6.75 month update – There’s more to massage therapy than you may think!

For the past couple of months, I have been going to massage therapy once a week in order to  maintain mobility and prevent workplace overuse injury.   However, recently, we decided to do some work on my scarred tissue surrounding my incision.

I have always felt pulling around the incision.  It was most obvious with the valsalva manouver (increasing intra-abdominal pressure).  For example, sneezing was one of the worst things I could do.  I figured it was just adhesions built up around the surgical site and lack of mobility post surgery.  I started doing cross frictions (rubbing around the incision gently) once the incision had fully closed.  This helped to a degree but I still felt the pulling around the incision.

Once a week for the past three weeks, I have been getting about 10-15 minutes of work on my incision and the surrounding tissue.  Initially, the sensation was more of a ‘tearing’ feeling that needed to occur.  I describe it to my own patients as a “good but bad feeling”.  The week following the first treatment, my incision was pretty itchy.  This was a good sign though because it demonstrates that healing is occurring.  This week, I have noticed a large improvement in my overall spinal mobility.  I have increased extension as well as side bending range of motion.  There are times where I don’t even noticed my incisional site.

Besides the range of motion improvement, the scar appears remarkably better.  It is less red and has flattened out.  There is less of a ‘hard’ feeling along the incision.  Both my registered massage therapist and I are really excited about how fast this change has occurred.  The change has been so significant, we have started to document the progress.  Unfortunately, we did not take one before we started this process because we didn’t realize how fast the change would occur.  I have always known about wound healing (did you know that physiotherapist work with wounds as well?).  But it’s always nice when someone can work on it for you, right?

Besides my massage therapy update, I have one other big piece of news.  I decided to start taking vitamin B12 sublingually.  I wanted to take it prior to having my monthly blood work to see if it was a feasible option for me.  Some people can absorb it this way post gastrectomy and others require monthly injections.

**Aside: Vitamin B12 pairs with an intrinsic factor in the stomach allowing it to be absorbed through the small intestine into your blood stream.  Without this factor, very little B12 is actually absorbed into the bloodstream.  Taking it sublingually bypasses the intestinal route and is absorbed through the salivary glands into your bloodstream.  **

Last week, I went for my monthly blood work and my B12 was actually higher than it was back in June!  My doctor was puzzled why this was the case because I failed to mention I started taking it sublingually.  Anyways, this is fantastic news and I am glad that I will have one less doctors appointment to book and more autonomy.  I was so excited, I had to call my mom and give her the update.  She currently takes it by injection but maybe now she will have another option.  Who likes injections anyways?

Next week my gym membership is activated and I am more than excited to return.  Also, Sunday I am participating in the “Santa Jingle” which Brandon and I have been doing annually for the past three years.  It is a 5km run/walk dressed in a Santa Claus costume.  Initially, I wanted to run it but I know that would not be the best idea given that I am not fit to do so. However, due to my competitive nature, I am going to try run/walk it and beat at least one other person in my age category.  It’s nice to say you beat someone, but even nicer to say you did it without a stomach!! Joking.

Looking good. Feeling good.  That’s my 6.75 month update.

1395176_10153387321986632_4173722038898032449_n

Had to spread the word since it’s stomach cancer awareness month. For more information visit: http://www.nostomachforcancer.org

 

 

 

Hindsight 20/20

Four dilations later, I am feeling much much better.  A stricture is something I wouldn’t even wish upon my worst enemy.  It’s a difficult thing to explain to people who have never experienced it before but I am glad it is almost fully gone.  I managed to stay positive throughout the entire process; however, it was not an easy one.

Like most things associated with the CDH1 genetic mutation, it is not only a physical challenge but more of a mental challenge.  You know you need to eat to sustain your weight but your body won’t allow it to happen.  Each meal would initiate a new game of, “will it go down?”.  I would psyche myself up for each meal, chew food to a pulp, swallow, and then wait a minute to see if it would make it down.  This may be too much information, but I got really good at walking and spitting things up on the go.  It would take me close to forty five minutes to finish just a small portion of food.  Start dinner at the dinner table with Brandon, then move to the couch once he had finished eating.  Sometimes, I would avoid foods that needed to be chewed a lot because I was just tired of doing it.

Counting calories became a really big thing during the first few months of recovery.  I had to make sure I was consuming enough to sustain my weight.  I would try hard to eat all day but then step on the scale the next day to see that I had lost more weight.  At my lowest weight, I was 104lbs.  I was starting to look too thin and my family had mentioned it a few times.  This was not a battle I was willing to lose.

To complicate things, I would feel better after the dilations but about two weeks later, I would have issues eating again.  Physical stress.  Knowing that I had to go back to the specialists to be dilated again but not being able to get in for an appointment. Mental stress.  Watching your weight shed off and there was nothing you could do about it but keep trying.  More mental stress.  Starting to notice that your family is starting to worry about you….the most stressful.

