October 2014 Surgery Sisters

Fourminor

Cancer clarifies that I have been working my butt off all my life and dammit, I want to retire and live long. I want to finish fixing my house, see my boy grow up to be a man, and sell it for a nice profit and live out the last of my days on the Big Island of Hawaii. And I want my husband with me for all of that.

I am quite aware of how fast it flies.

Akita, if I were you, I would pass on those wigs. Energy is not good for you. You will think of her story every time you wear it and it will make you sad.

I'm starting CMF on Friday although I remain very ambivalent about it. I will see how it goes, but I am not pummeling myself. I really want to hear what comes out of San Antonio next week.

Fourminor

BTW Sharpei, I finished my fills and I did fine. Really looking forward to the exchange, whenever it happens.

LauraW68

Thanks Sharpei!

I have one or two more fills left. I am amazed at how much just 50cc made the TE's feel better at the first fill.

Cancer put things in perspective for me more than clarifying things. To slow down, enjoy life and my family.

revup-65

Akitagirl I want to share with you my thoughts, I felt the same way you do, all of it.  Here is the bottom line for me, you live your life in a way that fits you. You can't stop worrying for awhile, living in the moment with chemo that was a challenge. Here I am, 20 years later, I will tell you the experience gets softer, not so sharp and painful or fearful. I did not expect this so, I am reliving all of this over with the knowledge that the journey gets easier but not at the beginning. If I had 20 yrs why won't you and all the sisters here. They didn't know half what they know now back then. I was angry about having to wrap myself around treatments and side effects but I did. I had friends pass on while I was in the cancer group for 4 yrs that was difficult but again here I am. Why wouldn't you live as long as I have with no problems, not a bad run. I aggressively treated my cancer too. So what I want to say back then I thought I had a short time now I realized I had a long time. Hang in there, I will be sending you positive thoughts and blessings my sister.

 

 

 

Akitagirl

Wow! Thank you, everyone. I admit to crying as I read through all these honest and encouraging responses. Thank you.

Fourminor: That is EXCELLENT recommendation, as I did pull out two of the wigs and was considering using them, but you are correct, I cannot stop thinking about the woman who just wore them this past February and now is no longer here. I will pass on all of them.

Hopeful: You are such a blessing and encouragement to all of us here! You reminded me that I am strong, healthy, fit as a fiddle and will fight hard! My goal is to skate in the 2016 Adult National Figure Skating competition. I didn't skate last year due to the stupid stroke (like, really?) and I obviously won't skate the 2015 as I am going through this journey. However, a lot of my adult skating friends are encouraging me, sharing with me their cancer stories and have even encouraged me to skate whenever I feel like skating - even during chemo. So, today I am lacing up my boots and going to skate for the first time in 3 months!

Revup - what an encouragement to see a survivor of 20 years, going through this again with the sight on another 20. Thank you!

Yet, also everyone has reminded each other that it is okay to ponder our mortality. It does really put what it most important in our lives into crystal clarity. That is a good thing. You have all also mentioned 'living in the moment' from day to day...and it brings to memory of a blog (can't remember from where)...where a lady talks about walking in a dark camp at night in the mountains. She needed to find the path to the bathroom and only had her cell phone flashlight. So, she had to focus on just the very next step and not on anything else. Yet, when she stopped to take a breath, she turned her flashlight off, looked up and saw the millions of stars in the galaxy, she realized the quietness all around her the the little rustling from leaves and critters, and Just Stood Still.

What a thought, huh?

I hope everyone has a wonderful week.

Laura - I am praying your first chemo goes well today! You are in my thoughts. Let us know how it goes!

Love to all my sisters,

Akitagirl

Akitagirl

BTW...Hopeful - you cracked me up with the thought of watching A Christmas Story in French!!!! I am going to do that this week while I am getting my first chemo. The idea of him standing out in the street, gloating over the leg-lamp...in French, makes me laugh so hard!!!!! Really hit my funny-bone. Oh my goodness...

Fourminor

I am glad you agree because I really felt strongly about that as you would be putting her "hair" as it were on your head, which is very intimate, and therefore seeing something of her sad story on you in the mirror.

You must write your own future.

LauraW68

I'm done!

One chemo down!! 3 more AC to go then 12 taxol after that.

I was nervous but the nurses were excellent in reassuring me. Talked to me each time a new bag was hung up on the IV pole, etc.

We got in the infusion room just as lunch was being served. We were given sandwiches, chips, a dessert, and a bottle of water.

Their snack room also had more sandwiches, water coffee, chips or pretzels plus other snacks.

