Papa's Got a Brand New Bag

" ' Papa's Got a Brand New Bag'  is widely considered the first recording to showcase what later became Brown's signature musical style, and marks the beginning of the development of funk. As Brown sings the praises of an old man brave enough to get out on the dance floor of a nightclub, Brown's band provides a horn-heavy backdrop with a prominent rhythm and an electric guitar riff for a hook."  - Wikipedia 

Old man is right and an apt description for my beginning with a new bag.  I was given a temporary ileostomy to divert my digestive track until the surgical area had healed and my treatments were finished.  I had a reversal surgery last May to reconnect the plumbing.  Of course it's never the same as before.  In my case it turned out that the bad days outnumbered the good.  It got to the point that it affected my quality of life, my ability to care for my child, and to provide for my new family.  In fact, I would say this reversal been a real pain in my keister.  No butts about it.  I am ready to ... ahem but this reversal experience behind me.  Hey, all cancer patients have to enjoy a good crack now and then.

I am choosing to have a permanent colostomy and with it a new bag.  Fortunately, I have that option thanks to my new lovely wife and her pretty kick ass health insurance.  It won't be an entirely new experience since I lived with an ileostomy bag for 2 1/2 years.  In fact, I am quite comfortable with idea of having a colostomy.  Believe it or not, I am even looking forward to it.  I will be able to eat spicy food again.  So let's hear those horns cause dada will have a brand new bag.

 

Happy Winter Solstice!

Cheers!  Here's to a new healthier year.  In November, Mom and Robert took Alex and I to new beer bar in Wilmington called the Satellite.  I am feeling better, have more energy and have been enjoying beer again.  I even worked a few nightshifts in December editing a Bio episode on the Jackson 5.  Good news the fractures in my pelvis and sacrum seem to be healing and no longer appear on the MRI.  The not so good news is my bone density scan revealed that I have osteoporosis of the spine.  This means that my olympic snowboarding career is over before it even began. :)  

Seriously, I will have to make some lifestyle changes including diet and exercise, and preventing falls.  I have been taking calcium and vitamin D supplements since September and I will likely start on medications such as bisphosphonates and others next month.  I have signed up for a Tai Chi class which is good for balance.  I will also be walking every day for at least 30 mins.  Soon I hope get on an elliptical machine and start weight training.  All of these low impact weight bearing exercises are good for building bone.  I will also be adding an anti-slip shower mat to our tub perhaps like Mr. Blue Frog here.   

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.