Reversal Surgery Over

Although I was really looking forward to the reversal, I didn't think much past that.  I was in the hospital overnight and then set loose with instructions to eat a bland diet, not drive, and not lift anything heavier than a milk jug for a few weeks.  Well, I didn't listen very well.   A bland diet isn't exciting and I kept trying to eat some of my favorites.  After a painful beginning,  I started adjusting to my new situation.  I flew down to visit my Mom in Florida less than a week after surgery.  She was happy to drive me around and we had a good time getting some projects done, going on long walks, shopping, and relaxing together.

Now I'm almost four weeks out from the surgery and every day gets a bit better with regard to digestion.  I am adding fresh fruits and veggies into my diet a little at a time.   I am exercising as much as I was before and even painted my daughter's bedroom and helped put sealer on the deck.   No more tests or doctor visits until December.   Hopefully the worst is over and I will just have the peace of mind that periodic tests will continue to prove that the cancer is gone.  Thank you again for all the support!

It's Official - I'm Cancer Free!

Yesterday was the big day for results.  I had bloodwork, a CT scan, and an Xray.  All tests indicated that there is no evidence of cancer and that my body has recovered well from the surgery in March. So ... the surgeon has scheduled me for reversal surgery NEXT WEDNESDAY!  I can't believe that this cancer episode is coming to an end, but it is slowly sinking in.   I will be monitored for the next 5 years at least to make sure I stay cancer-free, but the odds are in my favor that I will stay cancer-free.

Thank you for all the prayers, cards, emails, meals, special deliveries, rides for the kids, and phone calls!   Thanks especially to my husband, Dave, for being there for me and handling all the things over the past 9 months I just couldn't or wouldn't do.  My circle of support has really been a net to prop me up through a very scary time!   THANK YOU!!!  

All done with chemo!

I'm not sure anyone is even looking at this blog anymore since I have neglected to post anything since May, but I wanted to document this happy day.  I took my last chemo pills this morning and I'm feeling great.  Metal taste, tingly feet, and dry & irritated skin are still present, but hopefully not for long.  My next milestone, treatment-wise, will be a CT scan showing that the treatment worked.  That will happen on September 18th.  I will also meet with the surgeon who removed the tumor to schedule a surgery date to reverse my ileostomy.  I am looking forward to THAT surgery!

So what have I been up to since my last post?  We celebrated Erin's 8th grade graduation at the end of May and then Daniel's high school graduation in June.  We also traveled to Florida in June and July for family reunions on both sides of the family.  The picture above was taken at the height of the bridge between Sarasota and Bird Key.  I have kept up exercising almost daily since the beginning of radiation in December, when my doctor said that was the best thing I could do for myself.   I do feel all the exercise helped me get through chemo with so few side effects.

We bought 2 SUPs (inflatable Stand Up Paddleboards) in July that we can take to lakes around NC and also to the Gulf Of Mexico in FL.   Isn't this amazing to believe it is inflatable??   We are able to roll them up and put them in a duffle bag for travel back and forth!

In August we traveled to Niagara Falls, Montreal, and Quebec City for a family vacation.  We had a wonderful time and I was able to keep up with everybody as we walked everywhere.  Of course Katie had an exercise app on her phone and tracked that we walked over 25 miles that week.  (Our oldest child, Matt, ended up spending that week in Tallahassee moving his girlfriend into a new apartment and did not make the trip.)   This is a picture in Quebec City with the famous Frontenac Chateau hotel at the top.  

Summer is over now and we are getting into our new routine with only 2 children left at home.  It is strange!   Thank goodness Matt and Daniel are nearby and we are able to see them occasionally.

Well, that's all for now.  Thanks for checking up on me!

IV Chemo #2 Down!

All was well with my bloodwork on Thursday, May 15th, so I was able to proceed with my next IV chemo treatment.  In preparation, I drank extra fluids the day before and kept my forearm warm with a heating pad until right before the "stick".  The IV went in much easier and I feel better about not getting a port - especially now that I only have 4 more to go.   The 3 hours went fast and uneventfully until it was time for me to leave. Then, my legs just wouldn't work again and I felt tipsy.  The nurses and doc were trying to laugh with me, not at me, but I thought it was all very funny!   The gave me benedryl and had me wait until the reaction was over and I felt like I could go home.  I still had to be wheeled out to the car, due to overall weakness.

