Questions people ask part 1

Jan2

So I was having a conversation today with a fellow MBC (Metastatic Breast Cancer) friend. We were talking about how people don’t know what to say because they have no idea what all this cancer stuff is about. People think that 1. All cancer is the same – you get it you die or you are a “survivor/warrior” and nothing short of a miracle has happened because you “beat” it.

Well let’s start with the first thing. Is all cancer the same?

For sure it’s absolutely NOT!

I know nothing about other cancers so I’m only going to stick with what I know. And right now that’s breast cancer. Note that I truly only know about my own. There are so many variants on breast cancer that it would be an entire dissertation to try to explain them all!‘I’m going to try to keep it super easy!

There are many different forms of breast cancer. Ducal vs. Lobular. ER/PR+, Triple Negative, HER2+/-, invasive, non-invasive, situ, bio markers, stages, grades, metastatic…and the list goes on. So everyone can have any combination of these things. So before you have the person or yourself written off as dead, you have to know the characteristics of the type of cancer. Different characteristics respond differently to certain drugs. For example Aromatase inhibitors work very successfully with ER/PR+ (estrogen receptor/Progesterone receptor) This is because ER/PR+ cancers feed off of hormones. Other cancers such as Triple negative are harder to treat most of the time because there are not as many drugs available.

Most of the time when people say they are Stage 0-2, they have an excellent chance of full recovery because this is considered early stage cancer. And in some circles they say Stage 0 is not cancer but a pre cancer. It’s when you get to State 3 that things get a little tricky. At that point the cancer has spread to lymph nodes from the breast. Now, surgery, chemo and radiation are typically prescribed. (Not always in that order! In my instance I had to do chemo first because we had to shrink the tumor and get it away from my chest wall before they could remove it) Sometimes after treatment there was a rouge cancer cell that somehow evades treatment. Kind of like koi in the winter…that pond is frozen and they somehow bury themselves to protect from the elements. When this happens and the cancer cells move to other parts of the body such as bones and organs, it is then considered metastatic. As Stages 0-3 are treatable and has the potential to be cured, Stage 4 is not. Once you have been diagnosed with stage 4 it is not longer curable. There are treatments that can slow the growth of the tumor. There are treatments that shrink the tumor. There are even treatments that may put the cancer in remission. So you really have to know the severity of the cancer based on a lot of different factors as mentioned above.

Does this mean that if someone is diagnosed with breast cancer they are going to do in like 3 months?

Unlikely. If you are in the early stages (0-2) you will probably live your life out and all is good. Now are there exceptions where early stage ends up NED (no evidence of disease they don’t say cured any more…that’s another blog post) and then a couple years later it comes back Stage 4. Sure does. But it all depends on the features and treatment plan.

I put stage 3 in this no mans land. I had stage 3. Some studies and doctors consider stage 3 early stage but others consider it late stage. Evidently stage 3 has a better chance of returning, especially if it is lobular. Lobular breast cancer is a sneaky bugger. They like to hide from screaming and it’s not the classic pea sized lump you hear about. I know people with Stage 3 who have been around for decades, and I know those who it came back pretty quick.

Now lets talk about Stage 4…the death wish. When people hear you have stage 4 breast cancer they feel sorry for you, they look at you like they have pity on you because they know you are going to die “soon.” I remember when I was first diagnosed there was a lady in our support group who was diagnosed with stage 4. Everyone was afraid of her. I mean this was a group of breast cancer people! But everyone treated her very differently than everyone else. I myself even felt that way. Like what do you say to someone who is going to die “soon?”

“Soon.” Let’s talk about the timeline. Again, this depends on the features the cancer has taken on. Sometimes when the cancer moves from the breast area to other parts of the body it morphs and changes. I may have been hormone driven, but now that it has traveled to other parts of the body, it has taken on different characteristics. This requires the doctors to re-evaluate the situation and come up with a better more appropriate plan.

What does this mean? Well the person with stage 4 could live for months, years, or decades. It all depends on how it is responding to treatment.

