Updates
March 11, 2024
Penn Medicine Breast Cancer Retreat
I was honored to be a part of the Breast Cancer Retreat Program at Penn Medicine. It was so exciting to see how dedicated the entire staff of Penn Medicine is to improving treatments, patient experience, and making sure Penn is one of the best breast cancer centers in the world. Sitting on this patient advisory board was such a privilege. I hope my ideas can make the Penn experience even better!
Lehigh Valley Breastfeeding Coalition Conference
Telling my story of delayed imaging due to lactation status at the Lehigh Valley Breastfeeding Coalition Conference was such an amazing experience. The dedicated lactation specialists in that room made me feel seen and asked so many great questions. It’s so hard going through diagnosis and treatment for breast cancer but it’s even harder finding out women are still being denied imaging due to lactation. We are going to work together to make sure this stops happening.
January 1 2023
The last two years were hard. I battled breast cancer and my life changed in so many ways. I went from feeling comfortable with the idea of time to feeling weighed down by the pressure of now. I faced some of my worst fears. I sifted through my experiences and gained perspectives about who I was and what mattered to me. I was humbled and supported. I understood human nature in new and intimate ways. I was treated by everyday heroes. I was supported by loved ones but also forgotten by people I once loved. Strength is something we are forced to embrace in moments such as these. Being positive helps us get through the worst of what we all face every day. Hard days come for us all and we all get through them the best we can. I will always be grateful to anyone who reached out to tell me that my life mattered to them. Your lives matter to me too. All of us matter. I hope this year we recognize the importance of how we treat one another. I hope we’ll learn to speak to each with understanding and kindness. I hope we can stop pushing people down and we will learn the value of supporting each other as we all muddle through this world together. Our world doesn’t need more negativity, it needs more love, understanding and acceptance. We need to open our hearts and minds. Life is too short to fear things we do not understand. It’s too short for grudges. It’s too short for cruelty. Life is a gift and every year is a chance to get better. Believe in who you want to be. Believe in the future.
Sending you love today and every day.
Happy New Year!
February 3 2022
Chemo number 7, over half way through! Today I began thinking about all the people who have made treatment possible for me.
Dennis Slaman MD fought so hard to bring us all Herceptin. Before his invention women with Her + received a grim prognosis.
I think about Taxol (paclitaxel), originally derived from the bark of the Pacific Yew tree. The beginning of the story was way back in the early 1960’s when the USDA sent workers out to collect samples from 35,000 plants to investigate medicinal potential. Amazing to think they looked at SO many and among them, the bark of the Pacific Yew came to light as a cancer fighter. It was work by Mansuker Wani and Monroe Wall in 1962 that made this discovery possible. It was not until 1977 that Dr. Susan Horowitz was able to define the mechanism that the bark extract used to halt cancer growth.
YEARS of research, likely dozens of doctors, lab assistants and institutions worked to give us a usable treatment. One difficulty that arose that while the bark extract was promising for cancer therapy, the tree itself is slow growing and removing the bark would kill it. Eventually, more researchers found that precursors of Taxol were found in the needles of the more common Yew plant and those precursors could be used to chemically synthesize the active drug Taxol.
Marrie Curie had to seek education illegally and was denied a teaching job because she was born a woman. She was the only woman to receive two nobel prizes in two different fields of science. Marrie Curie gave her life to contribute to millions of others when she and her husband discovered the potential of radiation.
Curiousity. Diligence. Perseverence. Compassion. Dedication. Precision. Hope. Success.
We are not alone. All of us have an ARMY of humans fighting the fight with us. Simply miraculous. Millions of people working in the health field saving us. Dealing with the worst of us with a smile of their faces and no sleep. I will forever be grateful for scientists, researchers, and health care professionals who made it possible to treat cancer.
I wonder if that one USDA worker that sampled that first Pacific Yew ever knew the impact that act would have? I hope they do. I am eternally grateful.
I am also super excited about these new massage chairs! Feeling fancy!
October 25 2022
So far my second AC Chemo was actually a little better than Chemo #1. I still have terrible indigestion, headaches and heartburn but I know what to take for it now. I know what things I can eat to help prevent the worst of it. I know when I should and shouldn’t take meds and what meds help. I’m still nauseous, weak and tired but I know if I go for a walk it will help sometimes.