I ended up getting a headache but they were quick to give me Tylenol which didn't help so she asked if it could be sinuses so she had me to take one of the Claritin and that did the trick.

All in all, it wasn't as bad I imagined it to be.

I have to go back tomorrow for the Neulasta shot.

Now to watch for the side effects.

OceanSky

Hi All...

Long time since I've chimed in. Hoping everyone is doing well.

My BMX went well and my immediate implants look really good.

I've spent the last month at our condo at the ocean and that's been a blessing. I have another two weeks here.

All's well with the exception that they've been suspecting I have a meningioma. A meningioma is a brain tumor although not usually malignant. I have a weird neurological illness that's gotten worse and they had suspected the meningioma right before I got BC.

First things first obviously but I was absolutely shocked when the oncologist told me there's a strong correlation between BC and meningiomas. They don't know why they're related, but they are in a very well known way.

Am not going to have the MRI until I get back from the beach. Before the BC I thought 'No way, it couldn't be...' But now it seems more likely.

The problem with a meningioma is if it's causing symptoms (and I have the symptoms), thus the reason it was suspected. But the problems is they would have to 'go through' good brain tissue during surgery to get it out. Hard to imagine.

Am feeling feeling really blessed right now that my BC surgeries went so well and that my immediate implants look good. Even the PS's PA said 'they look better than 90% of his patients'. My husband said 'spectacular'...So that's a happy thing to hear.

Am using coconut oil and shea butter un the scar tissue in the fold and still wearing a lightweight bra during the day. Are others still wearing bras?

My sister had a BMX almost 2 years ago and she's gotten feeling back in her nipples and the skin covering her implants...Almost unheard of. Am hoping I get some back but honestly am very grateful for what's happened and that would be far more than I expect.

Bright Blessings All..

Akitagirl

Dear OceanSky,

It is SO wonderful to hear from you and to hear the wonderful results of your surgery with outstanding results with your implants! Congratulations!!!

As for the meningioma - yes, there is a very strong correlation. There is a specific gene mutation that is well known to have correlation with meningioma, BC, colon cancer, skin cancer, kidney cancer and endometrial cancer. This is the PTEN mutation. The reason I know all of this is because I have this mutated gene. Now, I am re-sharing this with you because in 1995, I began having very vague neurological symptoms and felt "impending doom". I felt dizzy, etc, etc. Went to my primary care doc, he did a few physical tests on me and said I needed a CT scan. As I was in nursing school at the time, I said "no way"! It must just be allergies. But he convinced me to go and get one by stating that it would help me understand what patients have to go through.... So, halfway through the CT scan, the radiologist came into the scanning room and asked if I had headaches, ringing in the ears, etc. He turned to the nurse, said, "get her into the MRI now". I thought, "uh oh". I hadn't even told my husband I was getting this done because I was so embarrassed.

I walked into the reading room and saw a huge 3 cm mass right in the center of my brain - adjacent to the Circle of Willis (the main blood supply to your brain, right in the center). Fast forward to the next few days. They flew me up to Wright-Patterson AFB on a blackhawk helicopter (very cool!) and I had major craniotomy with a left temporal lobectomy. In other words, I am missing my entire left temporal lobe. The final diagnosis was an epidermoid tumor. That was benign, but the surgeon had to leave a small bit that was attached to my PCA (artery) and told me I would probably have to have another surgery in 10 years.

Sure enough, in 2005 - I had a repeat craniotomy to completely remove the regrowth. Even now, I still have some residual benign tumor. Yet thankfully I have a lot of space in my head ;-) So, now with breast cancer, and melanoma - my PTEN mutation finally put everything into place. It doesn't fix anything, but it does explain the very strange medical occurrences I have experienced in my 42 years of healthy, athletic life.

All of this to say, that if you do have a meningioma, and it is towards the center of your brain - don't panic. There are so many ways to attack these benign masses. The point is to take the mass away so that you are not causing ischemia to your good brain cells. There is now gamma knife, focused laser, etc. etc. It has changed tons over the past 20 years. Hopefully, knowing my story will give you some encouragement. Brain surgery is certainly scary. However, to be honest with you - it is the easiest surgery to recover from physically. You have no pain receptors inside your skull, your scalp incisions heal rapidly because the scalp is incredibly well-supplied with blood vessels.

Please let us know when you get your MRI. When do you return from the beach?

Bottom line - I am thinking and praying for you to NOT have a meningioma, but if you do, that you will have the right team to take care of this so that you can move on with healing and enjoying your wonderful life!

All my best,

Akitagirl

Fourminor

OMG Oceansky and Akitagirl!