The one thing to keep in mind with people who have been diagnosed with Stage 4 breast cancer is they think the same thing you do! They have it going through their mind that they have weeks to live and panic. They are scared because there is a lot of unknown in the beginning. There is a lot of waiting around and worrying. The oncology team comes up with what they think will be the best course of action based on all the factors from the tests of the biopsy. They have a roadmap. If the first treatment isn’t responsive or stops working after a while, they go on to plan B. So rest easy that your team will take care of you the best they can for what is available for the type and characteristics of your cancer.

The best think you can do with someone who has been diagnosed is to treat them the same way you always have. But understand that they are scared, confused and every other emotion out there. So they may not want to make solid plans with you. They may not want to make any plans at all. This is because they have no idea how they are going to feel from one day to the next. It is a roller coaster of emotions and how you feel. If you think it is impossible to keep up with try being person who has been diagnosed! It’ll make your head spin! Please be patient and understanding. And know that the will probably be around for a few years.

The Biopsy

Dec28

I had the bone biopsy yesterday. Got there at 11:30. They prepped me which was a lot of me laying there. Got the IV in, then the dr told me what they were going to do and how they were going to do it. Yes I was scared to death and thank god they sedated me.

It took about a half our to get me all set up with the CT machine. They finally gave me versed and fentanyl. They didn’t have to drill or hammer into a bone. I’m not sure that’s a good thing or not. So they suck the guide needle into my hip bone and then the smaller needle in the guide needle to extract the sample. The actual procedure only took 26 minutes.

Went back and they kept me for about an hour before they let me leave. Yes Pete drove me home. And even stopped to get something to eat since it was 3:30pm and I hadn’t eaten anything since 7pm the day before. When I got home I basically slept the rest of the day.

I didn’t feel any pain but for the amount of drugs they gave me…

Now today I woke up feeling like I had a hang over and there was mild pain at the site. It eased up as the day went by. You know I had so many people tell me how barbaric it was and how painful it was going to be. They said I would be down for at least a week and it would take like 3 weeks for it to heal. So of course I was scared to death. Like I did NOT want to do that. So what this means is never listen to people regarding procedures and medications!

Anyhoo. Since we already know that the biopsy is positive, the main purpose of this was to see if it was ER/PR+ HER2- like my original breast cancer. This will determine how to treat it. So I’m kind of hoping that it is the same and we can get this bitch under control. I am kind of hoping that we can get it in remission. I know we will never cure it in my life time, but I’m hopeful we will be able to control it.

Getting my head together

Dec22

I’ve been seemingly doing absolutely nothing but binge watching food network this week. But in reality I’ve been doing a lot of thinking and figuring things out. A lot of self talk and some coming to reality conversations with myself.

Friday, Pete and I went out to dinner. I mean, Montana Club nothing over the top, but it was nice. Then we came home and played games and listened to music which was also fun. But it was noted that I am NOT a good loser at all. But when you are playing hangman and they guess your word and then just take down their word and don’t tell you what it is…well, that’s just rude! (StarWars…the word was Star Wars. Which in reality is 2 words so he should have been disqualified but, whatever.)

On Saturday the PlumTree Events team all went out for dinner and crafty stuff. We went to Mustard Seed. And I am so glad I did this. These ladies really keep me going. They are fun and I’m glad I have them. After we went over to some ceramic shop and painted things. That too was fun. They are WAY more creative than I am!!! I can’t wait to see their things! We talked about what type of events we want to do going forward. And everyone pretty much is on the same page.

Sunday we watched the World Cup and then Ashley’s (my DIL) friend Natalie was up this way so we met for lunch. It was good to see her again (we just saw them for thanksgiving) but to talk with her and just catch up was nice. It was so kind of her to reach out to me to meet up. It makes me so happy that they have such a wonderful group of friends.

Monday – Wednesday I watched a lot of Chopped and Love it or List it. I’ve also slowly been figuring out what I’m going to do with myself and my business. I have just gotten to the point where I know I’m going to have to every day (which I actually did today…sweated and everything!), get enough sleep, meditate and watch my portions. While I’m sitting around waiting I might as well come up with my own plan. Pete comes home with new information and studies he’s read. I act like I don’t want to hear it and dismiss it but I listen to him.

