Being Heard

One of my frustrations with dealing with physicians and care providers with limited time in their schedules is wondering if I have been truly 'heard'. As a care provider myself it has been a good lesson for me - I need to listen to understand - not listen to respond. 

When I went to see my GP regarding my ankle/foot on September 22nd I had a preconceived idea of how my appointment would go. In my mind, I was getting through the weeks leading to the appointment and then I thought the appointment was going to effect a change. 

That is not what transpired. When I mentioned to
my GP that the injury was Workman's Compensation as it had occurred at the work site she became flustered and needed to go get help to get to the right screen on the computer to enter her report. When patients are allotted 10 or 15 minute time slots taking 5 of those minutes to get the right computer field up cuts into that precious time in a big way. Once she was set up properly there was
little time to review what had really happened with the injury and the radiology reports. As soon as she heard about the first rollover of the ankle outwards she said she knew exactly what happened and told me she could tell me what my symptoms were. What she did not/would not hear at that point was the other part of the injury or what had transpired since, the amount of time since the injury or the
amount of physio I had already had. She
immediately jumped to more physio, suggesting that my physio had been incomplete. I tried to make my arguments but I did not feel heard. 

I left the appointment quite discouraged, with another physio prescription in my hand. 

I did make a physio appointment but it took a week
to get in.
What a difference! There, I felt very heard and the physio was surprised and concerned that I was still having problems. She listened and then did her examination. When I gave her the prescription for the physio the GP wanted she said 'this is not right'! She validated what I had already researched on my
own as to what could be the reason I am still having 

trouble - I thanked her for listening and for hearing me. 

As I mentioned, it was a good lesson for me as I go about my daily life. 

That brings me to a song that I have found to be a real blessing the past few months, I listen to it
regularly as I begin my day. The other thing I am
learning more and more to do is to give each day to the Lord and ask That I would minister Him to all I come in contact with - through every word and every action. It helps me to take the focus off of myself no matter what the day ahead holds. I hope that it might bless those that are reading also.


http://youtu.be/TObr52tHgZ0

I will make this day my prayer by David Kaufman

Here are the words - 

I Will Make This Day My Prayer

I will make this day my prayer
I will give you everything that I am and do today
I will give you all my cares, all my joys and 
sufferings
I will make this day my prayer

And when I work may my work usher in your reign
And as I go may I go with you
And when I speak may my lips sing your praise again

May my words be light and truth
And when I see my friends may they see you in me
And may I see your face in them
And may our conversation lead us to the freedom
That your presence beckons in

And when I ask forgiveness may my heart be true
And may I offer forgiveness too
And when we reconcile may we be one in you
May forgiveness make our hearts new

Take care, everyone 

Testing

Hi everyone
I thought this title would be an appropriate one to see if anyone is still looking to see if I will ever post again and also to provide an update, especially in regards to the cardiac and genetic testing progress.

Life is very busy and I think I have mentioned in the past that all the documentation that is required for work often leaves me fairly brain dead by the time I go to try to put two words together and make any sense on here. I do find that I miss blogging - it really helped with keeping positive and was very therapeutic in so many ways as I went through my cancer treatments.

A quick recap on the cardiac testing - there was a decrease in my left ventricular function from prior to treatment but it was still in the very low normal range. With my low blood pressure the physician did not want to put me on a beta blocker and I agreed - I do not like taking medicine but it was good to know that some of the blame for fatigue levels could be attributed to this.

Rod and I had a wonderful vacation to San Jose del Cabo, Mexico in mid-May - I think I may officially have the travel bug now!We used my rest strategy when planning our activities and that worked very well. We would spend a quiet day at the resort every second day and some sight seeing activities on the other days. We had a bit if an adventure on the way home at the Houston airport - who knew that 1 1/2 hours between flights might be cutting it very close - we just made our connecting flight home.

