A little while later...

Sorry I haven't posted in a while.  Haven't been spending much time with my computer.  But there is a lot of news.

I went to Dana-Farber for my appointment with the Swallow Therapist and Nutritionist.  They were surprised to find out that my stomach feeding tube had been removed.  They weren't upset though.  I gained four pounds in the three weeks since I stopped feeding using the tube.  Generally, people lose weight.  They were happy with my diet and progression of adding new foods.


My tube is healing well.  While I was in seeing Swallow and Nutrition, I asked one of the nurses to check the wound.  She thought it looked good.  My steri-strips still haven't come off the incision where my port was removed.  Ann's getting ready to pull them.  Will be two weeks on Wednesday.

I get up at seven, eat breakfast, and take a nap while the food digests.  A month or so ago, I couldn't ride my LifeCycle - my legs weren't strong enough to drive the wheels at low resistance.  Started on the bike again last week.  Am up to 24 minutes at level one.  Before treatment began, I did 36 minutes at level four every morning.  I am getting stronger.  Plan to try 36 minutes tomorrow or the next day, then start gradually upping the level.


I've been going into work in the afternoon for the past couple of weeks.  Still getting back in the swing of things.


My first followup appointment at Dana-Farber with my oncologist is next Wednesday.


Thanks everyone for your support and comfort through my illness and treatments.


Love...


Richard

Twofers!

Today we went to Brigham & Women's Hospital to have my Power Port removed.  It is a simple day surgery procedure.  We left early; we wanted to be sure to be on time.  The traffic was beyond heavy.  It took (perhaps) longer than any other drive into Boston.  When we got there, a half hour late, I signed in and was immediately brought down to pre-op.

I was concerned about my stomach feeding tube and potential infection (that was an issue at St. Vincent's Hospital) and told my surgical nurse.  The surgeon had a simple solution.  "Why don't I just take that out too while you're under sedation?  I won't even charge extra!"  Ann said go for it.  Normally, the tube comes out without sedation or pain meds - literally yanked out and covered with a dressing.  I was concerned that we were making a decision without my oncologist's approval.  The surgeon paged Dr. H. who said sure go ahead and remove it.   I have an appointment next Wednesday at Dana-Farber with my Nutritionist and Swallow Therapist; they were supposed to authorize the tube's removal.  They work for Dr. H. so no toes are stepped on.  (Don't I worry about this stuff too much?)

The procedures went smoothly and quickly.  I really liked the surgeon, she is compassionate and has a sense of humor.  All the nurses and anesthesiologists were nice, too.

So now I'm portless and tubeless and just a little bit sore.  I have to take it easy for a few days while I heal.  The port is just an incision.  The tube is an open hole the size of the tube.  It will scab over and close on its own.  Both have dressings.

My job now is to continue to eat, not lose weight, and slowly broaden the variety of foods I eat.  I'm looking forward to sandwiches, but bread (being dry) is one of the last foods I'll be able to eat.  Next Wednesday, the Nutritionist and Swallow Therapist will give me more suggestions on where to go (and how) food-wise.

I went into work yesterday and spent a few hours getting my workstation updated and more, my brain updated.  Getting back into the swing of things will take me a while, but I'm ready.  Next week, if I'm healed sufficiently, I'll start going in for afternoons daily and work my way back into a full day's schedule.

Thanks everyone for your support and comfort.  It means more than I can say.

Love...

Richard

Penne bits

We went to Pizzeria Uno and my meal there was less successful.  Found myself choking on penne with vegetables in a tomato sauce.  Also had french fries and a little salad.  (How I love salad - got to keep trying!)  Last night, I ate the penne leftovers with a plan.  I cut each piece of pasta into thirds and swallowed each third before trying another.  It worked.  I'm feeling better about eating and more confident. My swallow muscles are getting stronger and the food more diverse.  Hopefully, on September 22nd, when I meet with the Nutritionist and Swallow Therapist, they'll ok my stomach feeding tube coming out.  My weight has to be stable and they have to approve my diet.

My Power Port is being removed on Wednesday, September 15th (not the 13th as I wrote before) - it's simple day surgery.

I keep walking everyday.  It's hard to see progress with my stamina, but I'm sure it's there.

Thanks everyone for your support and comfort.  It's been a long process but I finally feel like I'm getting close to being normal again.

Love...

Richard

Real Food

Happy Labor Day!

Saturday, Dan visited and we went out to El Basha, a Middle Eastern restaurant here in Worcester.  I was able to eat some salad (how I've missed salad!), a entire bowl of thick lentil stew, and some french fries.  It didn't go perfectly but I was able to swallow the food.  This is a pick-me-up!

Tonight, we're going to Pizzeria Uno with Larry & Laura.  I hope to be able to take on more salad and pasta marinara.  Keep you posted.

I'm having my Power Port out on September 13th - simple day surgery.  If my weight is stable on September 22nd (same as my last weigh-in), I can have my stomach feeding tube removed!  I'm working (eating) hard to meet that goal.

Thanks everyone for the kind words of support and comfort.  I've never felt alone through this whole journey.

Love...

Richard

Eating is the thing

We are lighter knowing the cancer is gone.  It's been a long road since I started treatment on February 2nd (my birthday.)  My big challenge now is eating.  Since September 1st, I haven't used my stomach tube to feed.  On September 22nd, I see the Nutritionist and Swallow Therapist and if my weight is stable, the stomach tube will be removed.  On September 13th, my Power Port (a device that sits below my chest skin and hooks into a large vein - chemo, other medications, and blood draws are accessed via the port) will be removed.  It's day surgery.  My understanding is the stomach tube is just yanked out in an exam room!

Eating is a challenge because food doesn't have much flavor and I need to eat about 720 calories per meal.  My body is still healing and needs the extra calories.  My taste buds are still coming back and I still have areas in my mouth that are raw (sensitive to acidic food/drink).  I have to be patient and keep eating.

I went to the dentist yesterday and had my teeth cleaned.  Head and neck radiation is hard on the teeth (well, hard on every part of the mouth, tongue, and throat) and I was concerned that the cleaning would be tough and that I would have other dental issues.  The cleaning felt like any other cleaning, probably easier because my mouth has gone through a lot.  Dr. Jeff came in and checked out my mouth.  It's in good shape, just an old filling that needs replacement (we knew about that before cancer treatment.)  Radiation weakens the teeth and I need to brush twice a day with a prescription fluoride toothpaste, let my teeth "marinate" for half hour after each brushing.

Thanks everyone for your comfort and support, for your greetings and celebration of cancer free me.  You all carried me through the chemo and radiation and recovery and I was heavy.

Love...

Richard

Cancer free!

We're just back from Boston and Dana-Farber Cancer Institute.  My scans were good.  I'm cancer free!

They stuck a rubber hose up my nose (after spraying no pain stuff) and looked around.  I avoided some of the potential side effects (the extreme ones) of the radiation, but still have plenty. 

Now I need to work on my eating.  I'm still dependent on my stomach feeding tube.  Once I can consume the necessary calories (720 per meal, three times a day) orally, they'll remove the tube.

Anyway, great news today!  Thanks everyone for your good wishes, prayers, and support.

Love...

Richard