Oh and Monday was my birthday. I stayed off of social media so that was good and then Tuesday my rocking chair came in. I had no idea there were so many health benefits to a rocking chair. Go ahead, google health benefits of rocking chair.

I’ve had so many people sharing their infinite wisdom with me and things they have read. So I have to spend time weeding through everything and figure out what makes sense to me and then bring it to my Oncologist. I mean I get it that people are trying to help but maybe frame it as “Hey I saw this study and thought of you, when you get a chance, read through it and talk with your oncologist to see if it’s something that would be beneficial.” I’m going to take that much better than “I saw this and I do this and it can cure your cancer.” First people…my cancer can not be cured. I’m learning to live with it. Maybe I will be lucky and it will go into remission at some point for a bit. But it will always be there! If you found some bean or herb from the amazon that will cure cancer, I want to see the papers on it.

Here’s my take on this stuff. Placebo effect. If your mind thinks that something is working it will seem like it’s working for a period of time. To me this can only work so long before it stops working. I have yet to see definitive papers and studies that a lot of these “cure cancer” or “keep cancer away” remedies work. Although Pete came home with a study that said that something like 84% of people with stage 4 cancer who exercised lived longer than those who didn’t. Not exactly what I want to hear but, fine…I’ll do it. I mean I sometimes think this happened so I would finally. Take care of myself. THIS is how stubborn I am.

I do NOT like people throwing prayers at me. That is to make themselves feel better. My thought and prayers and message to you is: I appreciate you wanting to help, but maybe this is something that I need to go through and people around me need to go through to learn a specific lesson. So in terms you can understand it’s God’s will and you shouldn’t go against him or question His decisions. I’m not a religious person but I appreciate something that gives people strength and personal power, and if that is a Christian God for you then fantastic. I don’t really want to get into a whole theological discussion but, I would hope that people would also respect my beliefs when they open their mouth to me. Because honestly, it’s not about you and making you feel better. It’s about me and finding MY strength to get through this.

The Planning Begins

Dec15

I created a Facebook group that just gives basic updates as they happen. You know, because people don’t always want to hear all the details and me ranting about everything. (I can’t imagine why!)

I have my notebook ready all divided out so I can keep track of things and have all my questions and stuff in one place.

As I was doing research and learning more about all this Metastatic stuff, I came across a site that was very interesting. And of course there was information about being a peer to peer leader. Well DUH. So I submitted my application to see if I get accepted to run a support group specifically for Metastatic Breast Cancer (MBC).

Of course then I got thinking. I’ve been looking for an organization to help raise money for and have an annual event. Well…look at that. Then of course I was thinking some more and I have been putting my coaching business on the sidelines because I really didn’t know what I wanted to do with it. Well I think I know now.

I’ve been spending a lot of time on Cancer Boards and specifically MBC boards. It’s interesting that MBC is really not known. People either don’t want to bring it to the forefront because it’s what people die from and it makes them feel uncomfortable or they just have no idea what it’s about. Honestly before I was diagnosed with cancer I had NO clue there were different types of breast cancer. And now that I’m part of the MBC community I’m learning crazy stuff about this.

Most of the funding and research is going towards prevention. And although that is wonderful, what about the people who are already terminal? There is a movement to get MBC to the point where it’s not a death sentence, that it would be looked at as a chronic condition. But because of the lack of education and research funding that isn’t happening.

I’ve never been someone who was passionate about anything really. I mean okay, yeah, I feel strongly about certain topics but nothing I have been truly passionate about. Even with just a cancer diagnosis I was kind of distancing myself from it because I didn’t want it to define me. I just wanted it to go away. But with this, it’s different. Maybe because my life is kind of on the line here.

The first 2 days after I was diagnosed were rough. I was scared to death and had no idea what to do. Now as much as I love to sit around and binge watch shows I am going to just sit around and wait to die. I mean that could take years and what a waste. I decided I was going to take a week off to think and figure out things in my head. How do I want to spend the rest of my life, whether it’s 1 year or 15 years? I know that studies have shown keeping busy and staying active helps you mentally and physically to live longer. SO, that’s what I’m going to do.