Colin had a stomach virus and spent all day in the ER yesterday. Luckily, it wasn’t his appendix but it was likely viral which is pretty scary for me since I’m immunocompromised now. We tried to keep him away from us but Ali is impossible to keep away from him. I’m loading up on electrolytes to prepare and hoping for the best.
Charles gave me a cool half shaved hair cut before my runway walk. It’s growing on me but he and Alistair love it. Colin tells me he loves me no matter what my hair looks like. Speaking of hair, it hurts now but Ali asked me to leave my hair for one more day before we shave it off because he likes it so much. The follicles get sore and I’ve found sleeping in a velvet turban helps quite a bit. Satin catches the little hairs and hurts them when you move, velvet keeps it from moving which is really the best way to keep it from bothering you. My skin is insanely dry, despite drinking a gallon of water a day but it still looks pretty good. I’m using mouthwash and brushing after every meal to prevent ulcers but I always have a few. It feels like they are always waiting to start so I’m very careful about what and how I eat. I hope someday this information helps another person going through this, I wish I’d known it when I was caring for my Mom. What toothpaste and mouthwash to use really matters. Not eating acidic things helps. Not having coffee helps too even though I miss it so bad.
This is just the beginning of a long few months of chemo. I met so many inspiring survivors at Penn Medicine Breast Reconstruction Awareness day, I hope to contribute like they have to the cancer community somehow. My beautiful pink sisters there couldn’t believe I came to be in the run way show after my first AC chemo, they all cried and offered me words of encouragement. I don’t have much to offer but my experiences and hopefully it will help someone. I’m trying to find the energy to make some more videos but enjoying painting and knitting a bit more than making content at the moment.
October 20 2022
My birthday was amazing! I was one of twelve models at the survivor celebration of life fashion show (Breast Reconstruction Awareness day) and walked the runway at the medical museum in Philly. It was wild. I got there and realized I was modeling underwear! It was pants and a bra with a shrug thing. I was so confused until I realized there was no top but I did it because I said I would. I was honored to be a model of an actual bra designed by a 12 year survivor with breast cancer survivors in mind. It was a very touching wonderful event. They had a big birthday cake made for me as a surprise and the audience sang happy birthday. I got to see both my surgeons again. The audience was Penn Oncology, Penn Plastic Surgery, survivors, family and friends.
I hugged my surgeons and thanked them profusely for the wonderful jobs they did. I tried to wear my mask in close proximity but thankfully my white blood cells were up for my birthday! I told them I would be thankful for the rest of my life for the work they did and continue to do. I met the head of oncology and the head of plastics at Penn and they were so kind to me. All the survivors were out of treatment and couldn’t believe I was 10 weeks from DIEP and about to do my second chemo. Everyone cried, hugged me and encouraged me they understand what I am facing. It was an unbelievable night with catered food and gift bags. My best friends in PA cam and brought me flowers. The marketer of the event told me she would love to help me help more people with my youtube channel. I am so thankful to have a project to work on that can benefit someone else. This experience is not an easy one and if sharing it can help even one person, it is worth every effort on my part.
Then the next day and got my AC (red devil) chemo # 2 done. After chemo, I took a mile walk with my family and went home to rest. I hope I’ll continue on this way, I try to force myself out of bed and stay active for my family and myself. I know I am carried by the fierce love of my friends, family and pink sisters. It gives me energy when I need it most. Every adventure begins with a challenge and this is one of mine, thank you for walking with me on my path. I love you all more than words can say.
October 7 2022
Update after my pathology report. For anyone following me for that information, I had a positive lymph node. This moved me to Stage 2A and decreases my prognosis by about 10 percent. Luckily, with Chemo and endocrine therapy, I can push it back into the 90s. The other issue being debated is my Her 2 status. St Luke’s and LVHN who looked at the original biopsy tissue defined me as Her2 +, while Penn Medicine defined me as Her2 -. The final surgical pathology on the entire mass and lymph node at Penn Medicine agreed I was indeed Her2-. I decided to receive my chemo at LVHN and the pathologist reevaluated all the various studies and believes I am heterozygous. This means a bit of both. It also means I may receive additional chemo and Herceptin after the AC (red devil) treatments. Both Herceptin and AC can damage your heart so they don’t like to over treat. My oncologist and I are seeking a third opinion and perhaps a fourth if we still have questions. Right now we are planning for the Herceptin because the chances for heart damage are low and if it is Her2+ that means the chances of it coming back are high without Herceptin. I have been sending my oncologist question lists and studies to discuss. Also fun coincidence he is actually my Plastic Surgeon, Dr Kanchwalla’s friend and neighbor.
