Saturday, October 13, 2012

Hi Everyone

It ia a beautiful time of year in Northern Arizona.

I was saw today Argo and really enjoyed it.

One of my neighbors stopped by and mowed my lawn.

My mammogram and MRI results came back clean.

I'm going canyoneering next weekend for the first time since my diagnosis (not including the class we took).

We have had some beautiful sunsets.

I've been able to get off work in time to see some of them.

I've added two new blogs to my list on the left of this page - The Tamoxifen Diaries and Darn Good Lemonade.  Check them out.

My new dog, Chaco, and my old dog, Daisy, are now best friends.

It is good to be alive!

Now if only the Tigers would win the ALCS..............

Tuesday, September 18, 2012

Find Me On Facebook

I've started a public page on Facebook.  Search for me as "Wanderlinda - Life After Breast Cancer". Feel free to "like" my page and please feel free to post items on it and join in on any conversations.

Wednesday, August 29, 2012

Finally A Trip to the Doctor and Only Good News!

I went to see my cardiologist earlier this week to get the results of the tests I had a couple of weeks ago.  He says that he saw no sign of heart damage from chemo, no signs of blockage, and that my heart murmur is not caused by anything to worry about. 

He said that I do not need to come back for any follow up and that my heart can handle any type of physical activity I want to do.  He told me to handle my risks just like anyone else and that I should bring down my cholesterol and lose weight.

It was a great relief and I hadn't realized how much I was worried about it.  I think I just got used to getting bad news on my health.  At least I know part of me is running well!

Saturday, August 18, 2012

Wednesday, August 15, 2012

Mayo Clinic Visit Part 3

I decided to get a consultation at the Scottsdale Mayo Clinic after I wasn't really getting answers from my oncologist about some of the side effects I was having and when he didn't know about a couple of recent studies I read about online.  Plus, I have not gotten a second opinion on anything up to this point.  I wanted to know that what we have already done for treatment and what we are doing now were/are the best treatments/tests that can be done.

Getting the appointment went pretty easily.  I had to fill out a couple of questionnaires online and talk to someone in their front office before getting a date and time.  Once I got the appointment I had to get all of my medical records sent since my first mammogram.  It took a lot of phone calls but everything eventually got sent to Scottsdale.  I have also learned my lesson with the insurance company so I worked with them to make sure the visit was covered.

Scottsdale is around a four hour drive from here so I took a day off of work and traveled down the night before my morning appointment.  There is a nice hotel right next door to the clinic and I got in right before 9pm and was able to get a last minute dinner.  I was surprised how nervous I was but yet excited.  My appointment was at 9:30 but I went over early to scout out where I needed to go and to get some breakfast if I had time.  The facilities there are beautiful and everyone was very friendly.  Heck, they even had underground parking so I was out of the hot Arizona sun and someone playing a grand piano in the lobby. 

The oncologist I met with talked to me more in one hour than my current oncologist has in four years.  It was great to have someone explain things to me and answer my questions directly and happily.  I took pages and pages of notes.

One thing she told me that gave me some peace of mind, is that she would have positively had me complete chemo.  She would not have even ordered the oncotype dx testing.  With my age and the size of the tumor, she said that I had to have chemo.  I still have nightmares about my time while on chemo and it was nice to have someone else agree that it had to be done.

I asked about the problems I have had with my legs and feet.  She was able to map out places where I have little or no feeling.  She said that it was neuropathy from chemo and that most people get gradually each year and that I was unusual for both the severity and the length of time I've had my problems.  If it was going to get better, I should be better by now.  She suggested that I try taking Vitamin B6 at 100mg per day to see if it helps.  It won't get better right away but it might in a few months.  She did say I could take Neurotin (sp?) but that it should be as a last result, like if I end up in a wheelchair, because of the negative side effects of it.

She said that she used to have everyone in my situation and on Letrozole get the Zometa infusions I am having every six months.  New studies are showing mixed results though and that if I wanted to stop one thing that we are currently doing, that would be the one.  She suggested getting bone density testing instead and then continue to test each year to keep an eye on it. 

She said that I was at an odd age at my diagnosis and most women are either younger or older when they get breast cancer.  It put me in a strange spot where I could either be treated as a younger or older patient.  Most women in their 30s or younger get genetic testing.  Since my tumor was so big she said that it probably started growing in my mid to early 30s and I could have genetic testing.  She told me to maybe see if my insurance company would cover it and then decide.  I guess it costs around $3,000.  The pros she said is that I would either know if I was genetically inclined to get it or not and if so, I would have my mammograms or MRI tests every six months so we could catch it quickly when it comes back.  Plus, my sisters and niece would know to keep up with their testing.  On a side note, her assistant told me that there is a group of Jewish descent from Eastern Europe/Russia that carry a breast cancer gene.  We believe that our ancestors on my mother's father's side of the family were Russian Jews.

