Today I met with my oncologist… He wanted to me to start Tamoxifen shortly after surgery and thus my visit today… It’s hard to believe it’s been almost a month since surgery… He told me from the very beginning that Tamoxifen would be my biggest ally with the type of cancer I have… The invasive lobular carcinoma is a tricky beast….

So when Dr. Brouse came in to visit with me today, he asked me…. how are you? “Frustrated I bet” he said… I said, yes… I was very shocked there was so much cancer that remained… He said “it was really surprising considering that the breast really reacted well to chemo”…. What he meant by that was… my breast had developed a large dimple… or crease from the nipple back to the armpit and the nipple was pulling inward towards the armpit…. that had bounced back somewhat or so it seemed…

After chemo… I could still feel the hardened tissue…. but they told me it may be scar tissue. Hope for the best, right? I did!!! When they saw my NORMAL MRI…. everyone was excited, including me… but elusive that was, for sure. 8cm of Lobular cancer, plus 7 of 12 nodes were cancerous….

I told him, I don’t trust these tests… he said he can understand why! There’s good reason, they’ve failed me more than once now! I asked him how long he thinks the lobular cancer has been there… he said, I bet 3 years…. I had a mammogram in 2012 and early 2013…. both did not detect the cancer. The LARGE amount of cancer….

With the amount of cancer and the nodes affected…. he said my recurrence rate without Tamoxifen is about 50%… with Tamoxifen it’s about 30%… I asked him point blank… Ladies my age, with similar status on Tamoxifen… have you seen recurrence? He said “we’re being brutally honest and that answer is yes and I don’t mean to scare you, but it does” and then he said “Unfortunately with Lobular cancer, it comes back, it’s the nature of the cancer”… On the plus side, he said “it’s a slow growing cancer so it’s not life altering right away if it does reoccur..  ” But.. by the time it shows it’s face… it’s usually progressed right along…

That being said… I’ve had this continual problem with my lung, since right after diagnosis…. I had a CT scan then, I had one during chemo for the same area that was bothering me…. and now… it’s back with a vengeance. I haven’t mentioned it, because you know… we cancer patients, we think everything is cancer…. There have been times when I do not feel it, but when I do feel it… it’s always in the very same area…. He said “Do I think it’s in your lung? No… Could it go to your lung? Yes” So, he’s ordered me another CT scan which I’ll have next week. He said… it could be something in the rib wall or the chest wall…. that is bothering me when I breathe deeply…. but we will pray that it’s not. My problem is… now I do not trust the tests. If it was a problem that came and went, if it moved locations…. but it doesn’t. Do I feel consoled that he said he doesn’t think it is in my lung? Not really…. I don’t trust these tests and the lobular cancer is a sneaky, sneaky cancer… it does not like to show it’s face. Although the doctors tell me it would in different locations…. I’ve done my own research.

So, what to do? I’m just going to be proactive with my own health… I’m going to get even stricter with myself… and eat a stricter diet of juicing cancer fighting vegetables… I’m going to eat a diet of raw foods and cancer fighting fruits and eat very little meats… and if I do, it will be wild caught fish or seafood or occasionally lamb…

Today at the doctor, although I told him… I’m ecstatic to be at this weight, it concerns me that I’ve lost almost another 10lbs since my surgery… very, very unusual for me… Could it be my diet? I hope so!!!!! I really do…

So, I’ll start Tamoxifen… he claims the benefits outweigh greatly the risks of it causing uterine cancer and blood clots…. and I’ll pray HARD that I have no side effects… I asked him, if I’m going to blow up like a blowfish from the Tamoxifen and he claims that the placebo patients gained as much as the Tamoxifen patients… I could afford to gain a few pounds, though… I HATE the idea of taking it… I really do… But, I’m honestly scared to death not to…. I trust that my body will heal itself, but I don’t know if I trust it 100%… without help.

I’ve been unable to stay awake lately after 8:30-9… and sleeping til 7am+…. My husband thinks I may be anemic because I’ve given up red meat….. which is entirely possible. So I will be headed to vitamin shoppe today to find something to supplement my iron. I eat tons of spinach and that is full of iron…. but apparently the iron you get from red meat is entirely different.

