Radiation Scared….

So I just left my Radiology Oncologist’s office. His name is Dr. Muller and he’s a graduate of MD Anderson. He’s a phenomenal doctor and he takes time to explain and really to over things with you…. So, my radiation actually turns out to be the worst case scenario for ME…. and so today’s visit was eye opening and quite scary. I really wished my husband had been able to be with me to hear all he had to say…. but we’ve been so sick here and he’s had to take off work, so he couldn’t be with me.

Because my lymph nodes had extracapsular extension…. meaning that the cancer was trying to get beyond that lymph node… it could mean that in my other lymph nodes that there may be microscopic cancerous cells that could carry through my lymphatic system and land somewhere else to brew a new tumor…. This is what we’re trying to avoid. So… he wants to radiate all of the lymph nodes up my neck and the mammary lymph nodes in the chest wall, as well as the chest wall….

I asked him what my prognosis was…. after all this. He did not want to give me that number. He said… what I will tell you is it’s not zero…. and it’s not 100. He explained that there is a tail at the end of the chart…. Many people will die from breast cancer… but at the end of that chart is a tail and that tail comes up and it shows that the people who survived after all this was over… He told me, I have no reason to believe that you won’t be in that tail of people. He then told me he could give me those statistics… he’d be happy to print them off. And I graciously said…. “No…. thank you for your response. I do not want to focus on that number.” So….

The problem is…. my cancer is on the left side. My heart is on the left side and unfortunately he said they don’t have a lot they can do to protect the heart. My radiation will be a specialized case he said… they will have to do some extra things to me and for me to try to protect my heart… He said and example is taking a deep breath, it puts air between your heart and chest wall.  I could end up with heart disease, narrowing of the arteries or heart attack. I would suppose worst case scenario would be heart transplant….

There are other risks… my ribs will be very fragile on that side…. so things like leaning against a pool wall or a big bear hug could snap my rib and it’s very painful and there is no treatment….

When I was there, I had the chance to ask him about the question I had with the MRI and it not detecting the lobular cancer in my breast. His response does make sense and gives me a little peace of mind…. He said… The tissue of the breast is dense and fibrous. Lobular cancer is dense and fibrous…. so within the breast, the tissue and the lobular cancer resemble each other and look the same… so it’s hard to see. However, when it travels or lands in another part of the body… that tissue is different and the lobular cancer would then show up on those other tests…. because it’s a different background, so to speak…

We were hoping to make a beach trip this summer… we have a client who donated a week to us…. He is going to allow me to wait up to 8 weeks from surgery to begin radiation to allow healing. This puts us in July before I start radiation….. He told me I really need to do the beach trip before I start radiation because he said after… my skin will be…. essentially burned and I will be very tired and will not feel like being in the sun… So, he is going to send me my radiation schedule and between weddings…. we’re going to have to TRY to find some time that we SO desperately need to take a FAMILY vacation. We haven’t had one since 2011 and to say the least… it wasn’t relaxing, we had a family tragedy on that trip. So… hopefully the beginning of June we’ll be lounging in Myrtle Beach…

I have people telling me… I need to have faith, stay positive…. etc, etc. I’ve done more than a radical change with not only my diet but my lifestyle…. My mindset has changed 100% regarding life in general… My priorities are different…. My diet is radically different. I believe FULLY in the mind/body connection. I had HOPED that my response to chemo would have been that I had NO CANCER…. I hoped that my diet would have been enough. I’m going to fess up now and let you know that although I tried to eliminate sugar…. I did still have Agave Nectar and Maple Syrup and Honey. For ME…. I may not be able to have these in my diet at all to eliminate or stop the cancer from growing because cancer feeds not just on sugar…. but glucose and our bodies convert a lot of our food to glucose…. Since my pathology came back… I’ve eliminated all of those other sweeteners as well. This has resulted in a bigger weight loss…. which is bonus…. I’m probably thinner than I was in the 6th grade right now.

Anyway…. because I’m asking questions and because I’m bringing these things to the forefront…. does not mean that I’m LIVING SCARED…. It means I am educating myself to give myself the ammunition I need to fight this disease and make sure it doesn’t come back…. My radiation oncologist did not want to share the statistics with me…. because the reality is… It can kill me. But…. he said it is curable. It didn’t take 1 year to get cancer… it didn’t take 5 years to get cancer… Probably everything I’ve eaten and done to my body… the stress I’ve endured as a whole…. has contributed to my cancer. I neglected myself. It’s probably not going to take 6 months to make it all better…. The fact that the cancer was not visible on MRI should make me leap for joy…. well it did, actually… But the reality was, there was quite a bit of cancer left…. Too much for my comfort. I can’t be so confident to say… CANCER WILL NOT KILL ME…. But I’m gonna fight DAMN hard….. (I’m not one to swear… but, it’s warranted for emphasis)

He told me… to help myself… I need to:

Exercise

Keep a HEALTHY body weight

Elminate Stress

I am developing some lymphedema in my left arm. At this point it is mild…. but it can become a real big issue…. and I’m babying that arm. So can you imagine if I’d lift a camera all day long what it would do?

