Mayo Clinic Cancer Symposium

 

THURSDAY, JANUARY 24, 2013

Mayo Clinic Cancer Symposium

2nd annual Mayo Clinic Symposium was held at the Marriott just a mile from the Phoenix Campus of Mayo Clinic. I attended again this year. Seeing my team of doctors was good, and ready-to-present information was good.

Dr. Northfelt, my med/oncologist, and myself

Some of the information I learned from the meetings was new to me, and some I already knew, but this is the reason I like to attend these symposiums so that I can learn all I can about my disease and what the new techniques or statistics are.

I learned that 200,000 new cases per year are reported of breast cancer, and the side effects of radiation are some that I am still dealing with. 

Lymphedema ✓

Lung inflammation

Fatigue ✓

Depression and anxiety ✓

Chest wall and or breast tenderness ✓

Breast swelling ✓

Skin burning

I only have five of those seven side effects, so I feel blessed to not have to deal with lung inflammation or burning skin anymore.

I learned that Radical mastectomies no longer are performed and have not been performed on breast cancer patients since the 1970s. They no longer perform these because the surgical procedures have been incredibly advanced since then. In a radical mastectomy, they used to have to take everything, including the bone surrounding the area, this left women with horrible battle scars. I had a Bi-lateral mastectomy. Both breasts were removed with all the surrounding tissue but not bone. This allows the surgeons to reconstruct more efficiently, with much better results.

When someone has a lumpectomy, they only have a 1.9% of recurrence. a single
mastectomy 1.1% recurrence, and only 0/3% of cancer patients who have a lump in one breast will get another in the other breast--in Dr. Kreymerman, "they are sisters, not twins."
BRCA 1 or 2 mutation only has a 30% 10-year recurrence in the other breast.
Only 25% of breast cancer diagnoses are women under 80.

Some great things to come are:
Cancer Vaccines
the studying of tumor clones
DCIS vaccines
Her2 antibodies

One bit of information I thought was interesting, 15% of patients who go through the cancer process will get Post Traumatic Stress Syndrome. As you have been through a war, the fear and anxiety of the return of cancer or having to continue to deal with the side effects of cancer treatments can literally put one's body into traumatic stress.

With recurrent patients, 45% of women have treatable anxiety and depression within the 1st 3 months of 2nd diagnosis. This is a mountain to climb but more terrain to walk through.

Did you know

55% stress over financial problems during treatment
46% cut back on food to be able to pay their bills
6% lose their homes and have to relocate
50% are not comfortable talking about any of these symptoms, even to their doctors
50% of patients do not share all of what they are feeling or their fears with caregivers or family
history of abuse, physical, mental, or sexual, will increase the levels of anxiety and will not be
shared with doctors
most women post-treatment will have low sexual desire and vaginal dryness and feel embarrassed about asking or talking about it with their doctor.

I was not surprised that most women do not want to share many intimate details with their doctors but was reassured knowing I am one of them and it is normal.

I am still waiting to hear back from Mayo about my ultrasound and low white cell count--no news to report.

Thankful

 

November 9, 2010

Thankful

In this month of Thanksgiving, I am thankful for these random things that come into my head ... haha

●cooler weather●green grass●blue skies●
●hugs from recker● emails from the DominicanReoublic●people who smile●
●mysti●clean fresh sheets●cute boots●open roads from Utah to arizona●
●december 18th●haleigh●my body●hair●cute notes left on my bedroom door●
●grapefruit●AJ'S refillable cup●choices●good VT'S●LOVE●
●Dr Kreymerman●Heather Lucas his assistant●
●medicne that works●pumpkin pie●ERIC●doorbell ditchers who leave yummy stuff●testimony●kayla and Jeremy●music●
●people that inspire me●Blake●good books●google searches● cinnamon smells●answered prayers●warm fuzzier●Kaitlyn and Brian●Haleigh
●laughter●mayo clinic●tamy scheurn●mickey mouse●organic apple slices●going the extra mile●christmas movies●THANKSGIVING●

try to think in 2 minutes or less of all the things you are thankful for.....I'm sure I forgot a few, and some of these are random huh?