I must admit I had not heard of the meningioma-breast cancer connection. I'm sorry about how I had to learn it.

I have a minor question for everyone. Can anyone sleep on the side with the TE? I cannot get comfortable on my left side at all. Its like laying on a tennis ball. This is another of the reasons I am grateful I didn't have my right breast removed--at least I can sleep on that side. I am a total side sleeper, but its hard to stick to just one side (had bad hip pain when I was pregnant and spent months on my left, but it was really not good.)

I was looking through our camera yesterday and i was nostalgic for my left breast. It was nice to see it again.

Sharpei

I sleep on both sides now, almost two months after surgery. But I always caress my Barbie boob with a soft, squishy pillow. It seems to like the support. Actually I occasionally sleep on my stomach, my preferred position, with the pillow nearby. Back sleeping was the worst! My mouth would fall open and I woke up dry as the desert. Ick!

Had my first fill today. I felt NOT a DAMN Thing. Goes to show how dead this alien is. I didn't feel anything when my nurse plunged the needle in.

When I poke Sharpei with a finger tip, she squooshes. Glub Glub, fluid moves from one side to the other. Except it is hard on the top.

This is weird. But not, today, painful. Thank you.

So many separate journeys here. The stories we share. What we learn. Oh my. Thank you.

Sharpei

OceanSky

Hi there Akitagirl and Sharpei!

Feel like I'm catching up with old war buddies. Glad everyone made it to this point and is looking onward...

Akita, am sorry you had that happen. Glad it's behind you and hoping you're doing well now? Was your case a version of Cowden Disease?

Meningiomas though and breast cancer I think are a bit different than what you referenced. I researched what your wrote and the genetic issue and the relationship between BC and meningioma is a bit different.

If you Google breast cancer and meningioma you'll find pages of data between the two. None of them include the PTEN mutation. There is though as you said a lot of data about PTEN mutation and brain cancers and relationships to a number of other cancers.

My oncologist explained that there is not yet a known 'reason or cause' for the relationship between meningiomas and breast cancer yet the number of cases of women with both is disturbing.

For those of you who had BRAC testing with normal response (as I did) don't get too comfortable. There are now 16 known genetic mutations that are associated with breast cancer! I'm 'in line' to have all those genetic tests done.

Any surgery involving the brain and any disease involving neurology is very difficult. Of course most are thinking..."Hey, that couldn't happen to me." That's what I thought about BC.

Akita, I have a very weird. rare neurologic illness known as Dysautonomia. In some people it's debilitating. In some it's just wicked mean! Mine is wicked and mean. It's so weird most doctors including neurologists and cardiologists are clueless about it. I go to Mayo in MN and they have one expert. Am lucky that my cardiologist understands it and it was he who said 'I think you have a brain tumor'. It was harder to hear that than hearing I had breast cancer.

Akita, I'm so glad you're doing well after your brain surgery. What's that joke? 'I'd rather have a bottle in front of me than a frontal lobotomy?' Something like that. But I am glad it was NOT your frontal lobe! That would be a horrible thing. I have 'weird' neuro issues but if a person and their docs sees them start to progress or if data shows definitive data (I have both) then the MRI gets ordered..Do you have any lasting neuro issues?

I'm happy to wait another couple of weeks before the brain MRI and enjoy the beach and heal. If I need more surgery it will happen but as I've told people...'Don't mess with my beach time!' It actually got hot here today.

Best to all. Keep healing!

Akitagirl

Hi Fourminor: About to "hit the hay" - but wanted to ask if you feel a large lump under your armpit? I can't remember if you had a ALND...but if so, you might have a seroma that needs to be drained. I had the exact same feeling you just described, put an ultrasound wand over the area and saw a large sac of fluid. I went in today, had Dr. Green pull out about 30 cc's of fluid and feel much better! I am hopeful to sleep on my left side tonight, as that is my normal sleeping side. Trust me, I feel your pain.

OceanSky - the only longterm residual of my two brain surgeries is a loss of word formation (expressive aphasia) when I am tired or stressed. Fortunately, when I am presenting, somehow this doesn't sneak in. However, during business meetings, I often cannot say the word that I am thinking and just have to 'talk around it'. For example, right after my first surgery, I wanted my husband to take me out to Texas Roadhouse for dinner. I could think of the name, but could not get my tongue to speak it. Instead, I would say, "I want to go to that restaurant that has great dinner rolls, yummy peanuts for appetizers and a great margarita!" He would be able to figure it out. ;-) Otherwise, I believe that I function at a very high level and have very few permanent deficits.

