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.

Pain and Purple Tulips

SUNDAY, APRIL 3, 2011

Pain and Purple Tulips

Saturday, I watched conference, and the talk that stood out to me the most was Kent Richards of the Seventy. He spoke about pain. I loved when he said, "The Savior is not a silent observer. He knows personally and infinitely the pain that we face." Those words will stay in my heart and mind as I face this next week. I certainly feel peace and comfort; I know that whatever the Lord has in store for me, it is His plan, and with His help, I will follow God's plan for me.
Over the last few days, the pain in my hip has escalated. I finally called Dr. Northfelt's office Thursday, and Maryann called in a prescription for the pain. I'm sad when I think about going back on pain medicines; it feels like I'm going backward instead of forward. I refuse to take the pain medicine unless it gets to at least a 7 on a scale from 1-10, and I won't take it during the day when I watch Recker. The pain got so bad I could hardly walk, and I even cried yesterday when I was at Costco getting some last-minute things for dinner. Kayla begged me to take some medicine, but I wanted to spend some time with my family tonight. 

I realize I need to do as the doctors are telling me, at least until we have a diagnosis and can find out what the culprit of all this pain is; however, my family means the world to me, and if I have to be in a bit of discomfort just to have some fun time with them, then dang it I will. I am hoping for another miracle. Is it selfish to ask for one more? I believe the miracle we received after my last surgery was such an incredible modern-day blessing, and we needed it. I still thank Heavenly Father for that miracle.
I received a  bouquet of beautiful Purple Tulips; I love all the spring colors and flowers, and they smell like Heaven; thank you to whoever you are that had those sent to me; it really made my day. I also received a beautiful bouquet of flowers the day before, and someone dropped them off at my door. Still, I don't know who you are but thank you so much; those acts of kindness cheer up the sad and make me feel glad, glad I have people in my life who love my family so much and who don't care about getting recognized for it, you are true Angels on Errands, and I love You.

 

Diep Flap vs. Expansions with Nipple Sparing

 

WEDNESDAY, OCTOBER 20, 2010

Diep Flap vs. Expansions with Nipple Sparing

A little over a year ago, Dr. Peter Kreymerman met with me in his office to discuss my options for reconstructing my breasts. I remember him taking a marker and drawing a design of each choice on the tissue paper that patients usually sit on in a surgeon's office,s. I was amazed then, and I still am at the knowledge and talent of Dr. Kreymerman.
At that time, my mind was so full of un-uncertainties and lack of knowledge I really did not care what he did. I just wanted the VILLAIN out of my body....who cares what boobs look like, right? Some have asked me what the difference in the options I was given are; I will try to explain it to you, but remember, I chose the expander, so to really compare the recovery would not be fair to me.

DIEP flap is a procedure that is actually very popular among surgeons and their patients. A DIEP Flap procedure uses fat and skin from the lower abdomen but does not require removal of any muscle. When Dr. PK drew that picture on the tissue, my mind was checking out. Are you kidding me? Now I was looking at another scar as a constant reminder on my abdomen?

Then he explained the expanders; a tissue expander is a temporary device placed on the chest wall deep into the pictorial's major muscle. This may be done immediately following the mastectomy or as a delayed procedure. The expander's purpose is to create a soft pocket to contain the permanent implant. Dr. Kreymerman put my expanders in at the same time as my mastectomy. Then over several months, I visited him every other week, and he stuck a needle into the port of the expander and filled it with usually around 50cc of saline per breast; this part was painful for me, I think, because I was also going through chemo at the same time, so I had expansions one week then chemo the next, I remember feeling really sick one week then really sore the next. Dr. Kreymerman is also among a few surgeons who can do nipple-sparing for mastectomy patients. I'm not sure of the qualifications, but I know I qualified, and this is how Dr. Kreymerman became my "nipple repairman."

The 2nd part of the expansion surgery is what I just had on Thursday, expansions out and implants in. Again as I have stated before, be careful what you say "you would never do" I used to say I would never get implants...mostly because I already had big boobs, and I hate big boobs... I am amazed at how soft my boobs are now, they were as hard as a rock a week ago, and now they feel normal. I am still in some pain from the incisions, but the pain I am feeling now is temporary and is nothing like the pain I have been feeling for over a year now.

From what I have experienced and from what I have read, expanders with nipple-sparing will give you a totally normal-looking breast. The pain you will have to endure will be worth it if you look for an average-looking breast. With the diep flap, I am not sure they can do nipple-sparing (you will need to get a tattoo) and no long-term pain in your breast, but you do get a tummy tuck out of it all. Either way, if you decide to go, there will be a pain, and there will be scaring.

