Hello all! This weeks story is from Lisa Wilkinson. I have never met Lisa. She emailed me one day and told me she wanted to share her story. I was so thrilled because I know there are thousands of women and (men) out there living with metastatic breast cancer. I want everyone to be able to share their soy. So enjoy Lisa’s candidness. As with all breast cancer thrivers…..we are the REAL deal.
Back in 2008 at age 45, I found a lump in my right breast. I woke up at 2am and felt God urging me to feel my breast. Now I often wake up at 2am but not to feel my breast! I felt a lump under my right nipple. I wasn’t sure what to do so I called my OB/GYN and went to see her. She recommended a mammogram. I had started to have mammograms at 40 as recommended so I had had a few already. After the mammogram, I was told I needed a biopsy. That is when I learned I had invasive ductual carcinoma. Surgeon recommended a lumpectomy. We also did the test to see if we could do the sentinel node dissection however the dye wasn’t going through so when the surgeon did the lumpectomy, he also did axillary node dissection. The tumor was large, 3 cm, however the lymph nodes weren’t affected. I did 4 rounds of chemotherapy and internal radiation, Mammosite.
The summer of 2014, I noticed my lymph nodes under the right arm felt funny. Went in for another mammogram, biopsy recommended (I knew then that I had a 50/50 chance it was back) and sure enough June 2014 biopsy confirmed cancer was back.
I went back to my original oncologist but wasn’t happy with our conversation so I went to a training/teaching hospital for a 2nd opinion. My new oncologist ordered many more tests. Then I got a call from her saying their was a spot that showed concerned in my hip area and she recommended a biopsy there. That is when mets to bone was found in my hip and a couple of spots on my spine – so Stage IV mets to bone diagnosis came July 2014.
I’m on letrozole and the monaleesa 2 trial with LEE011. I get monthly Xgeva shots too.
I have my own business, I’m married and I have a 14 year old son. I’m a mover and a shaker, love helping others with the work I do. I’m involved in my church and my son has lots of activities he is involved in as well. I tend to be a workaholic so when this diagnosis came to me, my first question is “how long”. I kept asking this question to my nurse and told her, “I need to know because I’m a workaholic and I want to know if I need to do life differently” She asked my onco who said “tell her to play more and work less”. So that is what I’m doing! I’ve taken 5 major trips with family and friends as well as several weekends away with my hubby. I love to travel and often would think “I can’t take the time away from my business to be gone a week” Well no more! I love my work but I don’t stress about will everything be ok if I’m gone a week. I just go and I’ve found that it ALL WORKS OUT! God is so good when you do what you can and leave the rest to Him! I do find that at least 1-2 days a week I get fatigued and the pain sets in so I’m learning to slow down a bit and give myself a chance to rest. That is hard for me to do as I like to go and blow.
I find the most joy is staying in the present – today matters. I don’t know about tomorrow and it’s wasted energy to go there. I’m on several FB groups of metsers and we all have own momenst of “what does this mean” “how long do I have” “someone else has just passed on from this” and when I see myself going down the dark hole, I stop reading the posts. it’s hard because I like to be informed, to be an advocate for myself as a mets patient so it’s good to know what others are experiencing. Sometimes, it just takes me to a dark place. My husband will say “do you need to be reading that” I also have a friend that will caution me when she sees that I may reading too much. So staying right here, in the moment, enjoying the little things – like time with my son or husband just laughing. Having a good cry helps too – just get it out.
I get tired of people wanting to tell me about “this or that” treatment that they’ve read about. Then they say “well you’re looking great” which I told my husband once, I’m so tired of hearing that to which he said “you don’t like it when people tell you you look good?’ LOL. I guess I just think I know what they are thinking “well you don’t look sick so you must be OK” Then there are those that say “hope you feel better” like I have a cold or sinus infection. I wish that people would just say “I don’t know what to say except I care for you and I’m here”
It’s nice to have someone go to appointments with you. It keeps me for getting down when I have a friend with me to keep me distracted. I have a wonderful supportive awesome husband but he isn’t the best one to go to appointments with me. My friend that goes to alot of them will take notes, ask questions, and then let me talk it out on the way home. I’ll ask my husband what he heard and he is like “I don’t remember”. For the big things, like surgery, he goes. Now that I’m a year into this, I don’t ask anyone to go as I’ve got the routine down but it is harder. I usually cry going to or coming home because I just hate all this stuff. If I happen to say to my friend that I have an appt, she doesn’t ask if I want her to go, she will just say “what time do we need to go” That is the best! When you don’t have to ask but people just do it – go to appts, bring you dinner. I’m learning to accept anything someone wants to do for me because I don’t want to rob their blessing. My college roomies just paid for me to join them for a week in Newport RI – paid for plane ticket, lodging, food and fun.
I think that the “fight and win” pink of October has people thinking we’ll get through this. OR that Stage IV means you’re dying right away. I think people are just uneducated, and I don’t blame them for not understanding. if you haven’t walked the road, you don’t know. At first, I would try to educate people about what this means – stage iv metatastic. Some want to know and understand, others don’t.
I want people to know that we all have limited time here on earth. This life is so short for us all and this is not what it’s all about. So if this starts to progress on me, I don’t see the need to pay thousands of dollars to stay here. Even with insurance, I get overwhelmed with the cost of treatment. It doesn’t make sense to me to leave my family in debt or bankruptcy over this. I know where I’m going and I know it’s a much better place. So today I live, love and laugh.
If you would like to share your story with our “Voices of MBC” community, please contact me using the form below or email me at Lkailani@gmail.com
I can’t emphasize enough how important it is to let our voices be heard. Your story counts and could just help make a difference in someone’s life today.
Until next week.