 hours, and he is mostly sleeping because of the pain medications.

Surgery report

Hi everyone, This is Alex reporting on Shane's surgery.  The surgeon was very pleased with the outcome of today's surgery: he said it was the best case scenario.   Shane received a temporary ileostomy rather than a permanent colostomy.  The surgery was done laparoscopically (with a small incision and cameras), which is less invasive and has a shorter recovery time than traditional open-abdomen surgery.  We saw Shane in the recovery room this evening and he was awake enough to talk and smile.

Hospital stay

I am scheduled to have my surgery next week on Tuesday January 12.   I will be recovering in the hospital for at least 5 days.  During that time if you'd like to visit or contact me please check my blog for information.  Alex will post my hospital room and the room phone number once I am able to receive calls and visitors.