My Fun Visit With Doctor Peter Kreymerman

WEDNESDAY, JULY 21, 2010

My Fun Visit With Doctor Peter Kreymerman

Today was my appointment with my favorite doctor Doctor Peter Kreymerman. First things first, I asked him if anything new and exciting was happening in his life he answered, "yes, we are pregnant" at first, I thought he asked if I was pregnant, my reaction was, "uh, no, I'm not" as I patted my belly then I realized he was talking about his wife. I am so excited for them; they will be having a little baby girl at the end of November. He looked so happy, and I'm sure his wife is cute as can be pregnant. He better be good to her. Heather is on vacation this week, and we missed seeing her.
Since Mayo Clinic is a teaching clinic, he had a beautiful young student with him who had been learning from Dr. Kreymerman since the middle of June. I asked her if he was a good teacher she said he was terrific to work with..... I knew he would be. PK and Tamy got into some medical jargon about my breasts; some people would think, "how embarrassing, or how strange," but it's not. I have been so exposed this past year that nothing really bothers me. My breasts have been seen by every student he's had. I say just call it what it is HARD AS ROCK BOOBS. I can't wait for these expanders to be out of my body; they feel like granite. It's a good thing Tamy knows this stuff; she always explains it to me even though her explanations are way over my head.

I was telling Dr. Kreymerman about the anxiety attack I had last night. I was sitting on my bed reading, but my thoughts were everywhere. Eric is out of town, it's the 1st time he has left me since my diagnosis, and he calls me a lot, but last night I could not control my thoughts and fears, and I began to freak out. I was trying to think of ways to prevent it, so I got some nail polish (bright pink) and started painting my fingernails; what? I have never had colored paint on my nails, especially not bright pink... I liked it, ok, so back to the attack soon I fell asleep. When I woke up this morning, my nails were seriously JACKED UP; I found some remover and took off the polish. I'm not sure if this worked or if it was just really, really weird. I love talking to PK because he listens, and I'm sure he thinks I'm a little strange, but he always laughs and makes me feel comfortable. I asked PK if he liked my hair, and he smiled and politely said, "yes, but I liked your long hair better" that made me happy, finally someone who could be honest. I liked my long hair better too. 

I love my oncologist too, but I can't joke with him like I do PK; today, I thought, "I need to find a way to get Dr. Northfelt to laugh."

We laughed and joked with PK for about 1/2 hour. I told him about some of the experiences I have had since losing my hair, the lady who asked me, "did you cut your hair like that on purpose?" and the lady in Walmart who told me my haircut was terrible and gave me her hairstylist business card. The best story of all was the lady from Subway who hit on me. Dr. Kreymerman laughed and gave me a big hug. He also said the same thing Eric did "take it as a compliment" After examining me, PK said it all looks good; surgery is on the schedule for October 12. 

I am grateful for Doctor Kreymerman; I wish every VILLAIN patient could experience the compassion, whit, and professionalism I have experienced with him. Going into surgery, I will be in good hands; Doctor Kreymerman cares for his patients.

After PK, I had another appointment to get my PORT flushed (something I have to do once a month). Walking into the hospital, I started to panic, but Tamy was good about keeping my mind on other things. I know I can do hard things, but it helps to have Tamy with me; she is a gift from Heaven. Thank You, Girl.

http://monyabonbon.blogspot.comLABELS: CANCER, DR. KREYMERMAN, DR. NORTHFELT, JOURNALING 

36 Hours And Still No Baby

 

SUNDAY, DECEMBER 13, 2009

36 hours and no baby

Kayla was induced at 5:00 am Saturday, December 12. It is now Sunday, December 13, and still no baby. After spending most of the day with her yesterday, they gave her 4 rounds of gel which is 16 hours, and she was still only dilated to a 1 and 1/2.

Finally, about midnight last night, the nurse started her IV with a round of Pitocin. (not sure of the spelling). I cannot sleep, the hospital is only about a mile and a half from my house, but every time I go home, I feel like I need to be there. 

At 6 o'clock this morning, her doctor came in (who, by the way, delivered my babies), broke her water, and ordered her to have an epidural, still only dilated to 2 (and I think they were being generous as not to discourage her) Kayla took the epidural like a champ, I think she had heard so many bad things about how large the needle is that she was really nervous, but she did so good and after said "that wasn't bad at all" I told her "the length of the needle does not change the pain, it is the same pain no matter how long the needle is, and it's better than being in pain for the next few hours." 

Little did I know, the doctor came in and checked her around 10 am Sunday and said that I should stay home and get some sleep. Kayla will not deliver for another 10-12 hours. I took his advice, my breasts are throbbing and aching from my expansion on Wednesday with Dr. Kreymerman, and I have not taken any medicine since Friday night. I am DONE with expansions; I can no longer handle this excruciating pain. Next week, I will tell Doctor Kreymerman when I see him; I can't do this anymore. 

I finally fell asleep around 12:30 and woke up panicked around 3:30. I called Jeremy he said she is dilated to 3 now and still only 60% effaced. I just heard from Jeremy. It is 6:00, and she is dilated to 5 finally, and 80% effaced. I will head back down to the hospital in an hour and stay for the duration. I hope she will have the baby before I need to leave for Mayo Clinic at 8:00 am in the morning, my chemo appointment is at 9:00 am.