In late June I was trying to hurry too quickly between meetings that were on opposite sides of the city and ended up falling, turning my left ankle both inwards and out wards (eversion and inversion). I had it looked at and was told there were torn ligaments laterally and an avulsion fracture on the inside ankle. I had to look up avulsion fracture it had been so long so I will share what I learned. It means that the ligament tore off the bone but in doing so it took a piece of the bone with it.

Physio and the typical RICE protocol has not helped so I had more testing late August that included another set of x-rays, an ultrasound of the foot and a complete body bone scan. The ultrasound and bone scan involved extra pictures and the radiologist being consulted. They still aren't sure about a few things so an MRI was booked but I don't know if there was a misunderstanding or if it really takes that long to have one here - the date I was given by the clerk who booked it was February 5th, 2015 with a time of 11 p..m. One of my on-line friends cheerfully suggested that it will either be fine by then or my foot will have fallen off from gangrene - let's hope for the former! I did make an appointment with my own GP who is a sports medicine specialist for September 22nd so hopefully she can get things back on track for me.

The next update is on the genetics testing. I had an appointment in August to discuss BRCA 1 and 2 results which were negative, as was suspected. With that ruled out we could proceed to looking at Cowden's and Lynch as possibilities. I saw the geneticist on Wednesday of this week. I had a stereotype of a geneticist and she did not fit it, I will have to watch those stereotypes. She was a very young, personable and attractive doctor.  After reviewing my family history and doing a physical exam she is going to go ahead with asking the province to approve testing for Cowden's. My dad's and aunts tumors are being tested for Lynch syndrome and if that is positive I would be tested for that also. So definite progress in that area.

Lastly, I met with the plastic surgeon late May regarding reconstruction. I would need flap reconstruction and if I decided due to genetic test results to have prophylactic mastectomy on the left side I was told I did not have enough abdominal fat to use for both sides so I would need an implant on the left side. Who would ever have thought I would be disappointed to be told I did not have enough abdominal fat - life is strange sometimes! That surgery, should I go ahead with it probably wouldn't be until early New Year.

Take care everyone!

It's a wonderful life

Back again, finally. Lots has happened since my return to work following vacation. The three full days, two half days a week have been a real challenge for me in regards to fatigue and that is with taking a personal leave day the first week back - I have about 26 hours of personal leave due me that I will lose if I don't take it by the end of the month. The other challenge is finding time in my schedule to take that time off.

Jordan and Kenny had birthdays last weekend, they are 10 years and 2 days apart. We had a wonderful celebration on Sunday evening complete with prime rib roast, yorkshire pudding, mashed potatoes, gravy, roasted veggies and salad then finished off with cake and ice cream. It was all very tasty and Paisley provided wonderful entertainment showing us all her newly acquired skills, the most recent being clapping. She loves peek-a-boo and I was a very willing participant in the game so I could hear her delighted laughter over and over again.

Tuesday afternoon and all day Wednesday this week found me and my co-worker giving back to back 1 1/2 hour workshops. They went very well and that was very encouraging but I could barely think or talk straight by end of day Wednesday, making up some new words when the real words weren't coming to me.

Thursday morning I had my cardiology appointment. The doctor was very nice and, as a result of my appointment, I am now scheduled for another series of appointments on April 1st. The day starts with fasting bloodwork, the morning also includes an echocardiogram. After that I am to have a light lunch, then a treadmill stress test followed up with another appointment with the doctor.

Yesterday I was able to work from home in the morning. Nice to have a chance to catch up a little. I took the opportunity for a two hour nap late afternoon then got ready to go and meet my support group ladies for an evening of bowling and visiting. Wonderful to see them all again, what an incredible bond we all developed over the three months of Friday mornings we spent together. There was laughter and tears during those sessions - both very healing. I surprised myself by having the highest bowling score for both games, maybe the chemo or radiation or combination played a factor, something did - I have never been a good bowler in the past. Good being a relative term.