The one thing I haven’t quite figured out is my business. It’s not a “am I going to keep doing this” sort of decision, it’s more of a “what direction am I going to take this in.” What is most important to me and what am I truly passionate about? I don’t know that dealing with weddings is where I want to go. Or maybe I do a specific type of wedding. I just have to do things that truly have meaning. I have always had this thing where I need to help people…and I’m talking people who need it and appreciate it.

You know I do things what I think is blindly and somewhere down the line it all falls into place.

And so we begin

Dec13

Had the call with my oncologist today. I don’t think she appreciates my humor though all this at all.

The first thing we are going to do is biopsy the bugger. I will know when that is this week. Yay bone biopsy. I have been told that it’s going to suck ass pretty good.

I saw the pictures from the PET scan. So, that was interesting. It’s in my sternum, rib, spine, pelvis and hip. This actually explains a lot. I mean it’s kind of scary. And I keep wondering if some meds weren’t working at some point or what happened. I suppose it doesn’t really matter at this point. I mean here we are.

After the biopsy we see if it’s still ER/PR+ or if it has changed. This will allow the doctor to come up with the best plan of action. But from what my Onc said it will be a more gentile treatment than the first time around. Last time we were sprinting, this time it’s a marathon.

Random Thoughts

Dec12

I’ve been trying to wrap my head around all this stuff. Logically I know what I need to do, but emotionally I’m a mess.

I did decide to just take some time to figure out what I’m going to do and the best way to approach this. This includes seriously prioritizing what is important and not important to me. Everything right now seems like any small step or decision is at least a step forward.

Last night I started to read the Olivia Newton John book, Don’t Stop Believin’. It’s okay. A lot of good perspective in there. But as much as I love her, something about someone who makes millions of dollars and has access to things normal people don’t seems a little unrealistic. But nonetheless there are some good perspectives.

Everyone one’s journey is so different. It’s really hard to find something that is right on what you have dealt with. Maybe if enough people tell their story, someone will find one as close as possible to theirs to gain strength and perspective with.

I’ve been doing a lot of pondering and so far where I am is:

  1. This is complete and utter bullshit and I am NOT happy about it.
  2. What the actual FUCK! I mean seriously…WHAT. THE FUCK.
  3. Okay get your shit together because this is what you are dealing with whether you like it or not.
  4. Stay positive. It may not cure anything but it will help with treatments and not stress you out.
  5. Seriously? I mean what the fuck?
  6. I honestly don’t have to do anything I don’t want any more.
  7. I don’t have to worry about reoccurance
  8. Keep busy with things you enjoy
  9. Fuck!
  10. Live life to the fullest. Enjoy every moment.
  11. Don’t dwell on the situation. Pondering and thinking and obsessing over it isn’t going to change it or make it go away.
  12. Everything is going to be fine.
  13. Well this is a set back I wasn’t expecting.
  14. WHAT THE FUCK!
  15. I can eat ALL THE THE THINGS!
  16. Let’s go skydiving!
  17. To make sure that you feel the best for as long as you can you need to really watch what you eat, exercise, get enough sleep and take care of yourself.
  18. SLEEP!!!!
  19. Where’s that list of things I want to do?
  20. How am I going to approach my business and where do I want to take it?
  21. The reality is I have like 5-10 years probably so why not just carry on and not make any changes at all?
  22. I have to look at this as having any other disease. Yes, I am going to have to change some things to accommodate treatment, but that’s it.
  23. I could totally get hit by a truck or struck by lightening. You just don’t know!
  24. Everyone is going to die. It’s not until you are faced with your own mortality that you start to worry about it. None of us knows when our life will end, so make the most out of each day you have.

Enter Stage Right, Maleficent

Dec11

Thing have been going pretty good. About 6-8 months ago I started to get a pain in my sternum. I just figured I slept on it wrong because I am kind of one of those all over the place sleepers. I was doing a wedding on June 16th and this feeling I haven’t felt in a long time came over me. I actually said to myself out loud, “It’s back.”