Breast Cancer Pumpkin

 

SATURDAY, OCTOBER 30, 2010

Breast Cancer Pumpkin

This cute pumpkin was made by ANDREW HOM. He is 12 years old, and his mother was diagnosed with breast cancer at the beginning of this year. She contacted me through my blog and decided she wanted treatments at Mayo Clinic with the same doctors that I did. I think that children absorb more than we think they do. Andrew was not asked or coaxed to design his pumpkin this way; he just did it. I love it, Andrew, and thank you, Jodi, for emailing me the picture; I love that he used the bracelet I sent to you.

ANXIETY

THURSDAY, JULY 15, 2010

ANXIETY

WOW, it is 2:00 am, and I can't sleep. My mind is racing. I'm thinking about Blake, Haleigh in Utah, my next surgery, and seeing Doctor Kreymerman this next week. My house is quiet, but my ears are ringing so loud; I'm not sure what that's all about. I feel so tired but cannot sleep. I am exhausted.
Today I went out to the Mayo Scottsdale Campus to pick up my MLOA papers from Doctor Northfelt. I called him and asked if it was ok for me to return to work, he wrote me a letter to give to US AIRWAYS, if all goes as I want it to I will be returning to work on July 26, he is allowing me to return part-time until my subsequent surgery. Since June of last year, I have not been working, so back to training I will go. I have some anxiety about returning, but it may help me get past some of the thoughts and feelings I am dealing with right now. Anxiety is a word I never really had in my vocabulary a year ago. 

I now feel like it is a common question asked by each doctor I see "how are you dealing with your anxiety?" or "I hope you understand that all cancer patients end up with anxiety" " do we need to write you a prescription for your anxiety?" 

I think of all the symptoms I've been left with; I despise the anxiety the most; it comes on so suddenly. I try to not think about the VILLAIN, but it is next to impossible. I seriously put it to the test every day, saying, "ok, for one minute, right now, I am not going to think about it," looking at the clock, waiting, waiting, doing good 30 seconds pass... BOOM, there it is. I've tried relaxation CDs, praying, reading, and exercising nothing seems to help. I know it is normal, but I don't want to be a typical cancer patient. 

On my way to Mayo Clinic today, I could hardly breathe, and I had to pull over and say a prayer. Then just walking into the building made me sick to my stomach. I can smell the sickness in the air, especially when I get off the elevator on level three, where chemotherapy is distributed. I love and care for all the doctors and surgeons on my team. I have been treated with utmost respect and empathy by the nurses also.

Well, for now, I will not even try to understand it all. I'm off to bed, and I still need to read from Preach My Gospel tonight.

LABELS: ANXIETY, CANCER, JOURNALING 

Learning About Lymphedma

 

Yesterday I went to my physical therapy appointment, it was insightful, and I learned a lot about how The VILLAIN, patients can get lymphodema. I asked what time frame I was looking at to expect it to come. I was told that you can get it as long as you don't have lymph nodes. So even if you are free from The VILLAIN for 20 years, you can still get it, it actually has nothing to do with The VILLAIN, and there is not much you can do to prevent it, some people call it, some people don't. I can start my exercises as soon as I get the last drain out.
Today, I went to see my oncology surgeon Dr. Pockji for the last time; she took out my drain and said everything looked good as far as its cosmetics. This is interesting since I look at myself and think I look like an "experimental Frankenstein patient" Every time I look at myself in the mirror, I am sad and wonder if I will ever get used to it.
I told Dr. Pockji to thank you so much for the compassion she showed me at the hospital and her confidence and positive yet REAL attitude. I do much better with the straightforward truth, as she was great for my personality. I was sad to say goodbye to her, but I hope I don't need to see her again since she is The VILLAIN doctor.  

Home Is Where My Heart Is

 

I wanted so badly to journal while in the hospital, but I was pretty out of it and feared that I would write something that did not reflect my genuine emotions or feelings. Tuesday, we got to the Mayo checked in at 7:30 am, and I think I was back in my room by 10:00 or 10:30 pm. It was a long day for my husband and family as they waited to hear the news from Dr. Pockji and Dr. Kreymerman. They gave great news that the surgery was successful, and Dr. Pockji told Eric that they were 70%-80% sure the lymph nodes were clear. Eric was so excited when he was told that I would have to have chemo or hormonal therapy, NO RADIATION. 