I'm having all the same weird nerve-ending side effects, but at least this time, I know roughly what to expect and how long the worst will last.  Today is Sunday and the leg cramps are already going away, thank goodness.   I think it helps me to keep moving around, even if it's at a slower pace.

Look What My Crazy, Generous Daughter Did ...

Erin cut off her beautiful long hair to send to Locks of Love so that hopefully someone else can benefit from her thick, healthy tresses.  Of course, she is still beautiful with her new short bob haircut! 

I am feeling like my usual self now and seem to have gradually gotten past all the chemo side effects. I took my last dose of pills for round #1 last night!!  I plan to enjoy this week of normalcy until the next IV chemo (May 15th).  

Thank you to Tina and Amie for taking care of multiple dinners for us this week!  Thanks also to Jesus for the beautiful yellow miniature rose plant. 

One IV treatment down & 5 to go.

So my first IV treatment day was pretty smooth. My bloodwork looked great (all normal), doctor visit was quick but informative, and we only had about a 40 minute wait to get a cubicle for the IV treatment. Unfortunately I had to get stuck twice - once for blood and a different spot for the chemo.  I might rethink getting a port.  The IV site was not feeling good after close to 3 hours of drips.  I thought I had great veins...

First I receive saline and anti-nausea drug(s).  Then the chemo runs for about 2 hours.   I got up once to walk around after about an hour and all was well.  Soon after I had to stop drinking my cold drink because my throat felt like it was closing up (but it isn't really) - first side effect I noticed.  Other than that, I was surprised by how fine I felt - until it was time to get up and leave.  My legs were not cooperating - they felt like they were asleep and very weak.  I had to wheelchair out of the clinic to the car.   Heaven forbid if I fall - then I have to wear big yellow booties for all to see every time I'm in the clinic - no way?!  Thank goodness Dave was with me all day to hear the information, see the process, get me out of there quickly, and drive us home.

By the time I got home, my fingers were like ice and everything I touched that was cold felt like it was covered with tiny needles.  It doesn't hurt, but the instinct is to pullback right away because it doesn't feel great either.   My eyelids were twitchy and my calves crampy.   I just have to wear gloves and think before I eat, drink, or touch anything hot or cold.   The interesting thing about the fatigue is that it actually helps to combat it by getting up and moving around - at whatever pace I can manage.  I may walk a bit funny due to my cramped calves, but I have the energy to do some slow walks around the house and even ride the exercise bike for a bit.  I was able to drive this morning, too, which was a concern.

Now I just take chemo pills for 2 weeks straight and I get to look forward to a week off of all drugs before my next IV treatment day at Duke on May 15th.

Thanks to Mollie H for a delicious beef stew and spinach salad.  It was great - even at room temperature for me.   Thanks also to Bill S for the surprise delivery of another great meal.  We are all set for a while!

Great News at post-op appointments!

Today I had 2 return appointments at Duke: one with the oncologist and one with the surgeon.  All agreed that I am recovering from surgery very well and that I will be able to start situps (yes, I asked) and the second round of chemo 2 weeks from today (April 24th).   I'm off all medications, exercising daily without any problems, and eating my normal diet.   They also said that the 3 lymph nodes that tested cancerous were not unexpected.

The Plan (repeats for a total of 6 cycles):

Day 1:   bloodwork, oncologist appt, IV anti-nausea, IV chemo PLUS chemo pills in morning and at night
Days 2-14:  chemo pills in morning and at night
Days 15-21:   Nothing!  I get a break to recover before next round.

There are many possible side effects, but that doesn't mean I will experience them all.  Since I tolerated the first round of pills so well, hopefully I will fare OK during the next stage.    