After bowling we went out for tea, we all had lots more visiting we wanted to get in. So glad I had the afternoon nap, by nine I was tired and slightly nauseated again, a sign that I needed to call it a day - but what a lovely day it was!

Rod and I have been finding out what it is like to be empty nesters this weekend. Kenny is off to Montana so we have had the house to ourselves. We have a trip booked to Mexico in May so I bit the bullet and went shopping for swimwear this morning. I was able to find two suits that work - one is a tankini style and the other regular bathing suit. I was also talked into a very cute black, lacy cover up which should help where the years and surgeries have taken their toll. All in all, I thought I did well - no screaming or crying in the dressing room and I even allowed myself lunch once I got home ;). Another nap this afternoon was followed by a lovely supper out with Rod. He has very generous customers who provide him with all sorts of perks - today's were gift cards that covered our meal. We are blessed!

Tomorrow we are having our Paisley fix for the week - Caleb, Leisha and Charlie are also allowed to come over ;) Following that the week ahead will fly by once again.

Take care, everyone! :)

In the Genes

Before I get back to work I thought I should also give an update on what is happening currently in regards to the genetic testing.

The results are not yet back from the BRCA 1 and 2 blood test that was done late last year; I am told it will take 6 - 9 months from the time it was drawn to get those results back.

In the meantime, the genetics counsellor is working on seeing if there is any tumor tissue that was saved from my father that could potentially be tested. She has also requested my mother's medical records, with particular interest in the ovarian cancer diagnosis and if any tumor tissue was saved from that.

She sent me a request for information form for my paternal aunt's executor to sign and return so they can also access her medical records. This request gave me the chance to connect with a cousin from that side of the family that I never really knew, he has a few years on me. I felt hesitant asking but the request was met with a phone call and immediate consent. We caught up a little on each other's lives and I explained the two syndromes that the genetics counsellor is particularly interested in following up on. I'll give brief explanations of both that were given to me by the genetics clinic.

Cowden's Syndrome - Cowden's Syndrome is an automsomal dominant, hereditary cancer syndrome. it belongs to a set of syndromes known as the PTEN hamartoma tumor syndromes. The cardinal features include multiple hamartomas (moles, etc) of the skin and mucosa, macrocephaly (enlarged head) and a high risk for benign and cancerous tumors of the breast, thyroid and endometrium. The risk for breast cancer in individuals with PTEN mutation is estimated to be in the range of 25 - 50% (I have read later statistics that put the risk as high as 80%). The lifetime risk for thyroid cancer is about 10% and the risk for endometrial cancer, although not well defined may approach 5 - 10%. Increased incidence of kidney cancer, skin (melanoma) and colon cancer have also been reported. PTEN gene mutations are found in the vast majority of individuals with Cowden's Syndrome, although mutations in other genes have been reported in a small number of patients who have features of Cowden's Syndrome but do not meet diagnostic criteria for Cowden's.

Lynch Syndrome - Lynch Syndrome is an automsomal dominant cancer predisposition syndrome which accounts for about 2 - 5% of all cases of colon cancer. Patients with Lynch syndrome have a 50 - 80% risk of developing colon cancer. Colon cancers in Lynch syndrome are more likely to occur in the proximal colon and are often diagnosed earlier than colon cancers in the general population (average age 45). Women with Lynch syndrome are also at risk of developing endometrial cancer (30 - 60% lifetime risk) and ovarian cancer (10 - 12% lifetime risk). There is a small increased risk for a variety of other cancers including stomach, small bowel, pancreas, urinary tract, biliary tract and brain. These risks may vary depending on family history and which gene is involved.

Four genes are currently known to be associated with Lynch syndrome. These genes play an important role in DNA mismatch repair. Inherited mutations in three of these genes, MLH1, MSH2 and MSH6 account for the majority of families with Lynch syndrome. Immunohistochemistry (IHC) and microsatellite instability studies (MSI) are tumor screening tests that can help identify patients who may have Lynch syndrome. Diagnosis of Lynch syndrome ultimately relies on genetic testing to identify a mutation in a mismatch repair gene.