I have been going to the oncologist every 6 months and nothing seemed out of the ordinary. I mean yes I was tired and having bone pain but we figured it was because of the Tamoxifen. So we decided to take a break from it for a bit and then get me going to start exercising more while I had the energy and hopefully develop a habit that would override the affects of the meds. We were talking about these new meds and I was concerned about my heart. I mean having a family history of heart disease I figured this was something that was probably good to consider. So they made a referral to the cardiology department. They found my blood pressure was a bit high for their liking and had me track it and set up a CT scan vs an Echo just so they could see more.

Results came back with a sclerosis of the 4-5th rib and sternum, and some nodes on my lungs. So okay, we are now going to do a PET scan because of findings. Now keep in mind I’m all worried about my lungs because well I am. And this sclerosis with the sternum and ribs figured okay well that’s why that hurts. Again not thinking much of it at all. Note the cardiologist seemed unusually upset and weird and said they were going to turn it over to oncology. Okay, note I’m still not thinking anything major except for these nodules on my lungs! Oh, but my heart is just fine!

While I was waiting for the PET scan day to come up we went down and and the most amazing time with the kids in Colorado. Everything about it was great. It was so good to be around family and friends for a week!

Come back have to wait like a week before. So threw myself into work because that’s what I do. Then PET scan day comes. I’m trying to not freak out on the way there. I mean, nothing that will change the outcome for better or worse so no need to react.

I pull my shit together, they get me prepped. Yes Valium is a marvelous thing. Do the whole test thing. Great.

The first thing I do is go get a cheesesteak, kandy kakes and butterscotch Oh and vanilla cream soda. I mean I feel I deserve this.

The rest of the day I just tried to keep busy checking MyChart every 5 minutes. No results yet.

The next morning the results come through. I’m reading and everything looks good, lungs are good and I’m like “YES!” I scan through everything else and then the phone rings. My oncologist. Dr Scott. She is very upset. (Why are all these people upset all the time!) And she runs through and tells me what everything means. Something about Stage IV, terminal, metastasized to bones, not curable but can be treated, this is what will take your life. I’m still not comprehending much. So I’m like, um…so what exactly are you saying? She repeats what she said. I’m like oh, so I get to see you for the rest of my life. She kind of laughed and said yes.

Hung up and just kind of laid there. Then it started to hit me. I sent the findings report over to Pete and let him know. He called me and said he was coming home. I’m like, no, it’s fine. Well no it wasn’t. Next thing I know Pete is home. Lots of crying on Friday and talking about what we were going to do and not going to do. We went out to lunch and ran some errands. Then came home and drank.

On Tuesday we have a meeting with Dr. Scott to go over all the details and talk about treatment.

It’s all very surreal. I’m not going to just sit around and wait to die. I have heard of many people living years with Stage IV especially Mets to the bones. So I’m just going to keep doing what I’m doing until I can’t do it any more. I mean we are all going to die and it’s not until something like this happens that you understand your mortality. But it’s very different this time around. I mean at least now I don’t have to sit around and stress about whether or not the cancer will come back! Like she’s here and here to stay, so we are going to figure out how to live together as long as possible. Like having a roommate in your body. Bitch better not get out of line!

Now of course I had to name her. I mean, the initial cancer was Cruella. But this one is different. She’s the ultimate villain. She’s not going anywhere and she’s in til the end. So what better villain than Maleficent! I mean she’s the ultimate. And just seems very fitting. So from here on we will have the tale of Maleficent and of course the inevitable Dragon Maleficent.

On a more serious note. I will be spending some time pondering what my priorities are and exactly how I want to live out the rest of my life. I’m not going to stop working quite yet. I think it will keep me going. I will eventually have to change some of the things I do that are more physical, but I was moving towards that way anyway.

I’m also going back and forth between giving a shit and not. I mean part of me is like, what the fuck do I care? But I don’t know if I can really ever do that. I guess we will see.

Next update will be after the meeting with Dr. Scott and THE PLAN….