Here's a picture of me at the UNC/Maryland lacrosse game last weekend.  Erin and her middle school team played a mini-game during the halftime.   I felt like I should get to know the mascot since Daniel (son #2)
will attend UNC-Chapel Hill in the Fall...

Surprise From Erin's LAX Team!

Look what a nice surprise I got from Erin's lax team:

All the girls on the lacrosse team surprised me with a big bouquet of good wishes after a lacrosse game this week.  It was a very cold afternoon so I watched them win the game from a nice warm spot in a friend's car.  Erin scored!

Many thanks for all the emails, cards, books, meals, rides and both floral and edible arrangements!! I feel surrounded by love and prayers.     

A bit of new news ...

I am getting stronger every day and relying on pain medicine less and less so that is good news.  I have been able to go on walks every day since I got home from the hospital and several were over an hour long.   Last weekend was busy with a lacrosse tournament and a track meet on Saturday for my daughters.  I went to both events, but only got a picture at the track meet.  My Mom and my runner girl, Katie, are in the picture with me.  I have NOT shrunk - we are standing on stadium steps and I am still taller than both of them!

I did get some bad news today, though, that the cancer has spread outside of the colon.  Of the 25 lymph nodes that the surgeon removed to test for cancer cells, 3 tested positive.  I don't know much more than that except that I will have to have another round of chemotherapy after I heal from the surgery.   I don't return to Duke for a followup appointment with the surgeon and my oncologist until April 10th, so I probably won't know anything more until then.

Chris Is Home.

Chris was discharged at 2:30 today, and is recovering at home.  She is doing very well.

Sorry for the delay in posting news!  Duke Hospital is extremely busy for the patient, and caregivers.  There was rarely been any down.

Done!

I just met the surgeon, and she said everything went "as perfect as she could expect".  The tumor was completely removed, with a sufficient margin.

I am waiting to be called to the recovery room.

Not much from OR...

I just got the informative update from 2:53pm: "We're still working on Chris".  I think they updated me now because we passed the 6 hour mark, and the target range was 6-8 hours.

2 out of 3 Procedures Done

The first 2 procedures, which are the prep work for the oncologist, are done.  I met with one of the surgeons, and he said the tissues surrounding the tumor look good.  The oncologist started her part at about 1PM.

Got Paged!

Don't get too excited.  The message was from the docs at 11:55:  "The procedure started at 10.  We apologize for the delay informing you".  That's it.

So they don't get that 1/2 star back, yet.

She' Probably in the Procedure.

Anesthesia must have forgotten that they were supposed to tell me when they were ready to go.  My pager has been silent, but her status on the patient monitors in the waiting area is now showing 'In Procedure'.  It was 'In Prep'.

I'm going to need to dock them 1/2 star from the 'communication' section of our review.  We'll see if they can earn it back...

She's In!

We arrived at Duke right on time at 6, then waited about 45 min for Chris to get called to pre-op.  After she was prepped, I was allowed back for about 1/2 hour as the surgical team discussed the procedure and did their prep.  She was then taken to anesthesia, and I was banished to the waiting room.  The anesthesia step is supposed to take about 90 min, and I will be updated when that is done.  That will signal the start of the 'real' procedure.

The good news is that the surgeon, who has been very terse, and matter-of-fact when we have met with her in the past, seemed to be in a very good mood.  

Arrival Time is 6AM

As expected, Chris got the scheduling call from Duke today.  She will need to arrive by 6AM.

Surgery Prep is Complete.

After a LONG day visiting Duke for surgery prep, this is what we know:

• The procedure is scheduled for 3/12.  Chris will need to arrive at about 5:30AM, and the procedure will begin at about 8:30AM.  She will get a call with the exact times on 3/11.
• There will be 3 surgeons involved, and each will only be working on Chris.  That is, they have no other patients or appointments scheduled for the day.
• Because Duke is a teaching hospital, there may be residents in the room observing, but none are allowed to participate in the procedure. 
• The procedure will last 6-8 hours, with the clock starting at the first incision.
• Duke has a paging system that will provide me (Dave) with updates from the doctors during the procedure.  In reality, I don't know how often, or how much information they will pass on, but I will make an effort to update this blog during the day if I get meaningful updates.
• Chris is supposed to be up and walking the morning after surgery.
• Chris will stay in the hospital for 2-14 days.  Really, that's the range we were told.  The whisper number from the nurses is 3-5 days.
• Chris will be allowed solid food immediately, and have no diet restrictions.