So, you know what I’m going to do???

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Sneaky Cancer… Lobular….

This is something I’ve been thinking about and we’ve been talking about today… and I need to ask my doctors some more questions….

Let me go back first…

April 2013 I found lumps in my breast that felt maybe pea sized and BB sized… my doctor could feel them. I had my Mammo and Diagnostic Ultrasound… I was told these were just cysts… Come back in a year.

November 2013… My breast had caved in… it was dimpling, my nipple was pulling inward… my cancer was flaming obvious…. On Mammogram and Ultrasound it was barely detectable…. ONLY because they knew what was going on did they know to really investigate that area…. MRI however showed what was obviously going on… several areas of cancer… in my left breast and the sentinel lymph node was involved… Biopsy showed a mix of lobular and ductal carcinoma…

Chemo pursued December – March…

My AFTER chemo MRI showed a PRISTINE test according to my surgeon, they were so convinced I may be cancer free based upon this test…. It showed NED (No evidence of disease)…. In the breast AND the lymph nodes…

My mastectomy was April 17…. The pathology revealed I had 8cm of lobular cancer that remained in the left breast… and 7 out of 12 of my lymph nodes had cancer in them….

So my question is…. In the future I can no longer have mammograms… not that they did me much good… How will I ever trust these tests and know that I’m cancer free? We all know that cancer can spread…. I feel confident right now that I’m cancer free…. I’m talking in the future. At my check ups…. when they order these tests… When they tell me my PET scan reveals NED…. or my MRI reveals NED…. Lobular cancer is very, very sneaky! It’s not detectable on tests…..

This scares me…

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Purpose…

There are times when I have struggled to understand what my purpose will be….. I attended a wedding yesterday, just 9 days after my double mastectomy…. for the sake of the bride who was just so devastated that I would not be there to shoot her wedding…. she was so extremely happy that I was able to be there for her! Her groom was so excited when he saw me and said… “she just kept saying she wanted you”…. In photography, it really has so little to do with the skill… well it does matter that you are an excellent photographer, but there are plenty of excellent photographers out there… What it really comes down to is the connection you have with your bride and groom! For this couple, we’d already done their engagement session and they had that level of comfort… and when their engagement session turned out amazing, they were devastated that I may not be there after my surgery… Our 2nd shooter kept asking… Is it that she’s not happy with my work? No…. it honestly has NOTHING to do with that or her skill… but more to do with the fact that I may not be able to be there. I told my bride… if my drains were out, I’d be there… even if for just a little bit…. I attended from 11-6:30… so other than reception highlights I was at least there to offer my input…. and from the sidelines without my eyes behind the camera, I can really focus on the little details… their positions, etc… I was able to really get them to come out of their shells and not be stiff…. to really evoke emotion. It was neat….

Anyway, so I’m sitting at the church yesterday in the back pews…. I’m watching my husband knock it out of the park…. and as the bride walks down the aisle, I have tears running down my face….. thinking about how I cannot photograph anymore…. and I’m watching the wedding and I just had this feeling that I should go talk to this lady that was sitting in the lobby of the church. She saw me…. and she invited me to come and sit down. She told me she was just diagnosed with breast cancer on Thursday and she is Stage III. I asked her how she is doing and she just said “I don’t know”… They’ve not been able to tell their children yet and she just felt like she was lying to them because they are wondering but she wants to tell them at the right time when they can be together, etc… When I expressed that I just felt compelled to talk to her, she just burst into tears…. I started to cry and we just hugged for what seemed like minutes….. I just kept telling her that this is NOT a death sentence and she will be just fine!!!! I can tell she is a very private person and she is one of the type of people that will be more inward… versus how I’ve chosen to be. It’s such a PERSONAL journey…. She just said “I don’t want people to pity me”…. I said… the people that love you will NOT pity you. If you take control of this thing and don’t allow it to keep you down, there is no way…. because life just goes on and to them you are still the same person…. and they will see beyond the cancer. After I talked to her…. I just had this feeling of…. something I cannot even explain. I felt like I followed my intuition and this is a relationship that is meant to be…. I’m meant to be there for her during her journey…..