Lots of medical terminology, eh?

If the BRCA1 and 2 testing comes back normal, then they will bring me back in to be examined and go through some testing with a medical geneticist. In the meantime they will attempt to get the records for my aunt, father and mother. If they are able to obtain tumor tissue from my father they will do the IHC and MSI testing for Lynch syndrome on it. In the meantime the clinic has sent a letter to all my physicians which documents their suspicions and what they are doing and the screening that they are recommending for now.
I also received a copy of the letter for my records.

As I said in an earlier post, nothing seems to happen quickly in the genetics world.

On a different note, we had the privilege of babysitting Paisley and Charlie last evening. Paisley is growing up so fast! She is a little charmer and has definitely got Rod and Kenny wrapped around her little finger. She is sitting, crawling, pulling herself up to standing and getting back down again and has also added waving and clapping to her repertoire. She says dada and Hi, mom is just an m sound so far but who knows by next week at the rate she is going. At one point in the evening I had Paisley sleeping in my arms in the chair and Charlie felt he should be getting equal time so he jumped up and tried to settle in also. This woke Paisley up so he had to settle for Rod's lap but the minute Paisley's parents took Paisley from my arms on their arrival home Charlie was up in my lap looking for some loving of his own. Older siblings! ;)

This evening I will make it an early evening in preparation for a busy work week ahead.

Take care everyone!

Week in Review

It felt good to add a post once again

.

Monday I had an appointment with my BCSCF physician followed by a visit with Norman. It was good to see him, he is doing so well! He arrived with his usual treat for me of a salted brownie but this time he added a wonderful lemon square that had a shortbread crust; he had tucked away another one in a box for Rod along with a brownie for Kenny. Popular man in our household this week! My voice was still mainly absent on Monday so I sat and listened while Norman talked, I bet that doesn’t happen for him often, it was a very enjoyable visit.

On Tuesday I decided that I needed to take it easy and see if I could help my body get rid of this cold that has been lingering; it was a nice quiet day.

Wednesday was an errand/shopping morning and I was very pleased with how well everything went; the route I had planned worked well and I was home for lunch with everything (and more) that I needed taken care of.

Yesterday was apparently national Chili Day (according to Facebook, anyway) so I made up a big crockpot full of chili first thing in the morning and then did a few other things before going over to the hospital to have the holter monitor applied. There were a few other people in the waiting area of the CV labs area when I arrived and the staff was at lunch; I was happy to have my iPad with me and access to the internet. When it was time for my appointment, they called me by my first name and took me back, without checking any of my demographic information with me to make sure that I was the right person – not good on their part.

The process of getting wired up was an easy one, first they used an alcohol swap to clean off the five areas that the leads would be placed; once those were dry they roughed up the skin a bit with an emery-like material followed by placing the monitor leads. Once placed, they connected the leads and then taped over the leads to secure them even more. The holter monitor itself was small, like a cell phone, much smaller than the ones I was familiar with earlier in my nursing days. The holter was placed in a protective cover and attached to some webbing that acted as a belt, the loose lead wires were all tucked up neatly and I was set.

The tech reviewed the diary that I was to keep with me. I was to go on with my normal daily activities; if I felt there was an ‘event’ i.e. arrhythmia; there was a button on the holter to push and I was to record the time on the diary along with checking off any symptoms I might have felt at the time it occurred. The only other instruction was that if I exercised I was to document the time and duration on the diary. 

As I left, I thought about walking down one of my favourite hallways at this hospital where they have different pictures and paintings by local artists for sale but talked myself out of it and headed home.

Murphy’s law – I didn’t have any episodes like the 45 minute arrhythmia that placed me on this path; I did my treadmill workout and recorded that; then had one little skipped beat once I went to bed, otherwise I think it was a fairly boring holter test. 

