Monday, January 30, 2012
Tonight, I'm in some pain. The process was not what I was prepared for, they have to inject some dye into the area around the bone, the contrast helps them see what is going on in my hip bone. I really liked the doctor, he explained each step of the way what he was doing. They numb the area first, then inject the dye, he told me to let him know if I had any pain. Then..... he hit my hip bone twice with the needle--OUCH--
After talking to me about side effects, the nurse got me off the table and told me to walk down the hall for the MRI. There was a strange feeling in my leg, probably because it was numb.
They took me immediately in for the MRI. Oh no, I remember this machine. I asked if I could listen to some music, being so claustrophobic I was afraid of having a panic attack. For the next 45 minutes I listened to the Eagles, and suffered through the pounding noises of the incredible MRI machine.
As I sit here, in my bedroom, I can't help but think "when is this going to end?" I rub my hand over my port and wonder if I will ever be free of this VILLAIN or the side effects.
Sunday, January 29, 2012
Friday, January 27, 2012
1. you have to be on the tramp with him-----
Monday, January 23, 2012
As I sat and watched and observed this huge support system he has, it reconfirmed to me how vitally important it is to nurture good relationships, be kind to everyone who is in your life, and those who are passing through, tell the people in your life how much you love them, how much you appreciate them. Hold on to good memories and cherish the happy times. What a happy time for this guy and his family. I KNOW he will remember this day and hopefully it will bring him comfort on a day when he feels alone or scared--Thank you for inviting me to share in this moment with you and your loved ones.
Sunday, January 22, 2012
The past couple of days have been rough, not a lot of sleep, insomnia is kicking me in the behind. It's the worst feeling to be up all night, staring at the ceiling, knowing in just a couple hours I have to get up and go to work. Part of the reason for this besides the obvious hormonal, cancer crap, is I just realized that Us Airways has changed our insurance carriers, and I may not be able to go to Mayo Clinic anymore--when I opened the envelope and read it, I literally wanted to throw up, I felt sick. Eric had just got home from work when I was reading the mail, I asked Blake to please go get him, when he came down stairs I asked him to read it too, he read it, and read it and then read it again, the next couple of hours I tried to find out some information but of course the offices are closed until Monday--I was watching Recker he was a great distraction, he and I jumped on the trampoline together, I had to keep saying to myself "it's OK, whatever happens, you can't control this, so just go with whatever happens" yeah right, this means no more Dr. Northfelt, Dr. Magtibay, Dr. Freeman, Dr. Kreymerman, MaryAnn Forrett,, and all the wonderful people who have touched my life and been with me from the beginning of my journey. I could not get my mind off of it, I watched a movie with Recker on my bed, he makes me laugh and takes everything away just for a little bit--I loved that time with him, as soon as he fell asleep on my chest, I laid him next to me and just stared at him--he is so perfect, so untouched by the worries of the world.
Needless to say Eric and I were up all night worrying about this insurance thing, I went down stairs and laid on the sofa, it wasn't long before he was sitting next to me. I love Eric, he looked at me and said "no matter what I want you to be at Mayo Clinic with your doctors, I will make it happen" I told him it's not fair, it's not that I think Mayo Clinic is superior to any other facility, it's just that those are MY people, they are the ones who I cried with, the doctors I love and who I feel love me and know me. I will never share with any other doctors what I shared with Dr. Kreymerman and Dr. Magtibay they know a part of my life that I have never shared with anyone else, except Eric. I was so upset I looked at Eric and said "it's like driving a Porche and then all of sudden being told you have to drive a Pinto, but you are going to have to pay more for it. He looked at me and responded "yes sweetheart, but you still have a car"
Saturday, January 21, 2012
Tuesday, January 17, 2012
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
if anyone is having a difficult time with any of these, its time to reevaluate and rediscover who and what are important to you.
Saturday, January 14, 2012
|I ♥ Recker|
The best part of my day was coming home and jumping on our trampoline with Recker--he loves me, I have the hardest time explaining what my heart feels for that little guy--he smiles so big with his teeth showing and I can't help but laugh and squeeze him--he takes my hand and leads me outside to the tramp then climbs up on it, and grabs my hand to lead me on with him. Just the act of leading me and guiding me is such an accomplishment for him, but more than that I love all that he has taught me about patience, and listening with my heart. I'm convinced that unconditional LOVE is a gift from above. Happy Birthday to Me.
Monday, January 2, 2012
In 2011 I learned it's OK to admit when I'm scared, I learned this from my daughter Kayla, when she explained to me how odd I acted when I was diagnosed with breast cancer. Any person who has had a serious illness can understand what I am about to say--and to the rest I hope you can respect it. The experience can be very lonely, it can strip you of your dignity, emotionally drain you and leave you feeling depressed and loaded with anxiety--I'm not sure why this happens but it is normal, I was NORMAL. However, I will say this.... the more you are surrounded with family and people who love you, I mean really, really love you the more connected you feel, the more you want to fight. Even if you have to give up your lifestyle from "before cancer" as a patient you need to feel like you are part of the CLUB-the club where all the living are--it helps to hear and see lives moving forward and progressing--I guess what I'm trying to say is I get scared but I don't let fear rule my life.
In 2011 my son Blake taught me, he taught me I can do hard things..we all can accomplish hard things. I think I thought my battle with cancer ended when I finished chemo and radiation, actually that was only the beginning, it was a huge hurdle to get over and I seriously thought I had won. The headaches, the back and hip pain, nausea, insomnia, injections, viles of blood taken, procedures, scans and all the other physical pains are just minor battles, I have learned to devote what strength I have to the most important things of life, having meaningful relationships with my family, my husband, children and those who care. Journaling feelings, thoughts and desires are important for my family and heritage to read after I am gone. My son is an incredible example to me of someone who knows the importance of these things, he lived without a hug from his mom for 2 years, he devoted all he could to the people of the Dominican Republic he conquered and returned with honor, I am grateful for all he has taught me.
This past year I learned to laugh, the importance of it. Laughter is a life pleasure, I love to see Recker laugh, especially when all his teeth show, I can't help but laugh too. No matter what is happening in life, there are still plenty of reasons to laugh, I hope I never let a time pass when given the opportunity to laugh, don't let those times pass--reach out and grab them, laugh with all your heart.
I spent New Year's Eve and day with Recker, Kayla, Jeremy, Blake and Chloe, kind of a last minute decision we are in Mexico. I am grateful today for a new year, new goals and the opportunity to learn from what I have experienced. It's exciting to look ahead, not knowing what this new year will bring. I am dedicated to a new year of learning, giving and sharing--I want to make a difference in the life of someone this year--