I found this amazing link yesterday for those who are considering clean eating and don’t have menu ideas and need it spelled out…. http://bzfd.it/1jAOGol

I found this sheet to use for myself as well…. I can’t eat soy because my cancer is hormone fed and soy creates estrogen…. but the others, are great sources…. I’ve been eating walnuts and almonds a lot lately, actually…. but these aren’t on these lists…. So this morning I think I’ll have some quinoa for breakfast…. 🙂

I just had to tell you my exciting news…. I had a shoot about a month or so ago with LunahZon Photography (www.lunahzon.com) – Makeup by Erin Ashley Makeup…It was an empowerment shoot…. Anyway, I was asked to be a guest blogger on Cure Diva (www.curediva.com) it’s an amazing website full of information and just about any product you can imagine you’d need if you’re diagnosed with breast cancer… Anyway, they are using my photo on their homepage… It’s one of 4 different photos that slides through…. So incredibly humbling and neat!!!!

Why do I let myself worry?

Every single cancer patient can relate…. It’s hard not to worry. It’s hard not to let your mind go there…. and worry about every little pain, worry about being here for your family or your kids…. It’s next to impossible to not worry to some degree…. I’m the biggest worrier I think God ever created. I have worried about things that will never happen….

This worry is very real, however… and unfortunately it is the reality of anyone who’s had cancer.

But, there comes a time… when you have to give it to God. Throw your burdens on him….

I had a visit with a friend yesterday who’s being treated for Stage 4 breast cancer. They’ve given her a time stamp and she is not focusing on those numbers. She amazes me… she’s out there worshiping and doing everything in her power to “walk with God”… We change our diets, we change our lifestyle, we undergo all these treatments….. and we rely on him….. I can’t imagine being in her shoes…. but she is truly the most positive, amazing person I’ve met…. and she IS going to beat this thing and she IS going to be that amazing one at the end of that tail….

I have stage 3 breast cancer and we discussed this yesterday… With Lobular cancer  it’s very sneaky and not detectable at times… So I have to trust that everything that I am doing…. to prevent a recurrence… is putting me in remission. And 5 years from now… I’ll have beaten those odds as well….

I have to trust that the doctors will do everything in their power to protect my heart and my lungs from radiation….

And… put everything in his hands…

My surgeon highly recommends relaxation and meditation…. lymphatic massages and relaxation. I’ve been trying each day to spend at least 10 minutes on Calm.com… it really does help a lot. And… prayer. It helps so incredibly much.

When we worry it robs us of today’s peace…. Give it to God… we can only control what we can physically control… diet, exercise, sleep, relaxation, limiting stress…..

I need to heed my own advice…. ❤

I think my whole entire life I would have done some crazy things to be at the weight I am now and suffice to say, I never even came close… Maybe if I was 20 at this weight, it would be ok…. But being almost 42 and at this weight…. isn’t so great! I’m not complaining… in clothes it’s ok… Thank goodness for Yoga Pants!

Let’s say… I’ve always had an ample behind…. My body is strange… From my waist up, I have NO fat. NONE. Like you can’t pinch any fat…. And then there is the bottom half… I’m you’re typical hourglass figure… Or I was. I have lost my butt…. I didn’t think that was possible…

Today in the dressing room, I was mortified….. I caught a glimpse of myself…. and this is what I saw…..

I’m not talking the little one…. the big one…. I’m like a Grandma back there who needs to grow into her skin…..

There is a reason when you’re older that you should have some weight on you…..

Dr. Clavin is talking about taking skin from back there….. oh my gee…. I don’t know if I want that on my boobs… :O

He is awfully talented however, maybe he can fix it all….. it’s a hot mess!

Anyone who’s kept up with my “journey” knows that as soon as I found out that I had cancer, I immediately made some changes….

I was a photographer (I am a photographer)… but I was extremely busy… and one of the ways I enjoyed life was…  cocktails…. I enjoyed my indulgences… let’s just say! I immediately cut that out…. and this weekend I found some VERY interesting information regarding the statistics about how alcohol influences your risk of breast cancer…. Here is a VERY interesting link regarding those findings….. http://www.todaysdietitian.com/newarchives/080112p48.shtml

Next, I cut out all table sugars but kept stevia, agave nectar, honey and 100% natural maple syrup in my diet at that time…. I ate gluten free… and I eliminated beef and pork… I drank alkaline water, etc…

I was so confident in my diet that it was helping my progress with chemo…. until I received my pathology report after my mastectomy…. I was not very happy with how much cancer was left.