Speaking of Dr. Kanchwalla, he found my youtube and called to thank me for sharing my honest account of his procedure. He nominated me to be in a survivor runway show for a fundraiser at Penn Medicine called BRA day. It will be on my birthday Oct 19th. Now I just need to find a wig and hope I’m feeling better by then.
I had a busy week with the port install Monday. On Tuesday echo cardiogram, my nurse teaching appointment and Wednesday was my first Red Devil infusion. Today, I get an injection to help my immune system. Tomorrow, I plan to shave my hair into a fun cool style (It should be gone in about two weeks). So far nausea has been my biggest issue. If I am not responding as often to texts or reaching out, know I still love you but I am trying my best to rest. I’m thankful and appreciate all the love and care I receive.
I didn’t get a picture of the chemo but below is what a port looks like if you ever spot one in the wild. Who knew welcoming something called the red devil into my veins could be a life saving thing?
MI-DIEP step 2 Week 2
VIDEO UPDATE
August 29 2022
Mi-DIEP step2 week 1
August 16 2022
Home from the hospital again. This operation was a doozy. Getting mobile again is a bit more challenging but my nurses at the hospital said they were amazed at my progress and strength.
They had to check my tissue every hour to make sure it wasn’t rejected. I had to ask for help to detach from machines every time I needed to pee. I was on pain killers, nerve medicine and anti nausea meds and my stomach was a mess. Doctors came and went, teams were in and out checking my tissue. I wasn’t able to sleep much. Physical therapists came to work with me every day and they mostly got in my way. The pain and tightness I had in my arms from the masectomy is almost completely gone. Now the incision from hip to hip and the stomach pain are slowing me down. I am committed to resting when necessary but have already done more than I should every day since being home.
When I left the hospital my nurses all came to say goodbye. They were so kind to me and told they knew I would be okay. They said I was so strong, brave and positive I had been a ray of sunshine while I was there. My night nurse Tori told me I reminded her why she became a nurse. She said she would never forget me and I had to take care of myself because I was worth it. I reminded her to do the same and we both cried and told each other we loved each other. It was very emotional and wonderful. I felt so special.
Yesterday, I sent the nurses donuts on that floor as a thank you and the nurse who answered took my message for them all. I told her I wanted to thank them all for saving lives everyday. I wanted to thank them for all their hard work and love they bring to work every day. She said they never get gifts like that and it would be so appreciated and I said well you all deserve more and hung up before I got too teary.
Every day I am feeling a bit better but it’s much slower than last time. So much of it is learning what works for my unique anatomy and finding ways to accommodate myself. My pink sister Merri has given me the best recommendations. She has been my DIEP mentor and I am so thankful my pink sister Angel lead me to her. I want to share that with others in my place. I thought I would check into a mentorship program for reconstruction to see if anything in our area exists like that. In the meantime, I need to update my youtube now that I’m able to have the energy to do an update.
The kids have been trying to be good but I am very concerned that Charles is going back to work Thursday. Almost everything I eat is a gift from a kind hearted friend. My friends Jessica, Erin and April brought me food to eat this week and a friend I’ve never met is bringing me food tonight. My friend Erin in going to come over for a bit and help entertain the kids on Thursday. On Friday my friend Meg is helping too and tonight my friend Dawn is coming to teach me to knit. My heart is full and my body is healing and filled with love. The support I have is something I hope to give back someday. Until then I am reminding myself, I would do the same for them so I can accept it. I remain humbled and I feel so loved. I almost can’t believe how surrounded by love I am. I feel wonderful even though I am in pain.
July 29 2022
At home today, I finally took a shower and it felt less comfortable and more difficult than I imagined but I suppose it will get better as we figure out how to manage my drains in the future. Charles had to wash my hair and gently dry me off. I finally understand why my kids hate letting us have that much control over them. Note to self: teach kids how to shower themselves. Everything right now is a wrinkled mass of bruised skin with wires and tubes sticking out. I don’t care too much about all that but I do hope to be able to hug my kids again soon. The kids feelings morphe from being upset I am hurting to forgetting and bounching around like crazy animals.
I posted another video journal and find it easier to talk to the camera than write at the moment. I don’t think many people are following me but if it helps one person, it’s worth the effort.