CT Scan Shows No Spread!

Chris had appointments today for a CT scan, blood tests, a GI Oncology examination, and a Radiation Oncology examination.  The best news we got is that the CT scan showed no spread of the cancer to distant organs.  The blood tests also showed nothing unexpected.  The GI Oncologists and Radiation Oncologists were very pleased with the test results, and the exams Chris received today.

Surgery is now scheduled for Wednesday March 12.  Chris will meet with the surgeons on Thursday (3/6) to discuss the procedure details.

Since the radiation treatment ended, Chris has bounced completely back, and her energy level is as high as ever.

Radiation Done!

Chris walked out of Duke Tuesday morning with a radiant smile.  She completed 27 straight days (weekdays) of radiation and chemotherapy.  She has tolerated the treatments much better than expected, and the docs are pleased with how things have progressed.  Her energy level is expected to continue to decrease for another 2 weeks before it starts to turn around. This is due to the residual effects of the chemo and radiation.

Chris is now in recovery mode, and does not plan to see any docs or have any treatments until March 4 to prep for her expected surgery on March 17.

With no news expected, we do not plan to update this blog again until early March.

5 Radiation Days Left...

Chris had her regular radiation treatment Monday, Tuesday, and Wednesday, and a meeting with radiation oncology Tuesday morning.  She is still proceeding better than expected.  It's hard to believe there are only 5 radiation days left.  Chris has gotten through it great, so far, but the radonc docs are warning the side effects are still coming.

Tuesday night and Wednesday morning, it snowed 5+ inches in Raleigh, which is a LOT of snow for Raleigh in a single evening.  We got to Duke 3 hours late for the scheduled appointment, but  they were able to work Chris in, and she is still on schedule.  Most of the Raleigh area is closed for business, but Duke sends transportation to pick up their clinic employees if they cannot make it to work, which is great, because many of the patients are staying in local hotels to receive treatment.

Below is a picture of Chris, with Bill, and Chris' friend, Tina.  Bill is Dave's waiting room buddy.  His wife, Julia,  finished with radonc on Wednesday, hopefully forever!.

Chris, Bill, and Tina

We did have had some fun this week, too...

Sledding...

And a Canes game...

At the Canes/Senators game

74.075% Done with Radiation.

Twenty radiation days down, and seven left!  Chris is slowing down a bit more, but it is not as bad as we had been warned, or expected.  From what the docs are saying, her energy level will continue to decline for the next 2-3 weeks, before it starts to recover.

Looking toward the 2nd phase of treatment, Chris will have her next CT scan on March 4, with results on March 6.  Surgery is tentatively scheduled for Monday, March 17.  

Thanks to Erin and Wynn for 2 great meals, and to Wynn and Adele for driving this week!

Radiation Days 17 and 18

Chris completed radiation days 17 and 18, and the treatment is proceeding as expected.  She is still exercising and maintaining her daily schedule, but the chemo has slowed her somewhat.  Her doctor recommended that she exercise less vigorously, and take an occasional nap.

Tuesday, she had her weekly radiation oncology clinic visit.  Appointments were made for 3/6 with the surgical team to reevaluate Chris' condition (after radiation treatments), and discuss surgery dates. 

Thursday, Chis will have her weekly GI oncology clinic visit, blood test.

Over Halfway Through Radiation

Wednesday was day 14 of the 27 day radiation treatment plan, meaning Chris is past the halfway point. Thursday, Chris had a radiation treatment, followed by a blood test and a meeting with GI Oncology.  Friday was radiation day 16.  The Thursday blood test showed that some of the counts have dropped slightly below the normal range, as expected at this point in the treatment.  Chris was advised to duck when sneezes or coughs are aimed at her, and be a little more cautious with anyone she comes in contact with who might be sick.