Wednesday was a tough day for pain, the narcotics in my body were so foreign, and I didn't like how I felt at all by that night; I asked them to take me off the nerve block and all narcotics, I could not believe what a difference it made once those meds wore off.

Thursday started off being much better. I was now on less evasive drugs to control the pain and felt like a new person. I was able to walk around with the help of my husband, and slowly, they started to take out needles and, one at a time, be free from wires and tubes flowing into my body. Dr. Pockji came into my room with another surgeon, and she sat next to my bed and told me the Lymph nodes were positive for cancer. What? This cannot be; we were sure the worst part was over. It took me back to the day when I was 1st told The VILLAIN was in my breast; I was shocked and unable to respond.

I looked over at Eric and started to cry; Dr. Pockji was very compassionate as she told us that on Monday, I would return to surgery and have all the lymph nodes removed and a port put in the right side so that chemo would be easier for me. She explained that they were so sure they were clear but could see several nodes with positive results as they dissected them. She said that we would be aggressive with Chemo and Radiation. Later, when Dr. Kreymerman came in ( I love him ), he was so sweet and showed deep concern for me as he told me how sorry he was for the news. He also told me that there is a chance the procedure he did may not take because of the radiation; we will not know until later when we see how the radiation affects my breasts. This is a long process, and I will not be having radiation for another year; if it does not take after the radiation, I will require another surgery. I just wanted to go home; I asked Dr. Pockji if it was ok for me to go home for a couple of days and enjoy 2 days without the smells and sounds of the depressing hospital room. She agreed it would be a good idea. Eric and I decided the most important thing right now was to get a note to Blake in the MTC and let him know about the surgery on Monday and to let him know we are so proud of him and that we are feeling his constant spirit with us and that this is going to be OK, we have the best Dr's on my team. We will still fight it and win. I don't want anything negative to get back to Blake; he is enjoying the MTC and has been put in the Advanced Spanish class; the blessings he is receiving are overwhelming; I want him to continue to have a great experience and do the work he was called to do without worrying about what is going on at home. So we wrote him a letter, and I am sure the Lord will comfort him and bless him while he is away from us, bless his heart, I love him so much it must be difficult for him, but he would never admit it.

Friday, I came home. Holding Eric's hand and crying off and on the entire way. I know what this means. No one needs to tell me how hard it is going to be, but I have so much to fight for, and I have so much more in this life to do, so kicking and screaming the whole way, I will WIN this battle eventually.

Be Careful What You Wish For

Those who know me well know that I can be quite a jokester. Growing up, I never had any boobs, and I don't remember really wishing that I had them either; I think I was good with what I was given. Then after I had children..vavoom out came the sisters in full bloom, and I did not like it. I have often been asked if I had implants, or "what Dr. did your boob job" I am always taken back when I hear someone say that because just for the record, I DO NOT HAVE IMPLANTS...and I have said many times I wish I could get my boobs cut off. Of course, my husband was always in opposition to that idea, and we knew it was a joke, but now as I am being faced with what used to be a joke...becoming a reality, I'm scared. In just a few hours, most of my femininity will be taken from me, forever, never to return; the other part of it will be taken from me in another surgery a few months from now. My bishop and husband gave me a beautiful blessing tonight, and I appreciated every word of it. But the bottom line is that my breasts are being removed tomorrow, not by my choice, but The VILLAIN has decided it for me. I trust Dr. Pockji will be skillful that she knows what she is doing. that is not the problem. The problem is me; how do I fix this feeling inside me that a part of my womanhood is being taken from me? How will my husband look at me after? Can I even let him look at me? How long will it take for me to look at me?