July 28 2022
I was too tired to type but my update can be found on my youtube channel. I’ve seen others do updates and they all look fantastic but I’m past caring about how I look at the moment. I just hope it helps someone considering Mi-Diep.
July 1 2022
I have a surgery date!
With Penn Medicine!
Step 1:
July 27
Remove all breast tissue put in tissue expanders and fill it with air. Close blood vessels in the tummy to prepare for transfer.
Hospital stay one night
Recovery from double mastectomy will probably continue into the nexy surgery.
Charles will take one week off to help.
Step 2:
Surgery date to be determined but must be 2-4 weeks from first surgery so probably late August or early September. Blood vessels are stronger and ready for transfer. Remove stomach tissue and reconstruct breast. Remove expander and place tissue from tummy in breast pockets.
Hospital stay 3 days
Recovery 3 weeks
Charles has me first week
Hopefully one of my best friend from NC can come stay with me the second week.
Step 3:
Fat grafting and additional implant if necessary.
Outpatient surgery
One week recovery
This procedure is called Mi-DIEP it is a revolutionary reconstruction process developed by one plastic surgeon at Penn Medicine, the first hospital in the nation. Penn Medicine does more DIEP flap reconstruction than anywhere else in the country. I wish my surgery date was sooner but I keep reminding myself that it is the best place for me. They also have the only program in the nation developed to track patients and try to prevent recurrence. This also enables me to access research studies and after I have surgery, I plan to consult with Memorial Sloan Kettering about my oncology treatments.
Moving away from all of my family and friends to come to PA was hard but I am thankful to be in the best place for these life saving and life improving treatment options.
This is my procedure.
JUNE 10 2022
I went ahead and cut my hair short to help get everyone used to it. First, I cut my own hair super short and decided to get it done at an actual stylist. Alistair handled it great, he actually liked it. Colin says he likes my hair longer but it’s okay. I’m so glad I chose to do it. I made me feel better to get it over with. It’s also much easier to keep from getting painful once I do start to lose it and prevents ingrown hair. I actually love how it feels and how easy it is.
June 12 2022
This week was a busy one. I had my MRI on my lower extremities to make sure I was a good candidate for DIEP. I met with an award winning surgeon Dr. Dahlia Satalof at Penn Medicine to discuss the various diagnosis and treatment plans that both of the major hospitals here felt were best and to receive her expert opinion.
She felt more testing was in order. She sat me down and showed me the Mammogram slides and explained that in the left side, I had a grouping of calcifications that appeared suspect. They were not biopsied by LVHN. The surgeon and my care team at LVHN again refused to order an MRI and biopsy stating if they found anything during surgery they would change my staging and treatment plan then. Which made me nervous and caused me to seek the third opinion.
Dr. Satalof explained that if the scans and biopsy indicated more cancer, that would mean a much stronger chemo therapy plan and radiation should be administered first. I would have surgery after chemo. She also felt I should be tested for a bleeding disorder before I had surgery because I am a carrier for Hemophila C. She personally called around to make sure I got appointments while I waited in the office.
At this point, I feel I am in the best hands I could be in. It will be harder to commute to Philly for treatment and cost more because Charles will want to stay in a hotel close by while I have surgery but now I have access to ground breaking care. I will be having DIEP reconstruction in the most advanced and well trained DIEP hospital in the nation. They have new microsurgical procedures and research studies there I can take part in. I already signed up for one which studies exercise and it’s effects on surgery and prognosis. I keep trying to remind myself if it were my Mom, this is where I would want her to be.
May 23 2022
Today, I went to visit a plastic surgeon to discuss reconstruction options. I wasn’t expecting it to get to me. I think the financial paperwork was intimidating so that sort of reminded me of some of the stressful things I try hard not to dive into. I guess we need to take out a new credit card to pay for all the extra fees insurance might not cover. Charles and I discussed getting divorced in case we couldn’t pay for all the charges associated with reconstruction. I don’t want to have to reschedule once I finally get surgery scheduled. I shouldn’t have to worry about this when trying to survive is stressful enough.
This waiting is so worrying.
We spoke about implant reconstruction and the risks. I knew I might not keep my nipples and that was not a big surprise. I don’t really need them anymore. I think what got me was her candidly saying they will not look the same again. I knew that but I guess hearing it was a little scary.