Chris is also starting to feel more worn down in the evenings, which Duke attributed to the chemo, but getting up before 5AM every day probably doesn't help either.

Duke asked to move Chris' normal radiation appointment to 7:30.  Blah!  But, it gets her back home most days before 9, and  there is only one appointment ahead of her, so it is unlikely things will get backed up before her appointment.

Thanks to Wendy and Alicia for agreeing to drive with Chris, and thanks to Tina and Alicia for dinners!  Thanks also to Adele for picking up Erin on Tuesday and Thursday.  We really appreciate it!

Wendy and Chris

The "Varian Clinac Series 21 EX Linac", aka: The Green Monster

 All is still well after radiation days 11, 12, and 13.  Chris is doing great, and her energy level is high.  Today Chris had her weekly radiation oncology checkup, and things are progressing as expected, so no news on the medical front.  The only news we have is that Chris' mom arrived from Florida yesterday to help around the house, and make sure Chris is doing OK.  She is with Chris in the pic at Duke below:

With no news, some useless information:

There are several radiation rooms at the radiation oncology facility, all color-coded.  Chris' machine is in the Green room, and only the patient and Duke staff are allowed in. 

Chris took this rare photo of The Green Monster

Whomever goes to Duke with Chis is left in the waiting area for about 20 minutes while the treatment is performed.  That duty is not too harsh.  The waiting area has an open bar (a snackbar...), with coffee, juice, and light snacks.  There are also internet workstations, a pianist on a grand piano, TVs, books, WiFi, and the latest People magazines.  Upstairs, in the basement, there is a quiet room, where the partaker can sit in a lounge chair and select from a number of music and lighting moods to experience.  There is also complimentary valet parking.

Some random facts we have learned about radiation:

• Radiation works through oxidation.  Therefore, taking anti-oxidant vitamins is prohibited because it would counteract the oxidation process.
• The radiation oncologist told Chris not to use the "bun warmer" in her car seat on the high setting until the treatment ends.  The low setting is still OK.
• The radiation facility is housed in the sub-basement of the clinic to prevent radiation from leaking out of the facility.  The walls surrounding the rooms are 4 feet thick, solid concrete, and lined with lead.
• Adequate hydration is required and monitored.  Coffee does not count as part of the fluid intake.  Decaf counts 50%.  Diet Coke counts 25%.
• The radiation machine model is a "Varian Clinac Series 21 EX Linac". Chris actually asked for the make and model during her consultation, and the oncologist called the radiation room while we waited for the information.  The radonc tech originally told the oncologist the wrong model, and the oncologist called Chris at home later in the day to correct the information.  I wish I knew what he thinks we are doing with that tidbit of information.

January 10 Update

Wednesday morning was a quick trip to Duke for a radiation zap.  On Thursday morning, Chris had a radiation treatment, blood tests, and a visit with GI oncology.  All blood counts are still in the normal range, but dropping due to chemo.  This is an expected result.  Friday morning was supposed to be a quick radiation treatment, but due to technical difficulties, Chris had to wait 1.5 hours for the issue to get resolved.

During the GI Oncology visit on Thursday, Chris pressed to get more details on future treatment after the current round of chemo/radiation ends on Feb 4.  GI Oncology expects nothing to be done for 4 weeks after radiation treatment is complete.  This includes no trips to the Duke clinic, no bloodwork, no scans, no chemo, no radiation, etc.  Chris and GI Oncology will be thrilled not to hear from each other during that time.  During those 4 weeks, 'residual' radiation will still be working on the tumor.  After that, Chis will go in for another MRI and CT scan, which is intended to give the surgical team information on how to proceed. That's all we know!

Thanks to Wynn and Dianna for driving this week and to Alicia and Tina for two excellent dinners!  Thanks to Adele for driving Erin to school on Tuesdays and Thursdays!

Thanks, also, to everyone who has offered additional help and support.  We genuinely appreciate all the offers, and will accept, when we need it.  Chris is still showing very little impact from the chemo, and is functioning at 100%.  We also have the luxury of Chris' mom coming on 1/13 for a few weeks of added support.  We do anticipate we will need more help in the next phase (likely in March).