Crazy Ideas

Feb14

I said I wasn’t going to come back to this site, but I’ve been doing a lot of thinking this past year. I mean one can’t just end this! There is still more to the story.

I don’t want people to get the impression that once treatment is over that’s it. Since I’ve shared so much of myself through here, I should share all of it. The biggest thing is, what happens next? I mean you stop treatment and everything is back to normal. Far from it.

I try very hard to not let all of this define me. I don’t attend support group meetings anymore. I don’t talk about it much at all. Every now and again I may make a comment when someone doesn’t want to be bothered getting a mammogram. But its like I just want to pretend it never happened. It seems some people become all consumed and being a “survivor” consumes them. Others would rather no one knew. I would like to find a balance. I don’t want to be THAT person who makes everything about cancer. But I realize I can’t disregard it because its a part of who I am whether I like it or not. I still am being affected. As much as I’d like to say I’m 100% over it and everything is just like it was, I’d be lying.

2016 the year of cancer

2017 the year of recovery

2018 the year to rebuild

2019 the comeback

They say it takes a while to get back some sort of normal. I can honestly say that now coming up on year 3 I’m just feeling like the fog is being lifted a little more and things are becoming clearer. So my biggest piece of advice AC (after cancer) is to be kind and patient with yourself. Some things will eventually go back to normal, but a lot of things won’t, at least they haven’t for me yet!

Ultimately, I’d like people to find this so they find some comfort in the unknown. Yes, everyone’s journey is very different. No two people react the same. I just remember how scary and devastating everything is.

So here’s to the next section of the journey….

 

New Direction!

Mar25

Greetings all.

So I feel like I’ve come to an end of my journey here on this site. What started out as a blog to help me track my progress in getting healthy and getting in shape in my 40s turned into my cancer blog. It’s been a year and 4 months since treatment ended. So it’s time for me to move on. I feel like I’ve graduated to Diva at this point and no longer need the training!

20180313_102118

It has been fabulous to have an outlet through the whole cancer thing. I hope that I have helped and inspired at least one person who went through the same ordeal. As you can see from the picture, my hair is back, and with my prosthesis in you would never know I ever went through anything. Mentally I still have moments of panic. I still wonder what if. Every now and then I have a moment, especially when it’s something emotional. But for the most part, I’m good. I don’t cry every day anymore.  I don’t fear going to sleep because I think I’ll never wake up.  And I’m pretty sure if it comes back, it will be okay.

I’ve come to terms with the way my body is now and I’m really okay with it. People seem horrified when they find out I never had reconstruction. It’s okay. I quite enjoy taking the foobs off at the end of the day! I am not exhausted all the time like I was. I still have pain and days I don’t feel well. But I think between the medication and old age it’s about as good as it’s going to get. I can exercise, play tennis and I’m starting to add some weight to my workouts. I still have to stretch my arms and shoulders every day or they tighten up. I have to be careful what I eat because my chest area will swell. Yeah, that’s a new feature I’ve obtained. But it could be worse.

I feel like for the most part, I’m over all the after-effects of cancer and treatment. This is about as normal as I think it’s going to get! So I close the book on this chapter of my life and start a new one. I am moving over to www.erikasherek.com. Here I’ll be talking more about what I’m doing and my goals to get back in shape as well as the hobbies I have and the goings on at Sherek Acres!

I want to thank all of you for your support over the last few years. It has meant the world to me. This site will still be up for anyone who wants to reference anything or has questions. I am always available to answer questions or to just vent at! Hopefully, I won’t need to come back here except when I want to reflect. I’m banking on not having to add to this blog anymore!

Always be fabulous!!!!

Erika – Full Fledged Diva

 

 

The Silent Hell of Cancer After Treatment

Jan12

Everyone thinks that once you finish chemo, surgery and radiation it’s done. You go right back to normal and aren’t you the survivor for getting through all that. Yay you!. Well, I sometimes think during treatment is the easy part. They tell you where to go, what you are doing and why. You spend a year just doing what you are told and try to keep up your strength to make it all happen. Then treatment ends. And when it ends. It just ENDS! Sure, you go in for follow up appointments that you have panic attacks over starting a week before. But no one talks about all the physical damage that you are left to tend to.