So, I’ve implemented some more changes…. I’ve now eliminated almost all natural sugars as well… other than on very rare occasions… I will have stevia… and fortunately Lily’s makes chocolate that is sweetened with stevia and for anyone who knows me….. I need my chocolate and now I can still have it. So this is my little treat… and I’ll have a few bars each day! Additionally…. I’ve been juicing. I went garage saling with my Mom on Saturday morning. I needed 2 things… clothes for Greyson and a Juicer… and I scored both! A juicer never used for $10 and an entire wardrobe of guess, Ralph Lauren and Nike clothing for $50 and when I say an entire wardrobe… I mean…. his drawers are fulll!!!! It was a productive day…. Anyway, I’ve been juicing at least for breakfast each day….. I was not one to eat breakfast… but I’ve been losing quite a bit of weight lately… so I thought maybe those extra calories would help…. As of right now, from when I was diagnosed… I’ve lost about 27lbs… It did help some… I didn’t lose today and I was up .1 of a lb…. Also, I wouldn’t say I’m a vegetarian…. because I do love meat and I do miss steaks and burgers…. but I eat very small amounts of meat…. I mean… a few bites…. Usually if we go out to eat, I’ll eat a salad and maybe a side of veggies and a sweet potato… or some french fries (on occasion)…. I will not TOUCH McDonalds, not even if I’m starving….. I won’t even eat their salads…. In a pinch, I’ll go to Taco Bell and eat their Pinto’s and Cheese…

I wanted to implement Yoga… and messaged my Surgeon and she quickly told me… No Yoga… It uses the arms… and my arm is already developing lymphedema… It’s  a mild case at this point, but I do wear a compression sleeve… and unless you measure my arms from before til now… you wouldn’t know because my arms are pretty thin…. but, on the underneath… where you’d normally get the flab… my left arm has flab and swelling to the elbow and my right arm does not. So, my exercise will be walking…. I’m considering walking in the mornings with Greyson…. because it seems nights never allow enough time to walk….

Also, she said I should meditate… A friend recommended a site… Calm.com and it allows you to take 2, 5, 10, 15 or 20 minutes to just relax…. it’s very therapeutic…. I recommend it!

Yesterday I had my first “fill” to my expanders… while awake. I took a pain pill before I left just in case… but it really wasn’t  as painful as I expected. When he inserted the needle I felt a couple second zinger and then when he pulled it out… you could feel it. I haven’t been brave enough to post my personal photos on my blog… but I’m extremely pleased with how my “foobs”  are looking. I told my plastic surgeon that I wanted to be bigger than I was… He said maybe 1 or 2 more fills depending on my preference… I think they look great, even now…. I want to be proportionate to my body… so we’ll see how the next fill goes!

I wanted to show a few photos I found to explain what expanders are….This is similar to the photo he showed me in his office…. it shows the different between the expander and the implant…

Today, I’m not really sore at all…. I feel a tiny bit stretched, but that is to be expected… I’m really happy with my recovery so far…. But, I have a long way to go with the reconstruction process…

Dr. Clavin more than humored me to get this photo… I told him he would be on my blog and I promised to send it to him so that he could see…  Dr. Clavin I appreciate very much what you have done for me… fighting for me to get me these objects that sort of resemble boobs…. but they honestly have made me feel so much better about myself. I honestly cannot imagine how I’d have felt coming out of surgery to a flat or concave chest… I tried to prepare myself, but I don’t honestly think there is a way to prepare yourself. I was pleasantly surprised at what I saw when they looked at my chest…. and I have told you that I’ve researched A LOT…. and I’m so happy with the job you have done so far on me…. Thank you! And, thank you for this photo… 🙂

So I thought since the past several blogs have been pretty heavy… I’d lighten this one up…

Little Ditties… 

I haven’t washed my hair in 5 months…  😉

I have not had to wear deodorant since I’ve changed my diet…. this one amazes me…

I still smell good…. 😉

I’ve not had to shave anything since chemo began…

My hair is growing back and I look like a gosling… it appears to be coming in blonde…

Since I’ve been diagnosed with cancer I have lost 25lbs

I now need a new wardrobe.. 🙂

I’ve decided not to get nipples made out of skin…. I am going to get 3D Tattoo’s so I don’t have to wear a bra!