And then I think about my purpose…. It’s not about me being a photographer anymore… even though I’m unsure what my path will be to make money….. my PURPOSE is to follow that intuition…. and be there for newly diagnosed cancer patients…. In a way of supporting them in an emotional way. I have a very calm, loving way about me…. and I think I bring a sense of calm…. I told her about ALL things I have done… with my diet, etc…. My purpose may only be to help this one lady….. but that is enough for me… The fact that I was there when she needed to tell someone who understands….. is just beautiful….. ❤

This is me with my beautiful bride J Leigh yesterday…

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Excellent Care…

88ed0a347be2b80459c53483e57d4f20I am so pleased with my circle of doctors at CMC… Levines Cancer Institute, etc… My primary is Marleen Traywick at Lake Park Family Practice… I trust her completely and if I have a question, I am lucky enough to have a personal link to her and I’m able to ask questions and express concerns. I know that most of her patients feel this same way about her. She actually listens to her patients…. She is an amazing caregiver. We are lucky in Lake Park to have her!

My surgical oncologist is Dr. Lejla Hadzikadic-Gusic. I loved her upon my very first consult. She spent at least an hour explaining, gaining trust and allowing us to have input on our direction. I also trust her completely. I’m so glad that I chose a woman surgeon, I feel like she understands and I felt like she was personally connected to my case. She was like the homeroom teacher in my care. She was the one I went to first…. and referred me to all of my other doctors. She just performed my surgery… literally 9 months pregnant. She emails with me at 10pm at night… she’s just unbelievable. I can’t say what my chest would have looked like without expanders… but with expanders from Dr. Clavin I’m just so absolutely pleased with my appearance… I feel she did an amazing job on my surgery and in my care in general… 

My oncologicst was Dr. Gregory Brouse and he was absolutely fabulous… very on top of my care. I felt like he explained things amazingly well. He is very, very emotionally connected and has tremendous empathy for his patients… Anything, I asked for… he provided. I absolutely loved him!

My plastic surgeon is Dr. Clavin… he was recommended by Dr. Lejla Hadzikadic-Gusic. I’ll be seeing him tomorrow as a matter of fact… I’m so happy with my expanders so far and I can only imagine how the end result will be… Dr. Clavin is cutting edge…. he practiced both in New York and LA. He is charming, has a wonderful bedside manner and great results… you can’t ask for better.

And, it turns out I will need radiation. My radiation oncologist is Dr. Mueller…. I really like him as well. He took a lot of time to explain exactly all the risks, the trials I could possibly participate in, etc…. but it turns out… I will not be able to forgo radiation…. Which I’m ok with… I expected it…. It prolongs this a whole lot longer, but…. it also means we are doing all we can to zap this cancer…

I’feel extremely blessed to have a truly amazing circle of care givers…. I’m so pleased with each and every one of them!!!

 

 

Pathology Report – The Good & Bad

I just got my pathology report…. We’ll start with the good news….

Right Breast:

No additional atypia, no additional cancer at all in the right breast

2 Lymph nodes were removed – both were negative for cancer

Left Breast:

8cm of microscopic lobular cancer remained – she explained that the way that a lobular cancer grows and spreads is like a web or crab grass and when chemo attacks it, it crumbles like a cookie but 8cm remained… (MRI showed a NORMAL scan) Lobular cancer is not easily detected on any testing. She did not say anything about remaining Invasive Ductal Carcinoma so I assume that chemo killed all of those cells….

She is VERY happy we did chemo first because she feels that if we hadn’t, I would have been upstaged…. and that my margins may have not been clear… Now they WERE clear!

The skin was clear of cancer and the nipple was clear of cancer

I am a Stage IIIA – Grade 2 Breast Cancer Survivor!

Left Lymph Nodes:

In all there were 12 total lymph nodes on the left side…

7 of those 12 had microscopic cancerous cells, so she is VERY happy she decided to take them all….

The first node the sentinel node had a 1.5 mm cancer tumor… consider that like the engine of the train with 11 train cars that follow…. each of the next 6 total lymph nodes had 200 additional cancerous cells… she said literally they were counting cells individually…. the last 5 did not show any remaining cancer…. which is wonderful…

She feels confident with my scans that they have tracked down and removed all of the cancer. Which is fantastic news! I will be monitored closely….

Radiation:

I will need radiation therapy which will be 34 total treatments to the breast…. I will be meeting with the radiation oncologist next week.

Reconstruction:

I have expanders which I am SO thankful for because it allowed me to not have to be concave and disfigured for the next 9 months or so…. the expanders look amazing, even though tiny and without nipples…. Over the next month they will be inflated to the size we are hoping to achieve…. and then some will be taken out and radiation will begin…. Radiation is typically 1 month following mastectomy… I will have to wait 6-9 months recovery time before reconstruction. I was hoping for implants after this recovery… because I worried that DIEP flap might be awfully invasive and hard to recover from…. but, implants may not be an option for me…. and DIEP flap may be my only option which means they will have to find fat on my body…. to make boobs from….. I’m hoping that with my diet and my multi daily application of Bio Oil…. that maybe my skin will recover well and we can try implants…..