Here is a picture of the holter apparatus - my apologies for getting my finger in the way of the camera lens - 

This morning, I removed the holter as instructed at about 9:30 a.m. and placed everything along with my diary in a Ziploc bag, then drove over to the hospital and dropped it off to the bin they had instructed me to place it in. I once again had the urge to walk down the hallway where the paintings were but thought about my 15 minute parking and decided to leave. I made it to the front door and still thought I should go back and look at the paintings so I followed that urge and asked the Lord to show me if there was something there that I was supposed to see. Most of the hallway walls were being cleaned today so the pictures had been taken down and some were just in the process of being re-hung by a couple of volunteers. There was an area further down that always had pictures also so I headed to that area and once again asked the Lord to show me what I was supposed to see. There it was! The perfect picture for Keiran whose birthday is coming up at the end of April. The picture goes well with the theme I have going for his gift so I quickly picked up the picture and walked down the hall to the gift shop to pay for it. The volunteers beamed as I walked past them, very pleased at my purchase. So was I.

Tomorrow we have the pleasure of babysitting Paisley and Charlie.

So that is my week, including the Holter monitor which turned out really to be a non-event. Next week it will be back to work.

Take care, everyone!

Three Month Summary

I need to apologize for not posting anything since mid-November. It has been a busy time dealing with my mother's estate, trying to get back to my regular work schedule and Christmas thrown in for good measure.

Several people have inquired as to how I am doing and I know that they are genuinely interested. Sometimes when I am out and about and I get asked that question and I find it is easier just to say OK, rather than try to give too much explanation - when I have attempted a longer explanation including the words 'tired' or 'fatigue' I have gotten a quick comeback like 'you and me both' and so I am learning that OK is quite acceptable to most general inquiries but here I will give a little more detail.

I completed my support group at BCSCF on December 13th. A lovely bunch of ladies and we are keeping in contact, our first get together is a bowling party planned for late March. The day of December 13th we had a potluck lunch planned for after the group. I was hurrying around that morning getting a few things ready. Once I got into the room, my heart went into a very rapid rhythm, which has occurred at times in the past but is usually quickly converted by a cough or sometimes a cold drink of water. This time those tricks weren't working. I tried taking deep breaths and decided that I was in a good place as there were several doctors in the near vicinity so sat down and waited. At about 45 minutes into it, the rhythm returned to what my new normal seems to be - around 100 bpm. That was a welcome relief. I had an oncologist appointment scheduled for early New Year, so I decided to watch and wait and mention it at that appointment if I felt I needed to. Bring on Christmas! :)

Our place was a happening place for Christmas - I made a spreadsheet of meals which helped with grocery shopping. Justin, Leah and kids arrived on Monday the 23rd. We had a wonderful time with presents spilling far into the middle of the living room. It was magical to watch the kids prepare for Christmas Eve, including stocking, Santa's snack and Leah reading them 'The Night Before Christmas'. On Christmas morning Keiran's eyes were huge, he had received a rescue helicopter - his question to his mom as to how Santa could know exactly what he wanted was priceless! Paisley and parents as well as Charlie and Jordan and Celia all came over for Christmas Day. I won't go into tons of detail but the week included a visit to the Zoo for Zoolights and was completed by a Skating/Sledding Party at our local Park which I had booked for the day. It was a wonderful time and I know how truly blessed we are.

During this time I had the occasional heart rhythm irregularities, mostly when I was tired (everyday ;). I remained short of breath, something that hasn't changed since Herceptin treatment, so I did decide that I would mention it all to my oncologist at my January 8th appointment. Several of my chemo meds as well as the Herceptin can cause heart problems. My oncologist was lovely, she seemed pleased to see me but when I mentioned the arrhythmia she said 'that is concerning, you should have that checked out'. I think this is one of my biggest frustrations since ending treatment - knowing who to tell what - too many doctors. She asked if I would have the results of the mammogram I was having the next day cc'd to her and I agreed to do that, she also told me I could cut the Tamoxifen back to 10 mg/day to see if that would help with my joint stiffness and continued fatigue. She suggested that I should call the plastic surgeon I had been referred to for reconstruction as well and that was the end of my appointment.