Regardless of the source of cause...there is so much research going on right now to really understand genetics and their effects on disease processes, that it is amazingly overwhelming. Just imagine what we will know in 10 more years - as long as we continue to receive funding and interest from my profession of pharmaceutical industry. If you are interested, I could send you some journal articles that discuss specifically the relationship between the PTEN mutation and several benign and malignant growths (often hemartomas). Yes, it is also known as Cowden's Syndrome and like all other mutations/disease processes, has a large span of presentation - in other words, not everyone with PTEN fits the exact same model. However, the correlation is certainly there - although I do read through the analysis and understand that most of the research is retrospective - the weakest of all research. Yet, how to we prospectively research this mutation unless we test all infants at birth and follow throughout lifetime?...unfortunately we do not have the funding to support that.

Sharpei - that is great recommendation for an extra cushion. Our alien boobs are certainly something to begin a longterm relationship with, but I am feeling positive for all of us that we will all be able to look in the mirror and see the beauty given to us from the inside out.

Nighty night,

Akitagirl

Akitagirl

P.S. OceanSky: I know of dysautonomia, but not much about it. You have given me a new topic to research and I am very happy to hear that it is not debilitating to you. I also am very thankful to hear that you do have an expert on your team that has full understanding of this disease process and that you are going to get this addressed. I feel your positive energy and love for life and know that you will come through with strength and courage. You are one tough and strong lady, and I am very honored to walk through this journey with you and our other BC sisters.

Enjoy what is left of your beach time...it was 12 degrees celsius today - brrrrr I am jealous!

horsemom

ocean sky

That's strange that you mentioned dysautonomia. Four years ago, out of nowhere I presented with POTS, a type of dysautonomia. I was hospitalized 3 times. Effected all autonomics including heart rate, BP, temp, breathing...

Docs didn't know why I got it suddenly and said maybe a virus?

Makes me wonder...

OceanSky

Horsemom, POTS is indeed one form of dysautonomia. It's a complicated illness...All forms of it. You were very fortunate to have yours go away. Some people experience a mild version and hopefully that was the case with you.

Yes, it affects all aspects of the autonomic neurologic system and is incredibly complex.

The viral component ....Some people carry a higher 'viral load' to various viruses that can be measured and there is evidence in some cases that this may be one factor among many. There is no one cause.

Glad you got better!

mefromcc

Saw my PS today to work on scheduling my DIEP in February. They are submitting the paperwork for the CT scan. I'm currently sitting at my BS office waiting to be called in to have fluid removed from my left booblet.

mefromcc

Wow. No one has logged on the past four hours. I had 40ml drained from the left booblet. We discussed (again) whether to put a drain back in. He was hoping not to because they leave an opening for infection. He said if I didn't mind having a needle stuck in me as needed, we could skip the drain. So we left it that I would call if I get an accumulation more than 20ml. Sigh.

Slavrich

mefrom: When I was producing too much fluid, my BS said I was overdoing and needed to sit down and pretend my arm was broken-I did a few days of less activity and movement and allowed my body to heal. The fluid level dropped within 2 days. Hope you are not overdoing!

Relax and heal!

mefromcc

Stavich,

I have been overdoing it, since I have been back to normal activities, including packing boxes of household goods to get my DH of 2 months moved out of his old house into our house. My BS has put a breast binder on me, but I can't sleep with it on because it digs into my armpits and hurts.

Obviously I need to rethink the activity level and binder. Hmm, make like a broken arm, I like that image and can do it. Thanks.

funnthesun68

Fourminor - I have having similar issue with my TE but I have it on both sides. I am a side sleeper and I have tried to lay on my left side, but I can't hurts way too much, so I sleep on my back....cannot wait till I can sleep on my side again! Hang in there, maybe when we have the final implants we can go back to normal! I am having a hard time sleeping in general. I started Tamoxifen last week and now I am wide awake from1 am till 4 am. I am back to work now and its killing me that I cannot nap! LOL

Sharpei

I believe it is time to consider the LYMPHEDEMA PURSE.

We know to avoid pressure and pricks on an arm where lymph nodes have been disturbed. No pressure or pricks,

It is time to lighten up the purse, which some of us have turned into luggage, homes for us away from home. Don't these cause pressure? They have been known to cause back problems.

For ten years I have carried small, light bags, usually cloth. LLBean makes small totes in Madras which have suited me for summer. There are many other designs. For winter I have some small leather cross bodies and others which stand up. I do prefer a bag which "sits" on the counter without spilling its contents.

I have had to think hard about what I really need in my bag. A light folder with some cards and my license, a pen, a couple of cards for notes, some lip gloss. Sunglasses when needed. A change purse and some bills.