I feel so badly for Kayla. Dr. Lepetich induced her because she wanted me to be there for the birth knowing I'd have chemo and would be sick all week and could miss the delivery. When you induce a child when they are not ready to leave Heaven, it is harder on the mommy's body. Kayla has been so patient during her labor. She is stronger than she thinks she is. I was so impressed with her ability to withstand such long hard labor. Jeremy is so sweet and soft with her. They are both going to be wonderful parents.

The Strangers Who Become Our Friends

The day after expansions, I literally want to slap someone...namely Dr. Kreymerman. Good thing I am not seeing him for another two weeks. My breasts hurt so bad, this last expansion was the most we have ever done I am paying for it now. I told Haleigh today it feels like it did right after I had my surgery, they (boobs) ache and I cannot get any relief. When I cough they hurt; when I breathe, they ache. I can't turn over in the bed or on the sofa because they constantly remind me of The VILLAIN. Last night I took 2 Vicodin, 2 muscle relaxers, and an Atavan before heading off to bed around 1am. I could not sleep. I got up, came down stairs, took a warm bath, listened to some music, and tried to get my mind in the right place. However, nothing I did worked. My mind wandered and raced; you would think I would be knocked out with that much medicine in my body. I got on the internet and did some researched then looked on FB to see if anyone was out there; by now, it was about 3:30 am, not one of my friends was awake. WHAT???? Around 4:30, I went into Blake's room and quietly snuck under the covers hoping if I was really soft and quiet, it would work......how dumb is that? I listened to his clock tick tock, tick tock staring at the ceiling of darkness until Eric came in the room around 8am. Then I got up and was totally awake and ready for my day. Having insomnia is one of the worst things to experience. I hope I can sleep tonight.  If not,  I just might be calling someone, one of you, at the wee early morning hours, just for a bit of chat.
Ok so, the highlight of my day today was from a woman I have never met or seen before in my life. Saturday I headed over to Dillard's to pick up some Origins Grapefruit Bath Wash and body Souffle. The sales lady talked me into trying this soothing bath stuff for aromatherapy. That night, I was throwing up from the smell of it (I think because of chemo). They also gave me the wrong package, and I did not get any of what I went to Dillard's for in the 1st place, today I went back to exchange it. I explained to the sales lady how sick it made me, she was so surprised, she says everyone loves it. When I also explained to her that I have The VILLAIN inside me. I am going through chemotherapy, she smiled and said, "I'm sorry this happened to you, let me see what we can do to exchange anything you want" We rectified it all, and when she was done ringing me up and finishing the exchange she looked me in the eye and said, "what is your name?" I told her Monya she said, "I am going to pray for you" I could feel this sincerity in her voice and in her beautiful Latino face. Something was different about this lady; I could feel it.
She had on a necklace a picture of a young boy and I asked her who it was, she said
"This is my son, he died 2 months ago," I asked her how he passed she said, "He was diagnosed with The VILLAIN one year ago, it attacked his legs first, his bout with chemo was successful for the 1st few months, then he became immuned to all they tried, and he died at age 11" My eyes were full of tears we shared a hug. She said "When I say I will pray for you, I will, I pray the Lord to take away your pain, and I ask you to please come visit me again."
So today, I complain about not sleeping, about my aches, and it seems to not be as important anymore. Life could always be worse. I could NOT have my life. I hope everyone I know will read this and find something in their life to be grateful for; just for today, be happy about something, look forward in life with optimism, knowing that you are loved and appreciated by ME!!

LABELS: Blessings, Chemo Therapy, Dr. Kreymerman, Friends, Prayer, Side effects, The Villain

Mayo Popcorn

 

This morning I went to see Dr. Peter Kreymerman. I realize what a special blessing my doctors are in my life. Every doctor I have been referred to has been a tender mercy in my life. 

My neighbor Pam Jerome found out about The VILLAIN and emailed me about a friend who lives in Indiana who recently found out about her VILLAIN. She asked if it would be Ok for Sandi to contact me. We have been corresponding through email, and when I told her about Dr. Kreymerman, she made an appointment at Mayo and flew out to see him last week. I told Dr. Kreymerman today that I deserve some referral money from him; he agreed.... and said he would see what he could do. Sandi is scheduled for surgery in a couple of weeks at the Mayo Clinic with Dr. Peter Kreymerman.

I do love to see Dr. Kreymerman. We have a fun banter going every time I go, yet he is serious when I need him. I think I am almost crossing a line of a stalker patient.  He asked me today if my hair was a wig? "WHAT??? Are you kidding me right now?" was my reply. He just laughs at me. Should I be worried? Do most doctors laugh with their patients? Not any that I've ever had...and notice I said laugh with.

One of the things I love the most about Mayo Clinic is the popcorn at the Phoenix campus. When I was in the hospital, Eric had popcorn every day. I introduced Tamy to Popcorn. She loves it. It's our treat after expansions with Dr. Kreymerman. We really loaded up today; I wanted to give Eric a little treat when he got home, so I brought some home. My life is full of wonderful, tender mercies. Is it ok that popcorn from Mayo Clinic is one of them?