Chris and Diana

Chris and Wynn

Days 6, 7, and 8 Done.

Radiation treatment days 6, 7, and 8 (out of 27 total), are done, with minimal issues.  Chris met with the radiation oncology team this morning (1/7), and there is nothing new to report.  Chris has not had any changes in appetite, no major side effects, and remains active, as usual.  Because of the Christmas and New Year's holidays, this week will be the first full week of radiation.  Most of the treatments are now scheduled for 7:45AM, which means leaving home at 6:30.  That stinks, but traffic is much lighter.

Next up are 'regular' radiation treatments on Wednesday (1/8) and Thursday (1/9).  After radiation on Thursday, Chris will have her weekly blood test and meeting with the GI oncology team.

With nothing new to report below is a picture of what the Duke Cancer Center looks like when it is 10 degrees outside:

First GI Oncologist Visit Since Treatment Started

Chris went for radiation/chemo treatment, bloodwork, and a visit with the GI oncologist this morning.  Everything was normal, there is nothing to report.  Radiation/Chemo will continue daily through week of February 3.  We will meet with the GI oncologist every Thursday morning for a checkup and to check blood.  We will meet with the radiation oncologist every Tuesday morning to discuss progress.

How is Chris Feeling?

Everyone is asking how Chris looks and feels.  The answer is no different!  She is doing her daily power walk or exercise bike ride.  She had some minor nausea (which was controlled by meds), and has a minor metal taste from the chemo, but no other side effects, yet.  The pic below is from this past Saturday, on Moore's Knob, which was a 4 mile hike with a 1000' vertical elevation from the start of the trail.

Treatment Started

Treatment started on 12/26, with no issues.  The biggest hassle has been driving 30-40 minutes each way to Duke for a 15 minute procedure.  We're pretty sure the trip time will increase after the holidays.  We have been going in the early mornings, but they will likely move us to a different time slot after the holidays.

Everyone who works at Duke has been outstanding.   

 

The radiation oncology facility is in the "sub" basement.  The elevator has floor G for 'Ground', and 0 for basement.  We go to floor 00...

Chris takes chemotherapy (pills) on treatment days, once in the morning, and once in the evening.

The Treatment Plan

This is the current treatment plan, as proposed by Duke:

• 5-6 weeks of daily chemo (oral) and outpatient radiation to reduce the size of the tumor.  This started 12/26, and does not include weekends or holidays.
• Weekly blood tests and consultation w/Oncologist.
• 4-5 weeks of recovery.
• MRI, CT scan, and blood tests to determine if the radiation changed anything.
• Surgical removal of the tumor.
• 8-10 weeks of recovery
• 4 months of chemo to mop up any leftover cancer junk.

The Diagnosis....

Hi, and welcome to Chris' Duke Treatment Blog!

This is how we got the diagnosis:

In mid November, after seeing some minor bleeding in the bathroom, Chris saw her primary care doc.  He did not find anything unusual, so he referred Chris to a GI.  The GI also found nothing unusual, so he ordered a colonoscopy.  The colonoscopy was performed on 12/5, and revealed a tumor blocking 2/3 of the colon.  The GI ordered a CT scan of the liver (closest major organ), which showed no spread of the tumor.  The GI referred Chris to a surgeon to remove the tumor.

Chris consulted her sister-in-law (an oncologist), who strongly encouraged Chris to get a second opinion at Duke.  Duke performed a chest CT scan, a pelvic MRI, and several blood tests.  The MRI revealed that the tumor had likely grown past the colon, and entered the uterus.  Duke is not 100% sure of this, but said this is likely the case.  They are proceeding as if the cancer is Stage 3, which means it has grown past the original site (the colon) and entered another local organ (the uterus), but it has not been found in a distant organ.  When she has surgery to remove the tumor (expected late Feb, or March), they will check the tumor's entry into the uterus.  The other possibility is that it could be normal thickening of the uterus wall, but they said this is not likely the case.