Survival is the important thing. I know losing my breasts shouldn’t be a huge deal but it made me reconsider my surgery decisions. It made me wonder if reconstruction was even what I wanted. How I look matters to me but why?
I was just starting to come to terms with aging and the loss of my youth. I felt like I was finally living up to my potential for the first time in my life. I wasn’t ready to get old. I was in my Prime. I devoted my whole youth to my Mom and I devoted the rest to being a Mom myself. I felt like I could finally devote all that love and energy into my career and community.
Now, youth feels like a band aid about to get ripped off. Why am I resistant?
I suppose it has something to do with the uncertainty. My Eight year old is asking me more questions about cancer. He is worried about me and asked if I would get the same kind that killed my Mom. I told him I don’t know but I hope not. We talked about how important it is to try and remember to enjoy life while we can. We also talked about how hard that is sometimes. I wish so damned much I could tell him I would be fine. Instead, I tell him life is hard but we have each other and the best we can do is appreciate it. That’s what life is all about. I love my life and I love my family. I’m grieving a little for the loss of this small part of who I am and the battle I am about to take on.
Yesterday, I received a call to tell me the MRI wasn’t in network and the out of pocket cost would be much higher. They said any other location wouldn’t be available until the end of June.
I went to LVHN to meet Dr Lori Alfonse and walked passed the bell you ring at the end of treatment. I dreamt of the day when I could do that and thought about all those who never got the chance, like my Mom. I meet with Dr Alfonse. She and I discussed the idea of doing additional testing. Dr Lori said MRIs are unclear and not a good way to look at breast tissue and they prefer to do them around 5 days after your period which brings me to the end of June for testing. Since I am doing a double mastectomy she feels anything of interest will be found in the biopsy and if they found anything in the nodes they would have to go back in anyhow. It also often means additional testing, extended wait for treatment time, expenses and they tend to be of little help to her as a surgeon. We both agreed that when she operated on me, she could take sentinel node samples to make sure I am cancer free on both sides.
Decisions
May 19 2022
We also discussed removing my ovaries. I’ve been researching tamoxifen and noted that aromtase inhibitors tend to work better to prevent recurrence and have less side effects but can only be prescribed to women post menopause. She told me I could have that done and it would also decrease the chances of spread and recurrence. I would also be able to get the inhibitor instead of tamoxifen which is known to be poorly tolerated. She wanted to let me know sometimes hysterectomies cause bladder issues but they have great surgeons who can deal with that if it happens.
I decided to move forward with her and choose the team at LVHN. Next week, I meet with two plastic surgeons to discuss reconstruction. I also found out it’s covered by insurance so that is great news.
I try not to think too deeply about how much I’m going to age but Dr Lori did admit they would be aging my body about ten years. Just last month, I was worried about my neck getting wrinkles and now I’m going to be forcing my own body to age ten years. I wish I had more time to embrace aging gracefully but I suppose time is what I am fighting for.
They sent my the Cancer Care package today and it was depressing. It has a sheet for how to deal with sleep loss, painful intimacy, chemo brain, and about ten other sheets and books for your partner, you and your children. It came with eyelashes, a bedazzled head scarf and warm socks as a reminder of what awaits me. I’ve been researching everything and it seems like there are so many decisions I don’t want to make but I know I should be happy to make them because it might mean one more day with my boys. It reminds me of when Colin was a toddler, I always gave him choices but the choices were always things I wanted him to do. One day he started yelling at me and he said, “You never let me pick good things, only bad or bad things.” I am feeling that deeply today.
Today, Alistair graduated from preschool and I watched him sing with a bunch of other adorable 4 year olds. I thought about how beautiful they all were and how thankful I was to be there. I let him go without a mask even though I don’t want to miss any appointments or surgery because I figured surgery would be about two weeks out. Kids and adults were sneezing and coughing all over the place. I hope I don’t have to cancel anything because I wanted to see his face during his prek graduation ceremony.
A close childhood friend told me she published a go fund me for my medical expenses as well. Another kind friend set up a Colorstreet party for me. I’ve been crying off and on all day about that. I feel so many things. My Mother raised me to believe that you never ask for help. You help others. She believed it was wrong to accept charity but these medical expenses seem so much bigger than me. They worry Charles and can impact my children. I remember when Mom was dieing she felt terrible about letting her friends help her. I always told her when she let her friends help, she was helping them too. Our loved ones want to help us. I remind myself of that every time I get overwhelmed and it helps me swallow my tears and move on.