We discussed my big weight gain during chemo.  She said that she sees it a lot with the different drugs patients are given these days.  She said since I am now taking Letrozole and after my hysterectomy it will be extremely hard, but I need to lose weight to lower my chances of recurrence.  She noted that right now I could eat five pretzels a day and still gain weight.  She wasn't too positive on my ability to do it but said that I must. Anything I can do to even lose a little will go a long way.

She said I should drink less than four alcoholic drinks a week and was happy to hear that I am taking an aspirin a day for my heart.  She said that while there is not a lot of study on it since there isn't money to be made, there are signs that taking aspirin could really lower breast cancer recurrence risks.  She also suggested taking an omega 3 fatty acid supplement or flax seed daily for my heart not to lower my chances or recurrence.

She said also that there is a big study going on right now studying if Vitamin D also helps lower breast cancer risk and was pleased that I am taking large weekly doses right now.  She agreed that it will also help with the problems I am having with my hands as I raise my Vitamin D levels in my blood.

I asked about the six more years my oncologist wants me to take Letrozole.  She said that the jury is out on how long to take it.  She said with my young age and size of the tumor that the ten years total of tamoxifin / letrozole may be the way to go.  She said that I should come back to see her in the fall of 2013, which will be the five year mark, to see what the studies are saying.

As far as what testing I should have, she said I should visit my oncologist every six months, unless I have unexplained pain and then I should go in if it lasts more than a couple of weeks.  And then a mammogram every year. 

So, other than the Zometa infusions, she thought we are doing exactly what we should be at this stage.  I am so happy that I made the trip down to the Mayo Clinic and have started to take my health care into my own hands.  I take my Letrozole, aspirin, and Vitamin B6 pills every day and my Vitamin D pill once a week.  I'm starting to walk every night and am trying to lose weight. I had a echocardiogram and stress test this past Monday.  I get the results in a couple of weeks.  Hopefully they come back good and I can relax for a little bit. 

Sunday, August 12, 2012

Blood Work Part 2

So, back in May I decided to take my oncologist's advice and go to our local clinic and see what they thought about my side effects and to have my cholesterol checked since I had read that Letrozole can cause a big increase. 

The doctor and I discussed my feet/legs/hands.  She decided that we would do all sorts of blood tests and check for diabetes, thyroid problems, cholesterol, etc. etc. etc.  It was on Memorial Day so they could not draw the blood that day so I came back the next day.  Once again it took three sticks before they could get a needle in and they ended up using that big blue vein (artery?) on the inside of my wrist.  It hurt like the dickens but they got the four big vials that we needed.

Called to get my results the next week and we went over all of the results.  The good news was that almost all of the tests came back great.  My LDL (bad) cholesterol came back high at 133 (should be 99 or lower) but my HDL (good) cholesterol was over 59 which is great.  My C-Reactive Protein reading shoes a  high risk for future cardiovascular event.  And then I had a severe vitamin D deficiency.  She suggested I come in and talk to the doctor.

I right away started an internet search on the vitamin D deficiency and right away found a 2009 study that says that women who had breast cancer and take Letrozole often have a vitamin D deficiency and that it can cause debilitating pain in the hands.  I printed the study and mentally cussed out my oncologist for not letting me know this when I explained the problems I was having.  It had gotten bad enough that I thought I would not be able to do my job in the near future and there was such an easy fix.  I took the printout to my appointment and the doctor I met with had found the same study.  It said that 16 weeks of taking 50,000 IUs of vitamin D would get levels up into the 60s and that most women then no longer had problems with their hands.  I am 12 weeks into take the pills and feel so much better.

As far as the other results, the lady I met with actually has a background as a cardiologist physicians assistant and when she listened to my heart, she heard the heart murmur I have always had.  She recommended that with the murmur and the results above that I should see a cardiologist for an echo cardiogram to see if chemo caused any heart damage or if there are any other problems from Letrozole.  I had my first visit a month or so ago and he could also hear the murmur but he said that it was more of an extra sound instead of a murmur, he did an EKG on that visit and said that it looked good but with heart disease history in my family, history of chemo, the murmur, the high C-reactive Protein reading, and the Letrozole; he suggested I come back for a echo cardiogram and a stress test.  Work, of course, has been super busy since then so I am finally getting in for those tests tomorrow.  I won't hear the results for a couple of weeks but we will at least get a good feel for how my cardiovascular system is working right now and will have a baseline for the future. 