When I need more stuff on a journey or day out, I have larger bags which I will carry in my good arm.

A cute, small, light purse. The lymphedema bag. For our health.

Lymphedema can appear years after node removal. It is best to avoid it and protect that arm.

This is one of my techniques.

Sharpei

horsemom

I've been sleeping in a recliner for 5 weeks. Slept in my bed first time last night. Felt great at first. Used a big pillow under my knees and at my sides so I wouldn't side sleep.

Woke up several times on my side… Yikes! my TEs hurt terribly. When I finally woke up for the morning my back is killing me.

I am a side sleeper. I just can't get comfortable on my side in my bed. And I can't sleep on my back in my bed without getting a back ache. What am I supposed to do? How long does everyone stay in the recliner?

horsemom

I've been sleeping in a recliner for 5 weeks. Slept in my bed first time last night. Felt great at first. Used a big pillow under my knees and at my sides so I wouldn't side sleep.

Woke up several times on my side… Yikes! my TEs hurt terribly. When I finally woke up for the morning my back is killing me.

I am a side sleeper. I just can't get comfortable on my side in my bed. And I can't sleep on my back in my bed without getting a back ache. What am I supposed to do? How long does everyone stay in the recliner?

Fourminor

I went back to work almost a month ago and I made a promise to myself that I would carry a lighter bag and only carry it on my right. I am fond of Longchamp totes, they are extremely lightweight but durable.

I also find I am unwilling to put on any shoes or boots that are not comfortable. Its like the TE is all the discomfort I can ignore for the day. But lately I'm not noticing it as much as I used to.

I slept in my bed the whole time; initially I used a v shaped pillow at my low back ($30 on Amazon), two pillows behind my back and head and one pillow under my knees--this seems to be the key to being comfortable on my back. At around the third week I experimented with taking out the V pillow and one of the pillows behind me so I could lie flat (kept the one under my knees). And then, because I didn't have a right mastectomy, I started sleeping on my right side, but with a pillow in front of me to rest my left arm on and a pillow between my knees so I wouldn't tip forward. That seems to do it so far.

1st chemo today.

sandra4611

Four, I chuckled when I read your post because it's so true. After getting through all this, we are simply unable to accept discomfort when we can avoid it. Sleeping is one of those things that we struggle with. Does it go on forever? I don't know. I'll let you know. I've been at this since August 2013 and it is lots better but still takes some pillow maneuvers. Sorry to say it doesn't disappear with implants.

Yesterday I saw my PS for a 2 month checkup. He was delighted and proclaimed surgery #5 a success. My own tissue has grown into the grafted AlloDerm "scaffolding." The implants are staying put and as a bonus, look good too. He gave me an early Christmas present - the final surgery is scheduled for December 19th. My remaining mud flap will be removed and I'll have fat grafting to the divots on my left side from the many repair surgeries and more fat grafting to "low water crossings" across my chest from the BMX 15 months ago. I was sure none of this would happen for another month or two, so it was a surprise.

Yesterday was my birthday too, so it was a good day. A friend from another BC.org thread came to San Antonio on a short vacation and I met her for lunch. It's so cool to meet someone you already feel close to for the first time. Whenever we are traveling I always make it a point to meet a nearby sister.

Akitagirl

Hi there everyone,

Just checking in... Had my first chemo yesterday. With the exception of a couple of SEs from the Herceptin (chills and back pain), the first dosing went fine. I was exhausted last night, but have not been having any nausea or pain. I go in for my $12,000 Neulesta shot this afternoon and another boob fill right after that!

Start back to work on Monday and finally feel both emotionally, physically and (hopefully) mentally ready. Standing against any 'chemo brain' and believing in strong energy and feeling good.

BTW...I declined steroids for my chemo and am thankful that was a good decision. No major swelling and no terrible nausea, hence no need for nasty dexamethasone.

I hope all is well with everyone!

Have a great weekend,

Akitagirl

Hopeful82014

Belated birthday huzzas to you, Sandra! I hope this will be a great year for you.
Glad you got such good news, too.

Robyn, glad to hear you're doing o.k. I'm sure that was an intimidating experience to face and I'm happy it wasn't as awful as you probably anticipated. take it easy this weekend.

I'm looking forward to being home later today and meeting w/my surgeon on Monday to follow up on my results and map out the next steps. I expect one of them will be to renew my rx for Femara.

Take care, all and have a good weekend.

Sharpei

Sandra, happy birthday and happy healing! I am glad for you. What a bumpy road it is to get some lumps on our chests!

Sharpei