When a woman with breast cancer says, I need to get a fill…. it doesn’t mean her nails… (.) (,)

I now need progressive lenses… because I’m blind as a bat, close and far away… thanks to chemo….

Chemo brain does not go away….

I lost all the hair on my head, my nether region and my legs…. but not the hair on my arms?

Boobs without nipples look pretty normal, actually…

When I was in the hospital I called Darrell at 10:30 and asked him when he was coming up to see me? He informed me it was night.. not morning….

Being bald has it’s benefits…. I don’t mind the windows down anymore….

I can’t lift my arms over my head… but I’m working on it…

When you stop eating sugar, you don’t crave sugar or carbs….

I now have a reason to make my husband open all doors and carry all bags… ❤ Including my purse… 😉

My staples… Coffee with organic half and half… Lily’s Chocolate Sweetened with Stevia… Starbucks Latte (no sweetener)…Udi’s Granola…Sushi… Alkaline Water… Watermelon…

When you have a bald head… you have people approach you all the time, with cancer… survivors of cancer… and these little conversations are the most rewarding conversations of all!

I’m sure I’ll think of more…. and I’ll add to this list… but that’s all for now 🙂

We have been a house full of sickos… What I’ve come to know is Greyson had small ball that was full of holes… and he was playing with it in the hospital…. when I was in my room, I opened my eyes for a second…. saw him licking it…. but I wasn’t sure if it was real or not…. til I asked after… It was real. He licked that ball…. and brought home a bunch of garbage from the hospital….

It starts with fever and sore throat which the fever responded well to a penicillin shot… then he was not improving and we ended up in the Urgent Care where he was diagnosed with Adenovirus due to his extremely red pussy eyes…. but he still didn’t get better….. and then he was treated for Whooping Cough and is finally feeling better – it’s been almost 2 weeks…. it’s 2 weeks today since my surgery. The rest of us had a wicked sore throat that didn’t go away…. which I seemed to have passed around….. and still awaiting culture which should be in today…. but when I’m intubated I get a staph infection in my throat…. so we were treated for staph…. and now are getting better! Absolutely craziness….. Now my older boys are coming down with the whole cycle….

I’ve been thinking about radiation, a lot…. Looking at alternatives. Damaging my heart…. really concerns me! I have no doubt my doctor is going to take the utmost care in protecting it… but he said there’s not a lot they can do! Throughout this, however…. I’ve had excellent care.. my team of doctors, I honestly feel is a dream team….. just great! But… I’m scared to be brazen enough to say… No Radiation For Me…. I want to trust natural…. I feel like it can help maintain, but I feel like I have to do the radiation to make sure…. It can also affect my lungs, he said… I could end up with pneumonia or as some people have said “dead spots” in their lungs…. I asked a question in my BC support group and asked how many had rads on their left breast… and who has been affected… most have said that their heart has been ok…. BUT, the effects seem to be years later…. It’s concerning. I just talked to a friend and she pointed out that the heart is actually in the middle of the chest…. so when they radiate left or right, they can miss it…. He wants to radiate my mammary lymph nodes which run down the center of the chest…. so I think that’s the concern.

I just received an email from my radiation oncologist…

Dawn –

Hope you’re well.

Sorry to do this to you, but I want to revisit some of the scheduling concepts we discussed yesterday. Dr. Clavin anticipates having your expansion finished sooner than I’d anticipated. He expects to be done on the 16^th (two weeks from tomorrow), which means I could have your treatment started by the end of May. If we stick with our original plans to target starting radiation on June 9^th, that means we’re talking about a 2-week delay. I ran it by Dr. H., and she expressed concern about that delay. She knows you best, so I’m inclined to factor her concern into our planning.

So, how would you feel about pushing your beach vacation back? If we get started on radiation ASAP, you’ll be done in early July. If we build in a few weeks of recovery, that could still leave you plenty of time for an August beach vacation.

Thoughts? Feel free to call me to discuss, if you prefer (704-xxx-xxxx).

Thanks –

Ben

BOOOOO!!!!!!  They don’t want me to wait…. that’s not cool 😦

Just can’t wait for the beach…

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???