I finished the day with a closing and it was wonderful to know I was a part of another family’s story. Especially a family so dear to my heart. It’s also scary knowing I won’t be able to work for the summer.
All these things are like monolithic beasts whose shadows rip entire civilizations from the pages of history. I feel like a tiny speck of sand bravely making a stand before a tidal wave. I know it’s coming for me. I know it’s going to be hard and it will change me but I will still dance and call it rain.
May 16 2022
⭐ Cancer update and Childcare recommendations ⭐
I have some great news! I tested negative for all the genetic breast cancer genes that are currently known, so the Doctors say this means I am at no increased risk of other cancers nor are my children. This also means I can proceed with treatments with no concern for any additional surgeries besides breast surgery. The oncologist was very positive and said I am stage 1A which means they believe my cancer has not spread to the lymph nodes. They will not know that for sure until surgery but as of right now the prognosis is very good. He said if they do not find any surprises during surgery, statistically they have a good chance of curing me but this year is going to be a hard one. I feel better knowing math and science are on my side! I am also humbled knowing that not everyone has the privilege of a diagnosis like mine. I am thinking of all of my Pink sisters and hoping for the best for them as well. I am so thankful I got my Mammogram when I did. It may have saved my life.
I have triple positive cancer which means they can starve it and try to prevent recurrence. I will have a double masectomy with immediate reconstruction and when I am well enough, they will begin chemo Taxol (chemo) and Herceptian which is a HER blocker once a week for 12 weeks. Then, I will remain on Herceptin for the rest of the year and hormone blockers for five more years. This year is going to be tough but I am strong and stubborn. I am determined to keep a smile on my face and find a way to enjoy the summer but I know I need help.
I thank all my amazing friends for their support and help. I have always been the kind of person to refuse help because my Mother raised me to believe accepting help is a weakness but I know some things are bigger than me and my ego. I cannot in good conscience ask any one of my closest friends to help more than they already have because they already do so much.
Cancer is so expensive. I’m a Realtor and I can’t work woth buyers due to the physical demands of traveling all over and showing homes while I’m in recovery. Now we have to worry about childcare expenses because my husband has to work on top of the mountain of other debts about to start rolling in. I have agreed to give my friends an idea of what my needs might be during my fight so they can help me with my daily struggle. I have also told a childhood friend she can create a go fund me for my medical expenses which is really hard for me but medical expenses shouldn’t be almost as stressful as cancer. Being vulnerable is scary and difficult. Without family that can help, I am dependent on the family I’ve chosen for myself.
I love my friend family in PA so very much. I want to let every person who reached out to me know I appreciate you. Life is hard but it really helps to feel loved and supported. I want to say a special thanks to my friends who reminded me to get a mammogram and thanks to any one of you who reminds your loved ones to do the same. You may have saved my life. The things we do in life to help others don’t always seem important or worth the effort but they are. Something as small as a reminder can change the course of a person’s life. You may never see it but you could be saving someone like me.
May 17 2022
Today, I spoke with a breast surgeon named Tricia Kelly from a competing hospital called St Lukes. I have breast cancer on my right side and Lobular Carcinoma in Situ on the left which is not cancer but means I have an increased risk of having cancer. Dr Kelly told me she felt the left side of my breast also had some suspicious findings called asymmetrical dense breast tissue that she wanted to do more tests on. Which is scary. She also let me know they got a sample from my biopsy and were doing their own staining to confirm what type of cancer it is because it has both lobular and ductal features in histology. It won’t change the prognosis or treatment but it would clarify what to look for. She said her radiologist suggested another biopsy and an MRI. She told me that even if I wanted a Double Mastectomy, she would want the MRI to see if lymph nodes on the left side might be involved. They could biopsy the breast tissue after removal but taking samples of lymph nodes wasn’t easy or good to do unless it is suspicious. They scheduled me for an MRI and it’s not until May 26th. She said after that they can schedule surgery if their oncologist doesn’t want to do chemo before surgery but she said because they also think it is staged at 1a she thinks the oncologist will agree with surgery first.
Then, I spoke with LVHN again and asked if they wanted to do a biopsy or an MRI on the left side and they said the care team reviewed the lab report, tissue and mammograms but decided an mri was unnecessary. She told me to ask the breast surgeon, she also let me know they normally like to do breast MRIs about 5 days after your period and if they waited to do that for me, the timeline would be longer than they like which I absolutely with.