Jump forward to the fourth dilation.  I haven’t had to run to the washroom in about three weeks and if I have to go, it’s because I’ve eaten too fast.  Something I can control.  I can eat close to a normal sized portion of food.  I’m feeling WAY better and I’m maintaining weight at a healthy 106.6lbs.  I know that I would have been a lot further ahead in my recovery if it wasn’t for this stricture.  However, there is no sense on dwelling on this and feeling sorry for myself.  It is in the past and as Rafiki states in the Lion King, “It’s in the past and it doesn’t matter…you can either run from it or learn from it”.  I choose learn.

When I was younger, I had fairly bad seasonal allergies.  One summer, I had hives all over my body.  I was so, so itchy all the time.  One day in the midst of scratching my arms, legs, and back, I told my mom, “I just have to make peace with my body”.

Almost 7 months post op, I can finally say that I’m on an even playing field with the stricture.  It’s not gone…yet…but I feel like I’m on the winning side and peace is nearing.

Work life balance

Since my last dilation (Oct 10th), I have been able to gain a few pounds (YAY!).  Yesterday morning, I woke up and stepped on the scale.  Flashing zeros….Flashing zeros…..108.0lbs.  I stepped off. Rubbed my eyes.  Tried again, flashing zeros…flashing zeros…108lbs.  I then rotated the scale to make sure that it wasn’t the floor throwing it off and again 108lbs.  It has happened. I’m now closer to 110 lbs than 100lbs.  It’s possible it’s water weight. But you know what, I’ll take it!

Once I felt well enough to work, I have always felt a need to work more.  I tried to do this as fast as I could during September-October which lead to weight loss and cutting back hours.  Mentally, I felt like I could do it.  Physically, I wasn’t ready and my body let me know.  Now that I am gaining weight gain, I feel an even greater need to work more.  However, I have also not returned to many of my physical activities that I enjoyed before surgery.  So this lead me to a big debate around work/life balance and needed to consult a few of my co-workers and family for advice.

My one co-worker asked me, “Why do you feel you have a need to return to work fully so fast?”.  Which really got me thinking.  Why?  I have always been career oriented.  Brandon once asked me, “If someone asked you who you are and what you like to do, what would you say?”  I replied, “I am a physiotherapist and I like…..physiotherapy?”  We realized at this point that I need to develop more hobbies (but that’s a whole post in itself).  Being a physiotherapist is part of my self actualization and I think this is why I felt so good returning to work back in September.  This deals with the return to work question.  But what about going back fully?  After much thinking, I believe it all boils down to finances.  Due to my reduced hours, I no longer am able to contribute as much as I was able to pre-surgery.  Brandon does not care about this but for some reason I feel a cloud looming around me about this issue.  I did not realize this before but contributing to our expenses was very important to me.

Now that I feel like I’m on the winning side of the weight gain curve, I have been given some choices,  “Where to expend your calories…at work or at the gym?”  I have spent the past week and a half debating about increasing hours at work or returning to the gym.  Yesterday, I filled out all the fields online to re-activate my gym membership and hovered my mouse over the “accept” button for at least five minutes.  Is this the correct choice?   Am I ready to go back? There is no refund.

Click. Accept. Thank you an email confirmation will be sent to you.

After submitting my registration form, I immediately felt excited to return to the gym.  I will start on Dec 1st.   Have I made the correct choice? Yes, I think so.  It’s all part of the work-life balance scale.  It’s also easier to remove the gym vs. cut back hours at work.  I am confident that returning to the gym will bring increased physical fitness, improved mental state, and energy levels.  In addition, my body is in horrendous shape (I did three sets of ten squats last week and was sore for two days).  This will provide me with a formal exercise program to rehabilitate myself fully as my home exercise attempts have been not so successful.  I am confident that with this will come increased endurance, reduced risk for work injury, and an ability to consider additional hours at work.

So now the next step – find my gym clothing and make sure it still fits!

 

 

 

 

Whooaaa We’re halfway there – 6 Month post op

It only seems fitting to be blogging today.  I wanted to be sure I blogged on the 6th month anniversary of living without a stomach.  It’s been a whirlwind of an adventure mentally and physically.  Even though it has been only six months post op, it really has been over a year’s journey and I wanted to recap for some nostalgia.  I have done a lot of growth over the past year and I continue to learn more about myself as I continue to recover.

I also wanted to recap for those new joiners to my blog (thanks again for following!).  Reading back through some of my older posts, I was reminded about how stressful it was between Oct 23rd, 2013 – May 23rd, 2014.  I like to move forward and not backwards so I had forgotten about how stressed I felt.  For those who are at risk or know that they are CDH1 positive – this may also help for as timeline if you are reading through my past blog entries.  You’re not alone.  I didn’t realize there were over 80!!

