Finding Humor at Mayo

Today was interesting to say the least at the Mayo Clinic, we checked in at 3:00 for a 3:15 appointment with Dr Pockji (oncology surgeon) When we arrived there were about 20-30 people waiting to see their doctors. Eric says "wake me up when they call your name" I put my head back and try to get an eye rest also. After an hour, I asked them if I had been checked in correctly, because it has never taken this long. She cheerfully tells me that "yes you are all checked in" Seriously? It is now 1 1/2hours past our appointment time and NO-ONE is left in the waiting area, well with the exception of the Williams.
They finally take us back, and an hour later Dr Pockji comes in. She apologized and said that one of the surgeons did not show up this morning, so she had double the load today.....I'm thinking I wonder how many years this lady had to go to school to get a degree of medicine, I know she is a logical smart woman right? So why did she not know THIS MORNING if she was taking on another Surgeons load of patients, that she might get a little behind, that perhaps someone in the office... like her physicians assistant could of given me a call and told me to reschedule or come a little later so that I would not have to wait for 3 hours to see the the Doctor...??Just one of those things that make you go.... UM duh?
Now the serious stuff for a minute
Dr. Pockji explained to me the surgeries I need to have, at this point she was wanting me to have all of them in one day, which would be 18 hours of surgery, 18 hours of being under anesthesia? I don't think so....I told her as fun as that sounds, I would have to decline at this time...ha ha..actually I told her that my son is leaving to go out of the country for 2 years and I will not be able to talk to him (with the exception of Christmas and Mothers Day)or see him in those 2 years, so it is important for me to spend some time with him, I really don't want him to see me after surgery, also that my daughter is getting married on November 14Th, and I still have alot of planning to do, and that my other daughter is having a baby in December and would like me to be in the delivery room with her. Dr. Pockji kinda looked at me like "what the heck, who are you?" but she agreed that this would be way too much surgery with everything I have going on in my personal life, she said that the wedding and baby are more important right now than anything else. She explained to me that I will be having another surgery anyway in 5-6 months so at that time we will do the other procedures that I need done, including the hysterectomy. I can't believe the relief I feel knowing that instead of having 5 different surgeries going on at one time I have cut it down to 2. So just like that...I put 3 of my surgeons on hold...WOW the power I have today huh? Now if I could just have the power to get this nasty old cancer to leave my body.
So this is what is happening now: The last week of Sept or 1st Week of Oct I will be on the schedule for my mastectomy and beginning of the reconstruction surgery. After the surgery she will be able to tell us more about what stage the cancer is in, they know for sure that one of them is in stage 2-3, and something new I found out today is that both of these cancers are different, one is ductal carcinoma, and the other one is a hormone fed carcinoma. (this one I need to find out more about)
OK back to the funny stuff, when Eric and I left, there was not one other person in the building, except for the 5 or 6 maintenance people who were coming in to clean, Eric and I laughed as we skipped to the car, Eric wanted to sing on the top of his lungs and do cartwheels in the halls...if you have ever been to the Mayo Clinic you would understand that reaction, it is normally wall to wall people, busy people trying to get to appointments or nurses and doctors rushing to somewhere, when we arrived we had a really hard time getting a parking space, now the parking lot had our car and maybe 3 others, we decided those must of been the maintenance workers cars...this may not seem funny to you but to us we enjoyed it. We ended up being in Dr Pockji's office for 3 hours by the time we left, and I think only us and her remained in the building, which is a pretty large facility. Its good to have a few answers today, not that it changes anything, but it takes my stress level down a little to know I will have 2 surgeries instead of one big huge 18 hour one.

Mayo Clinic Symposium Living with Cancer

Do normal people go to cancer symposiums on their birthday? That answer would be.... Probably NOT. Me, I'm not your average normal person, it was exactly what I wanted to do and I'm so glad I did. Knowledge is empowering I want to soak in every bit of information I can about the VILLAIN in me, is it possible for he and I to live together without recurrence on his part? After listening to all the incredible doctors at Mayo Clinic, I walked away feeling like I'm in complete control of life and whether or not the cancer comes back in days, months or years I have no regrets.

I was fortunate to hear from all of my personal doctors at the symposium.  I'm really not a person who normally likes to sit and listen to lectures, however, this was close to my heart and I didn't want it to end--the information I got was invaluable for me.  There is something  to be said about sitting in a room full of cancer patients and their care-givers.  When we broke out into our disease specific sessions, Dr. Northfelt said he wanted it to be more of an informal session and allow patients and care-givers  to ask questions.  Dr. Pockaj is the surgeon who performed my mastectomy she spoke 1st, one of the most important things I took away from her speech was that 35% of patients find their own lumps by doing regular breast self exams-- I am a firm believer and endorse this frequently on my FB page.  I was told one time that a doctor told a patient she does not need to be doing her BSE because they are ineffective--- I'd say 35% is a significant percentage so I will continue to endorse.  The other thing I learned is that after a bi-lateral mastectomy (which is what I had) there is no need for mammograms.