So my choice is to get it over with ASAP or get additional testing. I’m not sure where to go from here but hopefully the Surgeon Lori Alfonse from LVHN can help me figure it out.
A good childhood friend set up a beautifully written and thoughtful go fund me for my medical expenses. I sat in my hall way after I dropped off Alistair at preschool and cried a little. I’m trying to figure out how we’ll pay for all of this without help but it seems so overwhelming. I have a closing coming up soon and I’m excited to bring in a little income but I’m afraid of not working for a few months. Medical bills are piling up and though I try not to think about it, I know Charles is worried and that makes me sad because he has enough to worry about.
To keep my mind off of everything, I worked on setting up an email and you tube channel so I can begin to share my story and recovery in an effort to help anyone else going through this. I did some kickboxing and tried to think of a way to do it low impact and without my arms. I want to find a way to maintain my muscle after surgery. I need something else to focus on. So I thought about how I should do workouts as I recover and do a day after video to tell people how it might feel or what ways to modify it if they are sore and prevent hurting themselves after recovery. It made me feel good and I moved on with my day.
May 5 2022
*Update*
I have ER+ PR + HER + also known as triple positive breast cancer which means I will be immediately doing one year of Chemo along with targeted HER blockers, endocrine therapy and surgery. They hope is to cure it and keep it from coming back. It’s going to be a very hard time period in my life but I hope it buys me some golden years. I will not be broken. Life is short and I intend to appreciate every moment. Even this struggle is a blessing because it means I get to watch my little ones grow.
April 22 2022
Get your mammogram. It could save your life.
I take pride in helping others while never revealing my own vulnerability. I have never liked to share my personal struggles because I prefer to handle them on my own. The idea of anyone feeling sorry for me makes me feel guilty because the world is hard for all of us. However, I believe helping others is the true meaning of life and if this story helps even one person, it’s worth sacrificing my pride and privacy.
My mom was diagnosed with breast cancer in 2008. I decided to move back in with her during this time in her life and was able to help her throughout her treatments. I was with her through every step of the process. Anyone that knows me well has probably heard me say, I knew someday I would most likely get breast cancer. I’ve always said that if I ever found out I had cancer, I would immediately get both breasts removed and reconstructed. My OBGYN told me two years ago I should get genetic testing done but I put it off because I didn’t think I was ready to face the possibility of double mastectomies, which I worried might be looming in the future. I spent years after mom’s diagnosis reading everything I could about preventative steps. I had all the risk factors. I was hoping breastfeeding would buy me time but it seems cancer came for me faster than I ever could have expected.
When I had Colin eight years ago, I started developing chest pains. The doctors told me I was having “tension pains” and I remember my mom sharing with me she had experienced them as well. It feels like a stabbing pain in the center of my chest. My mom also had them in the same spot. I did extended breastfeeding with both of my boys and during that time period I was advised not to get a mammogram because breast tissue changes so much. I attributed the pain I had to breastfeeding.
When the pandemic began I had intended on weaning Alistair. He wasn’t ready though and we wound up waiting until this year. I knew breastfeeding helped prevent breast cancer and knew that it gave him antibodies. So I thought why not continue. I got very tired of it but it was a sure fire way to get him to sleep at night and I thought I was making the right decision to continue on because of the many health benefits.
Putting off my mammogram seemed like something minor. Not too important. In the fall, I started getting chest pains again. Pains that would wake me up at night. Yet I couldn’t find anything when examining myself that felt especially concerning.
When I finally got to the clinic for my chest pain, it was January. The PA I saw told she believed my chest pain was muscular. At this point she felt the most beneficial course of action was to wean and move forward with scheduling my mammogram. I was glad to have an excuse to wean because by this point I had been breastfeeding for a very long time.
I was told I would need to have stopped breastfeeding for 6 months before I was able to get a mammogram. Because of my mom’s history I went ahead and took the first available appointment 2 months after weaning. The moral here? GET YOUR MAMMOGRAM!!!! If I had gotten mine while I was still lactating they may have found it earlier. Follow your intuition even if the doctors tell you that you don’t need one or can’t get one. NEVER delay getting your mammogram. It could save your life!