I try not to be a vain woman, but I admit I want to look pretty to my husband. It's hard for me to go to bed tonight. When I wake up, I know it's time to go to the Mayo Clinic Hospital and face my VILLAIN. I'm not ready yet. I still have some housework to do, and some wedding plans to get done. Last night I had a terrible panic attack at my sister's house. The reality of all of this is becoming hard for me to handle. Tonight I read the 1st letter from my Son Blake; he is in the MTC preparing to serve in the Dominican Republic. He is studying so hard to learn the language that he only got 2 hours of sleep because he wanted to study. He sent me the most beautiful letter and testimony in Spanish; as I read his words, it calms me and makes me feel better about what I am going to do tomorrow; he has so much faith, and on these days when I am feeling like my well needs to be filled. The people in my ward fill it up with words of encouragement and gifts of Love, Blake's faith will fill the gaps where I need it, and I know for a fact the Lord will pick me up and carry me when I cannot do it myself. I pray tonight that the Lord will strengthen me tomorrow as I face this sudden and awful journey I am starting; I have always told my kids that it's not the start of the race that is important; it's the finish that is most important. 
And I plan on finishing this race in the first place.

LABELS: Breasts, Cancer, Dr. Pockji, Faith, Frenchie, Journaling, Mayo Clinic, The Villain, Elder Williams, The Villain

Be Careful What You Wish For

 

Just so you know, I have decided to name my cancer The Villain.

Those who know me well know that I can be quite a jokester. Growing up, I never had any boobs, and I don't remember really wishing that I had them either; I think I was good with what I was given. Then after I had children..vavoom out came the sisters in full bloom, and I did not like it. I have often been asked if I had implants, or "what Dr. did your boob job" I am always taken back when I hear someone say that because just for the record, I DO NOT HAVE IMPLANTS...and I have said many times I wish I could get my boobs cut off. Of course, my husband was always in opposition to that idea, and we knew it was a joke, but now as I am being faced with what used to be a joke...becoming a reality, I'm scared. In just a few hours, most of my femininity will be taken from me, forever, never to return; the other part of it will be taken from me in another surgery a few months from now. My bishop and husband gave me a beautiful blessing tonight, and I appreciated every word of it. But the bottom line is that my breasts are being removed tomorrow, not by my choice, but The VILLAIN has decided it for me. I trust the Doctor will be skillful that she knows what she is doing; that is not the problem. The problem is me; how do I fix this feeling inside me that a part of my womanhood is being taken from me? How will my husband look at me after? Can I even let him look at me? How long will it take for me to look at me? I try not to be a vain woman, but I admit I want to look pretty to my husband. It's hard for me to go to bed tonight; I know it's time to go to the MAYO Hospital and face The VILLAIN when I wake up. I'm not ready yet; I still have some housework to do and still have some wedding plans to get done. Last night I had a terrible panic attack at my sister's house; the reality of all of this is becoming hard for me to handle. Tonight I read the 1st letter from my Son Blake; he is in the MTC preparing to serve in the Dominican Republic. He is studying so hard to learn the language that he only got 2 hours of sleep because he wanted to study. He sent me the most beautiful letter and testimony in Spanish; as I read his words, it calms me and makes me feel better about what I will do tomorrow; he has so much faith. On these days when I am feeling like my well needs to be filled, the people in my ward fill it up with words of encouragement and gifts of Love, Blake's faith will fill the gaps where I need it, and I know for a fact the Lord will pick my up and carry me when I cannot do it myself. I pray tonight that the Lord will strengthen me tomorrow as I face this sudden and awful journey I am starting; I have always told my kids that it's not the start of the race that is important; it's the finish that is most important. 
And I plan on finishing this race in the first place.

Can I Endure With Grace

 I wonder if it is even possible to find joy in all we do, to be cheerful in our trials. Are our afflictions and trials but a moment in time? 