I am very proud of myself for finally taking my health into my own hands.  It has been too easy to just show up when and where they tell me, never ask questions, never argue, and always assume that they are doing everything they can.  Tomorrow night, I let you know how the cardiologist visit goes and will detail what I learned from my visit to the Scottsdale Mayo Clinic.

Saturday, August 11, 2012

2012 Medical News Part 1

OK, I admit, I've not done a very good job at keeping up with my medical news this year on my blog.  I'll try to start at the beginning and get caught up in the next few days to what's currently happening.

I still have numbness and pain in my feet and legs (concrete feet) plus my hands get sore and weak.  When I first stand up from sitting for even a little bit I limp and stumble until I get some feeling back in my feet.  My hands get hard to close and ache after work and in the mornings.  I am also worrying about some of the long term side effects of Letrozole that I have read about.  I tried to bring some of this up with my oncologist but he either just kind of blows my questions off and says that I should talk to my primary care physician about it all and that he wants me to stay on Letrozole for at least seven more years.  Did I mention before that when I told him how much pain I was in after the Zometa infusion he responded, 'You know I had a Zometa infusion recently and I was in a ton of pain, I just thought you women were a bunch of whiners but it really did hurt.'  I realized then that he wasn't going to take my concerns and questions seriously.  It was at that point that I decided to take my health into my own hands.  While I will still see him for my cancer care, I got an appointment o talk to someone at the local clinic here and started applying to get an appointment to discuss my past and future treatment at the Mayo Clinic in Scottsdale. 

My oncologist did sign me up for my yearly mammogram and this year he added a breast MRI.  I was able to do both on the same day and it all took a couple of hours.  The mammogram was as fun as always and the results came back fine.  The MRI was worse than even the PET scan from a few years ago.  I found out that they take a normal MRI and then pump some sort of liquid into you through an IV to see how it flows through.  As usual, I don't really know what they did or used or were looking for.  You would think after all of this I would take more time to write down the things they tell me or ask more questions.  I do know that she had a horrible time getting the IV needle into me and ended up using that big blue vein (artery?) on the inside of my wrist.  I think she tried to stick me three times.  I was worried I would be sent away to some back another day when I was more hydrated but she got it in the end.  I always tell anyone trying to stick me that after chemo there is no way they can hurt me but she did.  The inside of the wrist is sensitive. 

Once the needle was in I was put face down on a very uncomfortable table and with my hands out in front of me was slid into the MRI machine.  They had a mirror that I could look into that showed the view out the other end.  It helped with the claustrophobia.  She gave me ear phones and asked if I would like music to help me lay still for the 20 minutes or so I would be in there.  I said I didn't care but she insisted, saying that she had Pandora.  OK - how about bluegrass?  I was thinking some Alison Krauss would be great.  She said I should ignore the loud noises, try not to breathe too much, and that after fifteen minutes they would shoot the dye (?) into me and that it would only last five minutes from there.  She put a panic button in my left hand and left the room.  That position and table was terribly uncomfortable and I started hyperventilating almost immediately.  I couldn't for the life of me get enough air so I was taking all of these small breaths (trying not to move) and panicking more and more every second.  I was looking forward to the music starting.  I should have been more specific though, when it did start it was the old timey fast paced banjo bluegrass.  Don't get me wrong, good stuff when it's live and in a barn but was enough to almost to get me to push the button.  I didn't though and tried to go to my happy place (tropical island Greg and I visited on our last cruise) and enjoyed a margarita there until the whole thing was over.  The result of this test came back good also so it was all worth it in the end.  I think the more time there is between medical experiences these days, the more whimpy I get about it all.  Next time I'll go back and read my blog about The Biopsy and nothing will seem as bad.

My next blog will be about my visit to the local clinic and what I found out from some blood tests they requested.  After that I'll fill you in on all the stuff I learned at my appointment at the Mayo Clinic.

Monday, August 6, 2012

Expanding My Family

Introducing Chaco, a five month old Golden Retriever/Australian Shepherd rescue puppy.  He is already keeping me on my toes and destroying the house.  I swore I would never raise another puppy but look at that face.  How could I say no?

Daisy shows Chaco the Grand Canyon for the first time.