Lymphedema:

My risk of Lymphedema is 30%…. she is having me elevate my arm any time I possibly can. I cannot lift anything for at least 3 years with my left arm. It already has swelling however from the elbow back to the arm pit, which is mild… but noticeable. I will be seeing her Friday to look at it…. Compression sleeves will hopefully keep this at bay… along with very careful babying of my left arm. I have to stretch it to regain my range of motion and may need physical therapy on this arm….

I did it…. well almost….. but close enough! Hopefully radiation won’t be too hard on me! Thank you ALL SO very much for your love and support, encouragement, meals, donations… visits, text messages….. it’s actually gone by so fast…. in retrospect. I’m so grateful for my Mom who’s helped me so much through my recovery…. my husband for picking up wherever (you actually HAVE to open doors for me now he he and carry bags <3) he had to….. and loving me and supporting me despite my changed appearance…. my children….. have been amazing through all of this…. My extended family…. the love and support has been amazing and I am so grateful!!!!!! My close group of friends who I will not name, you know who you are <3….. my best friend Tracey who came to see me twice during this ordeal and is currently going through hoops to be here for me more….. my best NC friends Tess & Lou… just the visits and feeling of normalcy…. I am so grateful for you both…. I’m even grateful for the hard times I went through during my cancer and the people involved in the beginning….. because that’s just how I roll… ❤ Thanks to the people who made me feel beautiful during this process…. it’s easy to not feel so beautiful!!! ❤

Tears….. Tears of joy are running down my face!!!!!!! I did it… and walked off…. LIKE A BOSSS!!!!!! I am so proud of myself….

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Recovery…

I was instructed to be at the hospital at 5am on the 17th of April… My doctor is pregnant and due, so I was thrilled when I knew she would be the one doing my surgery… They took me back to the prep room… my family took turns coming back and we said a prayer…. The anesthesiologist came in and said I’m going to give you something to make you sleepy…. I guess I lasted all of 10 seconds, no backwards countdown, I was just out….

The next thing I remember Darrell was there and the first thing I asked him was… “Did they take all my lymph nodes?” He said yes…. Each of my doctors made rounds and came in and talked to me but I was so out of it, I barely remember any of it… The took me to my room and my family was there… I barely remember it. My Mom said I was catatonic and my boys got really upset seeing me that way…. They left me to rest… I was so out of it, I had a morphine pump and I was barely pressing it because I was just so out of it from anesthesia… Surgery ended up taking much longer than we thought…

The breast removal went well and she had my left lymph nodes sent to the initial pathology… She told me she would have them cut them in half and see if there was cancer… Upon that initial cut, there wasn’t… So she asked him to slice them up a couple of times… and sure enough, there was cancer…. so as she told me if there was, she would take them all. My breasts and the lymph nodes taken from the right side were sent to final pathology….

I was then prepped for the 2nd part of the surgery with Dr. Clavin… he was placing the expanders… He told my family that it went much better than expected, I have really tight chest muscles… and he was able to expand them to 180 cc’s… with the intention of trying to get me to 400-450 cc’s…

At this point, we’re waiting for final pathology…. I may need radiation if there is a good amount of cancer in the breast…

I was at the hospital one day but they told me it was good if I could go home because my risk of infection would be less outside of the hospital…. So, I was home Friday evening.

My recovery has been pretty good… My Mom has been helping me with my drains… I think they will probably come out this week… I’m really, really sore but it’s tolerable as long as I keep on top of my pain meds… I’m taking Tramadol for pain because I don’t tolerate codeine products well…

So, one of my biggest worries come true… all my lymph nodes removed. She told my husband I shouldn’t lift as much as a frying pan with my left hand 😦  I need to be really, really careful to make sure I don’t get lymphedema… But to the best of my knowledge I am cancer free! And that’s what matters most….

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Bilateral Mastectomy – Tomorrow…

I was fitted for compression garments to use after my surgery to help prevent Lymphedema in the event they need to take all my lymph nodes and I start to swell…

Tomorrow at 5am I’ll be at CMC Main for my double mastectomy and lymph node dissection… I should be in the hospital for 1-2 nights depending on my recovery…

I’m really getting nervous and I have been tearful most of the day….. I worry about the surgery itself… and I’m kind of sad to lose my boobs….

Please say some prayers for me…. Thank you so much in advance…. It’s in God’s hands…. no matter the outcome, it’s in his hands…. and I’ll take whatever the outcome!

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It may be  bit before I can update… my husband will be updating as well as my friend Amelia via my Facebook page… https://www.facebook.com/dawn.paullingaddy