The following day I had the mammogram. I was pleased that they took me directly to the higher magnification machine rather than having regular pictures and then going back several times. The tech was an experienced one who told me that she could not lie to people, which I found an interesting statement just out of the blue like that. I waited in the booth following the picture and she finally came back to me and told me that the radiologist said I could go. Then she said to me 'You would be wise to have a mastectomy for the other side but you didn't hear it from me'. I guess that was what she meant when she said she couldn't lie.

I put it behind me as I was busy at work - I am still not back to full time hours. For January I did one full day a week and three half days; February is two full days a week and two half days and the plan for March is three full days and two half days a week. I am currently taking two weeks of planned vacation days to the end of February - I do confess that I needed them and have been sick since just before leaving on vacation just over a week ago. That did not stop us from travelling last weekend to Cranbrook to celebrate Forrest's 2nd birthday. We had the privilege of staying with his other Grandma -wonderful pampering and hospitality!

I did remember to call the plastic surgeon's office to check on where I was in the waitlist lineup. I was quite surprised to hear that they did not have my referral, which had been sent to them June 12th. After a little phone time, they apologized and told me that if I would have the referral re-sent, they would place me on the waitlist as of June 12th. Now I know why my oncologist asked me to follow up!

I saw my BCSCF physician just after seeing the oncologist - she is the one who is keeping an eye on me regarding my return to work. She told me that she could also do follow up for me in other areas so I mentioned the heart arrhythmias only to get the same response from her as from my oncologist - that is concerning, you should get it checked out. Once more frustration as I had also told her that I was having some arrhythmias while in her office at the appointment. When I got home, I called for an appointment with my GP.

Just the day before my GP appointment, I received a phone call telling me that my oncologist wanted another mammogram in June and asking should they book it? I told them I was seeing my GP the next day so I would ask her to provide me with the requisition.

The day of the appointment it was wonderful to see my GP again. She had called me after my Mom's passing and she asked right away how everything was going in that regard. We talked and discussed the arrhythmia, shortness of breath and mammogram request. I am now scheduled for a holter monitor this week, an echocardiogram soon and I have a cardiology appointment booked for March. Gone are the days when the only reason I saw a Dr. was because I worked with them.

A couple of weeks ago I met with four other ladies from my online support group - one had come from Vancouver Island to visit and celebrate birthdays with family. We met for lunch on a work day. How wonderful to see them all and how incredible that it seems that they are all old and very dear friends. We have been through a lot together. They all seem to be doing very well and looking gorgeous along with it.

While I have been off this week I have been investigating Netflix a little and I have found a BBC series that I am loving. It is called 'Call the Mid-Wife' - it is based on the real life experiences of Jennifer Worth as documented in a three book series that she wrote once retired - the first book has the same title. The series takes place in the fifities. Of course, I had to download the books to my iPad as well as find out whether there were more shows other than the two seasons I have found on Netflix. I am pleased to report that there is a season three! I like to watch an episode while walking on the treadmill - it makes me feel somewhat righteous and gives me something to really look forward to. I should be able to space out the shows and the three books until season three is available in DVD in May.

That was a long summary - maybe not so much a summary as a novel. I hope that it helps bring people up to date. I find that when I am working it is difficult for me to write on the blog, I have lots of meetings and documentation required in my role and by the time the evening arrives I am tired and somewhat brain dead, it is hard to speak in sentences let alone write them. It will be interesting to see how the heart testing/follow-up turns out - it may be much ado about nothing. I find I can't compare my progress to others and I hope that anyone who is also going through or just through treatment and reading this doesn't think that my experience is the norm - it is only my experience. Most of the other people I am in contact with have regained their energy and they are moving on with their lives - as it should be.

Take care, everyone!