According to a talk given by Jeffrey R Holland, they are. (Shawna Crum brought over his speech on a CD for me to watch, it is beautiful, thanks, Shawna)
When I think of all the people who do not have jobs right now, I wonder if they feel this is just a blink of an eye. What does it mean, "if you endure it well, God shall exalt thee on high, thou shalt triumph over all they foes?"
I have felt the hand of the Lord in my life through so many trials I have faced. When I was a young daughter of God, I learned to rely on the Lord; I knelt and prayed day and night for the Lord to get me out of my situation; I promised him I would obey and follow the rules and honor his name...if he promised to just get me out of the HELL, I lived in every day. He did. 
Because of my sincere faith in the Lord, I was blessed to marry a man I adore and love, who has always treated me with respect and honors our marriage as a sacred covenant between husband and wife. Has our marriage always been perfect? Yes, it has, to me it has, a perfect marriage is to understand each other, even if we do not agree, to be willing to hear the other side and respect each other's decisions as individuals, to be able to work out any differences by including the Lord in all our decisions. We have learned to forgive each other for our shortcomings and love each other through good and bad times. Is it hard at times? Absolutely !!! But who said it would be easy? I have always believed anything worth having is worth working hard for.
Now, as we face this new trial, I wonder, if I have enough faith to endure it, will I be able to do it with dignity? And can I be cheerful? Is that even possible? I sure want to be, but I know I will fall short, and it scares me. I want to have that magnificent attitude and maintain it during the good times and the bad, in sorrow or joy; what if I fail? 
So many people have said to me, "You know that the Lord will not give you any trial he knows you cannot handle?" every time I hear someone say that (and I too have said it before), my mind says its true, but my heart says "can I do this?" can I be the wife and mother that I want to be, with a cheerful heart? Can I find joy somehow in this journey?  
I feel the love of my family, friends, and especially the comfort of the Lord. During the hard times in my life, I have felt the closest to the spirit. There have been times when I have felt alone, but I have always been able to re-connect through service to others. I feel a little guilty because I am not giving to others; what am I doing to serve so many in need right now? (I will work on that one this week) 
One thing I do know without a doubt is that bad times do come to an end eventually, maybe not the end that we were expecting or even that we want; when we are faithful to that end, we will be blessed, and I love this quote and believe it to also be true "heavenly promises are always kept" Heavenly Father will always keep his promises, it is just who he is. 
So sounds like I have some questions that need to be answered and the only one who can answer them is me...
1. will I be cheerful during my afflictions? 
2. how can I find joy in this journey? This one is a big ????
3. what does it mean to endure it well?
4. forget yourself and find someone to serve; who will it be?
Tomorrow it's back to Mayo for more tests to be run, and Tuesday, I meet with Dr. Pockji (oncology surgeon)to schedule the surgery. I'm a little anxious, but I think the bad news is behind us.

A Day In My Life At Mayo Clinic

 I left the house this morning at 9:30 to make the drive to the Mayo Clinic in Scottsdale.

Eric and I went to the 3rd floor to check in at 10:30, it was a reception area much like a bank, you wait in line until the next teller is available to check you in. We filled out a ton of papers, (you know so the insurance can get their money) we were walked back to the breast clinic, where we went into a room and waited for the nurse to come in and ask a ton of questions, finally we were able to see the Surgical Oncologist, her name is Dr.Pockaj (pronounced Pochki) I was impressed with her knowledge, we spoke with her for about 45 minutes.
Then I was handed a Patient Itinerary:
12:10 Routine Lab Work 5 viles of blood
1:20 Radiology Chest X-Rays 
2:15 check in for the MRI get the IV put in the arm in prep for the MRI
3:15 actual MRI very loud an annoying, sounded like a sledge hammer going off
4:30 Cardiovascular ECG Electrocardiogram
We got home around 6:30 pm
I am exhausted and hoping that I don't have to talk about any of this tonight. Pretty much nothing more is known today, I will be going back to the Mayo on Thursday or Friday (the Dr will call tomorrow to let me know) at that time I will meet with a GYNO for the hysterectomy issues, a genetics Dr. this will help them to know how to proceed with treatment, and the plastics Dr.
Today I am feeling a little overwhelmed knowing what I am facing, it was good to move forward though.  
My sister will call my mom to find out about any cancer on her side of the family that may help the genetics specialist. I don't think we necessarily need that information to get the answers we need, but she will ask anyway. 
I am happy to be home with my family, to relax tonight and not to think about the cancer...not sure I can do that, but I am sure going to try tonight. I love my husband, he is a trooper taking me to and from my appointment today, he had a lot of questions for the Dr and I appreciated him for that, because I don't always remember what I want to ask, but he wrote it all down. Tomorrow is a new day, and one day closer to this being over.