My story with more details continued:
My dad died at the end of March and we got COVID at the beginning of April. It was terrible and I’m so thankful that Charles and I were both vaccinated and boosted. I tested negative just in time for my first mammogram. It came back “abnormal” the same day. I went back a few weeks later. That was the first available appointment. That came back abnormal as well, with a radiological rating of Birad 4 on the left side and Birad 5 (95%chance of malignancy) on the right with a mass around 1 cm.
At this point I’m researching as much as I can! I’m trying to set up genetic testing, attempting to get things done around the house to prepare for surgery, preparing for backup at work, telling my closest family and friends. I didn’t know what the timeline was supposed to look like and I had nothing but the internet and previous experiences with Mom to inform me.
I was scheduled for my biopsies 4/25. I was terrified about the biopsy pain but I barely felt a thing! The pathology report was delivered digitally to me that same night. The diagnosis was favoring Invasive Lobular Carcinoma in my 1cm mass and Lobular Carcinoma in Situ on my left side. I’m thankful I knew how to read it and I was able to get some answers quickly due to my own research. I can’t imagine how anyone else would have handled it considering no one called me to discuss the findings.
They still had more tests to run and I assumed that was why they didn’t call me. However, I didn’t hear from any doctors at all over the next few days. It was very disappointing and it made me feel that my doctors did not care about me. I called the hospital, sent my General Practitioner and OBGYN messages. A nurse would write back to answer my questions. My GP referred me to a genetic counselor through MyChart per my request so I could set up an appointment for genetic testing.
Considering the testing might be something that would help me make decisions regarding treatment options and surgery, I thought it best to get it on the schedule ASAP. All the while, I’m wondering why no one has called and why they didn’t prioritize getting me in faster.
My biopsy site check was scheduled for the 28th. The Hospital did not check my site but used it as an opportunity to introduce me to my care team at this appointment and they gave me two options: talk with a surgeon ASAP or wait two weeks to speak with a panel of experts about the best possible ways to move forward.
For anyone going through this in the future, I felt sharing this process might help you understand how it all works. The doctor and my care specialist assured me that my cancer, which is tubular, tends to move slowly and rarely spreads, which enabled me to make the decision of waiting to see my team of specialists on May 13th. It’s a way to get a “second opinion”. I am still concerned about waiting for any amount of time because now that I know it’s there, I want it out of my body. I have since learned through the internet that a reasonable timeline for double mastectomies is around 40 days after diagnosis for ductal carcinoma.
They also told me if I had a more aggressive form of cancer, I would have been put on a “priority” list and they would have pushed my appointments to the forefront of scheduling. These are the procedures and standards of care with Lehigh Valley Health Care. I am spending today getting referrals for St Luke’s in Allentown so I can consult with them as well. I am very thankful I have two big hospitals to choose from here. I’m also considering using Memorial Sloan Kettering in NYC.
We have no control over how we come into this world and sometimes even less control over how we leave. All we can control is what we do while we are here. I intend to win this battle but the fight to live every moment to its fullest is part of every action I take. I know I am very lucky to be here. I’m lucky bombs aren’t falling from the sky above me. The idea that we ever got here at all is miraculous and it never fails to amaze me. Every second we get in this life is a blessing. Every wrinkle is a kiss of good fortune but it’s hard to see that all the time. That is the hard part of most people’s daily struggles, including mine.
I hope at this place in your life and at this same moment in mine, we are all able to give ourselves the grace we deserve. I hope we can forgive ourselves for the moments we get wrapped up in stress, anger, fear or sadness. I hope we can encourage ourselves when we are able, so that we can hold onto the happiness of the present moment and appreciate our own humanity.
We are all doing our best. We all have personal battles and every one of them matters. Give yourself a hug from me today. We’ll get through this together!
I want to share my experience with the hopes of helping my friends and family. May it serve as a reminder to you to take your mammograms seriously! Remind your friends and family to get them. It could save a life. It may have saved mine.
I plan to make updates for my friends and extended family on Facebook to make it less cumbersome moving forward. Please feel free to reach out to me individually if you wish to. I love you all and I am hopeful that I got it early. It’s a nightmare to get diagnosed with cancer at any time in your life but it’s a good thing to find it so you can seek treatment immediately.
If you are going through a breast cancer diagnosis. I cannot recommend this resource enough. I am the kind of person that needs information to get through daily life but especially through crisis. This channel will guide you through the typical timeline and answer questions you didn’t know you had.
Breast Cancer School for Patients