Dr. Michelle Halyard was my radiation/oncologist she spoke next--I loved all she had to say and it confirmed to me that every fear, anxiety, memory loss, insomnia, pain, joint  muscle fatigue and loss of appetite is normal.  Imagine my surprise when I found out I was NORMAL-- well at least when it comes to being a cancer patient--I can't get anyone else to tell me I'm a normal person in "real life"

Next up was Dr. Northfelt, it's no surprise that I have not been happy about the fact that I do not really get to see him--I have been looking for another oncologist--Not all cancer patients feel the way I do--I am someone who NEEDS to see her oncologist at least once a year, and I have asked for this but been told that because Dr. Northfelt is also the lead oncologist for Mayo Clinic he is very busy and has administrative responsibilities too. He is a wonderful Dr. I remember the 1st time I met him I felt so comfortable, he made me feel good about my diagnosis and gave me hope for my future--I loved that he was my doctor--after talking to other cancer patients, not necessarily from Mayo Clinic, I have discovered that they all see their oncologist--I know patients who are just fine with seeing the PA (physicians assistant) they don't want to bother with the doctor, or that seeing the doctor creates anxiety or unwanted fear--I AM NOT THAT PATIENT--seeing him continues to give me hope, helps me to feel like he is completely on the same page with me and that he knows who I am, I'm not asking for much just once a year, as much as I am at Mayo that is fair--right?
OK so back to Dr. Northfelt-- before the break out session started he approached me and thanked me for the tie I gave him for Christmas--I was shocked that he even knew who I was, but gave me comfort knowing he did.  He lectured about health and fitness--but before he started he said something that brought tears to my eyes, he said that a patient he had not seen for awhile had just told him she had decided to see a different oncologist and that Dr. Northfelt was not providing her with the care she needed.  He seemed really sad about this information, it touched my heart and brought me to tears.  This is the reason I wanted him specifically for my oncologist, he has a heart.  What I took from his lecture is that I am doing everything he asked me to do, he talked about the book Anti Cancer, he again confirmed to me that cutting out sugars, fats and having regular exercise in a daily routine will help lower the risks of recurrence--walking at a natural pace 3 hours a week also reduce the risk of Breast Cancer relapse.  I'm in check with all he suggested, I know if my cancer returns I did all I could do--NO REGRETS.

Maryann Forrett is the PA for Dr. Northfelt she spoke next--her subject  was intimacy and sex during and after cancer treatments--kinda an embarrassing subject to talk about but she was eloquent and touched on everything that I had questions about--I did raise my hand and ask a few questions--I prefaced my question by saying "I know you all have had sex and you all want to ask what I am about to say but are too embarrassed so hear goes" and I asked my questions, I don't really feel comfortable sharing those on my blog, in that room though it was OK because if there is one thing I have learned all breast cancer patients share a bond, an understanding of the changes that occur in your life while going through such a difficult time. Intimacy for so many patients changes, for breast cancer patients especially, for the obvious reasons your body has now changed, I don't care how much you love and trust your spouse or significant other the fact is there are scars YOUR BODY IS DIFFERENT and exposing that vulnerable part of who you are, as a woman,  can truly be devastating.  When I had my mastectomy I did not want Eric in the room at the hospital I asked Dr. Kreymerman to have him leave the room while he examined me, I know it hurt him I could see it in his eyes, I knew he loved me, that was not the problem, I didn't want him to see  what I could barely look at--it took me weeks, maybe months before I would allow him to see me--that moment when I allowed him to see what I could barely stand to look at in the mirror was an intimate moment for both of us--intimacy is so much more than sex.
For the not so obvious reasons, an estrogen fed cancer changes everything, it is a part of what makes women sexually function correctly, and for me estrogen has to be blocked with medicine--the side effects for these medicines are a list I don't even want to bore you with--it's awful to not have control over how our bodies function, Heavenly Father created us perfectly and when something is missing or not working it all goes to heck--hot flashes, anxiety, depression and a low libido are part of that.

Pauline Lucas who was my physical therapist had a quote that I love  "Believe in Life, In Your Life" she spoke about meditation, health and fitness.  I love her, she was such an inspiration to me and I loved having my sessions with her--I miss her.

Overall, I learned to live for today--celebrate TIME, and hold on to all the good memories, make connections with people be meaningful, remember good and fun memories and write them down to reflect back on days when you need to be uplifted. Find something to laugh about everyday, it's the best medicine. My quality of life depends on ME and me only, it's all about quality not quantity.
These are my four F's
FAITH
FAMILY
FRIENDS
FUN
if anyone is having a difficult time with any of these,  its time to reevaluate  and rediscover who and what are important to you.

Home is where my heart will always be

I wanted so badly to journal while I was in the hospital but I was pretty out of it and feared that I would write something that did not reflect my true emotions or feelings. Tuesday we got to 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 that they were 70%-80% sure the lymph nodes were clear. Eric was so excited when he was told that I would have to either 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 I 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 so 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 he started to cry, Dr Pockji was very compassionate as she told us that on Monday I will 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 that as they dissected them they were able to see several nodes with positive results. She said that we will 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, this 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 want to go home, I asked the Dr 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 and 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.