Saturday, July 21, 2012

Sorry, It Has Been Awhile and I Missed My Yearly Cancerversary Blog

I let the four year anniversary of my cancer diagnosis go right by and didn't even think about writing my annual "thoughts on it all" blog.  I had my sister's family visiting and the house was filled with giggles and love.  I didn't even take a quick getaway trip by myself to reflect.  The further I get from that time the more the memories fade and the fear that was so pervasive back then lessens.  I do think often of those that helped me back then that are no longer with us and I follow the blogs of some that aren't going to win their fight.  Every day I am appreciative that I am still cancer free but I have to admit I let the little things get to me more often than just last year.  Maybe that is a good thing?  It means that my life is back to normal?  I hope not, one of the great things that came out of my cancer fight is learning first hand how no matter how bad every day life gets, it is still all good as long as my, my family's, and my friend's health is good.  Every day is a blessing if we are all well.  I do still have some chemo side effect issues and some problems with letrozole but I'll detail those in a different blog.  I've had a bunch of blood tests run, visited the Mayo Clinic, and an seeing a cardiologist but all tests are coming back cancer free!  Two friends of mine had their own breast cancer fights this past year.  They are doing well.  Life continues on and we are at another presidential election, I missed the last one while being in chemo treatment and am looking forward to voting this time around.  I hope to add another dog to the family soon and have pictures from a couple of vacations to post on here.  Here's to a year of no "you have cancer" phone calls! 

Tuesday, June 5, 2012

Cancer Is Not A Battle We Win or Lose

This was posted by my favorite blogger "breast cancer? but doctor...I hate pink"

Amazing words from Dr Erica D. Bernstein that mean so much today.

"Cancer is not a battle that we win or lose. It is not our fault or a sign of weakness. We are not responsible for our cancer outcomes. The crapshoot of cancer and recurrence can NOT be controlled. Celebrate yourself for each time you, despite all the trauma of cancer, treatment, and the mindf*** of "survivorship", choose to love, live, lust, laugh... We are not a success story based on our cancer progression or not. We succeed when we are courageous enough to keep walking forward even with missing parts, severe pain, addled brains, and broken hearts."

Sunday, May 27, 2012

Struggling with My New Normal

I keep hoping I'll get back to my old physical self when I could hike forever and not slow down. Where I was only limited by my fear of heights on what canyons I could go down. Six or seven hours of sleep was more than sufficient and I wasn't in constant pain. I'm not sure if it will ever happen now. I struggle with not getting too down on myself. I still have so much pain that it is so hard to do the work needed to get closer to what I was. I am trying though and not long ago we took a canyoneering class in Utah. I wanted to see if I was even capable of doing rappelling again. It was a GREAT day and it did give me hope that I will be able to once again travel down the canyons I love. Maybe not as well or as long or as far as I used to but my joy will be the same. Here are a few pictures from our class.
 Nice having my old helmet on again
 I can still set up an anchor
 Hoping my hands are strong enough for this

It was a beautiful day!  Life is good
Love this picture! I look happy
This is fun!
I'm still smiling
Heading back to the car.  Sore, excited, happy, and tired.  Maybe I can do this!

Sunday, May 13, 2012

Life Traveler

Monday, March 19, 2012

Mule Trip to Phantom Ranch

Last weekend I was lucky enough to take a mule trip to Phantom Ranch with my parents.  It was one of the hardest things I have ever done but also one of my favorite things.  I will remember it forever.  We stayed in one of the cabins for two nights and rode out again.  We had beautiful weather and a wonderful time.
 Getting ready
 Mom meets Marcy
 It was a beautiful morning

 Still some ice and snow on the trail in the shady areas
There were more switchbacks on the way down and back than we could count
A well deserved break at Indian Garden
Dad and Mona
Chalula and I
Back in the saddle
Down to the Colorado River!
Crossing the Black Bridge
The rest of our mule train
We made it!
Our home for two nights
Chalula enjoying her day off
The bottom of the Grand Canyon is beautiful
Silver Bridge
Bright Angel Creek
Quiet morning at the Ranch
 Hiking on the North Kaibab Trail
More of the North Kaibab Trail
Starting out to the rim
Dad and Mona on Black Bridge
 Our mule train
 Can't beat the views
Best picture of the whole trip
More unbeatable views
We came up that?
Another view back the way we came. 

Camera battery died at this point but other than a few sore muscles, we made it out just great.  Happy Birthday Mom and Dad!  Can't wait until we do a Colorado River trip for your 80th!