Oct 23rd, 2013 – The day after my 29th birthday,  Brandon and I met with the genetic counsellor in Toronto to discuss being tested for the CDH1 genetic mutation.  This decision was not an easy one but in my mind, it was necessary.   This is a whole blog post in itself and I plan to write about making the choice another day.

December 6, 2013 – News was delivered from my genetic counsellor to myself as well as my husband and parents that I tested positive for the CDH1 genetic mutation.  A moment that has been engraved in my mind forever.

December 17, 2013 – First Endoscopy + routine biopsy performed by a gastroenterologist locally.  First time explaining CDH1 to medical professionals.  A surreal experience given that I have been healthy my entire life.

Jan 8, 2014 – Meeting with gastroenterologist to discuss results of recent biopsy. Negative.  Discussed doing additional biopsies given the recent research.  Gastroenterologist decides it is worth doing a repeat endoscopy + biopsy.

Jan 14, 2014 – Repeat endoscopy + biopsy performed locally.

Feb 5, 2014 – Embraced the snow storm and had the results of my endoscopy delivered. Signet ring cells found.  Oddly feeling very relieved.  Consultation set up with the gastroenterologist in Toronto who did my mom’s surgery.

Feb 12, 2014 – Meeting with the surgeon who performed my surgery and my mom’s.  Filled out the paperwork to be scheduled for surgery.  Got a CT scan instantly to ensure I was clear to go to Japan.  Amazed with the medical system in T.O.

Feb 26, 2014 – Met with a fertility clinic to discuss CDH1 and possible invitro fertilization.  A tricky topic!

March 19, 2014 – Pre-op appointment so I’d be ready to go into surgery if something opened up sooner than May 14th (1st surgical date).

April 12 – April 28, 2014 – Awaiting surgical date as my original date had to be moved.  Stressful!

May 23, 2014 – Surgery!  Goodbye stomach.  See ya never.

May 23 – June 3rd, 2014 – Recovery in the hospital.  Hospital food never tasted so good.

July 2, 2014 – First follow up post surgery – Lymph nodes negative. Officially Cancer free!! YAY! Discussed eating issues.  Upper GI X-ray booked.

July 8, 2014 – Stricture discovered.  It all wasn’t in my mind.  Referral made to have dilations at another hospital in Toronto.

July 16, 2014 – Follow up with gastroenterologist.  Weight continues to plummet.

July 17, 2014 – First dilation.  I can eat again!!!

July 30, 2014 – Follow up with gastroenterologist.  Cleared for lifting.  Glorious!

Aug 5, 2014 – 2nd dilation.  I can eat even better.

Sept 3, 2014 – Return to work! Yesssss!

Sept 24, 2014 – Follow up with gastroenterolgist.

October 10, 2014 – 3rd dilation.  Right in time for Thanksgiving.

Which brings us to now.

Earlier this week I had another follow up with my surgeon in Toronto.  I have been feeling really good over the past two weeks and felt this may be the last appointment with her.  After updating the team about my improvements since my last dilation, the team decided that I wouldn’t need to come back for follow up for………6 months! Yes!  Less doctor appointments means closer to normalcy.

The interesting thing about this appointment was that mom and I happened to meet another family with the CDH1 genetic mutation in the waiting room.  It was interesting to meet another family with this since there are approximately 350 families affected with the gene worldwide (and more being identified).  It makes sense that that would be the place to meet someone though since this surgeon performs many prophylactic (arguably curative) gastrectomies for people with the CDH1 genetic mutation.

I don’t want to jinx anything, but I have been able to gain two pounds since my last dilation.  It’s been a while since I’ve had to spit up anything and swallowing feels almost like it used to before surgery.  I now weigh 106.7lbs.  I am aiming for 110lbs.

This Wednesday I am going for my 4th, and hopefully, final dilation.  My surgeon’s office recommended that I also have a colonoscopy to screen for colon cancer since I’m going to be on the table.  I’m not sure if this can be arranged that fast since I have had a hard enough time getting scheduled for my dilations.  I’m also concerned about the prep for the colonoscopy because you have to flush out your system the day before the procedure.  That for sure will lead to weight loss.  Either way, I’m in no rush for that procedure (honestly, I’m not sure who would be).  We will see what happens.

Other than that, I can now start seeing the light at the end of the tunnel.  Once my stricture has been fully dilated, I will no longer need to worry about those appointments and hopefully will just need to follow up with my family MD to monitor my nutrition.  I’m six months post op – I’m halfway there.  I’m thankful to wake up and celebrate each day.

Me in March 2014 pre-surgery (on the left) and Me Nov 2014 (6 months post op)

March 2014 pre-surgery (on the left) and Nov 2014 (6 months post op)