Right after you finish treatment you have a few days of excitement because you are done. Then you start to freak out and get depressed and anxious because all of a sudden you have no one to tell you what to do and you have to pick up all the pieces and put your life back together. It takes a year or more to get your mental capacity to work correctly. Right about the time your mind starts to work you then realize that your body is an absolute mess.

Yesterday I had an appointment with my Med. Onc. We did bloodwork again because I have some numbers that are out of wack and we are trying to figure out why. But they ask you all these questions about pain, which in the past I’ve brushed off. Well, when you have ER/PR Positive breast cancer you get to take these really cool meds for the next 10 years. I got to be put on Aromasin (exemestane).  I started out doing Lupron shots every 6 months to stop my ovaries from producing estrogen, and then the Aromasin to inhibit any estrogen that is still being produced from other sources. There are side effects to all these. I was in a really bad place after my last Lupron shot. I was just miserable. So we decided to just remove my ovaries so I didn’t have to endure the lupron any longer. Fabulous. At this point, I’ve been in menopause for the last year. And when you don’t have any estrogen being produced in your body, it starts to break down and change.

Right now because of the extream bone and joint pain I have, I’m stopping the exemestane for a few weeks to see if it gets better. If it does then we are switching me to Tamoxifen. I’m kind of hoping that this happens because then I won’t have the bone pain for sure and my hair will get thicker. (in theory!!) Oh…when you take exemestane it thins your hair so you see your scalp. Although better than being bald, it’s just unnerving.  But Tamoxifen is supposed to strengthen bones. So that would be nice. I would love to move without pain!!

A major issue that no one talks about with breast cancer is what happens to the ladybits. One of the major drawbacks of not producing estrogen is vaginal dryness. And I’m not talking you can just use some cream and it’s better. We are talking full out atrophy. Imagine your lips chapped to the point where they are dry cracked and bleeding. It hurts to talk. Same premise. They tell you to use over the counter suppositories but for some people, it doesn’t work. Yay! I’m some people. Now we have to sit around and talk about my lady parts to everyone.

Let me just say that when you go through breast cancer you lose all your inhibitions about your body. You have had more people look at, examine, study and touch your breasts that it doesn’t phase you anymore. And once you don’t have any breasts it’s very strange because you still cover up and hide things and there is nothing to hide but two really big ugly scars and a huge brown/gray circle where the radiation was done. So you ALWAYS know exactly where it was! Yes, I’m a little bitter about the whole thing still. I was not given the option of reconstruction. I was told by all my Drs. that it would probably be best if I didn’t. I didn’t push it because honestly…I heard the surgery can really suck, especially when you weren’t set up for it after a DMX. And I do actually like not having to worry about them.

Okay so now we are going to talk about the only thing I have that distinguishes me as a woman (in my eyes). And that doesn’t even work anymore! It hurts to do everything! So they have this procedure called the Mona Lisa Touch. I have been told about it for the last year. At first, I blew it off because…I won’t need it! I’m too young to have to worry about this yet!. HA! You also just went through a year of hell and yeah…you need to worry about it. When I was having my ovaries removed my Dr. (bless his heart) said that it was really bad and there was no discussion. I had to have this done. Okay. sign me up let’s do it. I had to wait until after my surgery to schedule it so I could heal from that.

Let me just explain. Insurance does not pay for this. As I was told…When the machine and technique came over to the US they didn’t want to have to wait for all the correct paperwork and regulations so they designated it under “cosmetic.” And insurance won’t pay for anything “cosmetic.” My argument is that if you are a cancer patient and insurance will pay for reconstruction of breasts…which is cosmeitc….they should pay for the reconstruction of your lady parts! But I digress.

I was told that it took like 5 minutes and was painless. Your initial treatments are 3 sessions 6 weeks apart and then once a year for maintenance. Okay. No problem. It costs $1950 for the first 3. $750 for each individual treatment. Well, okay, let’s do it.

I go in for my appointment. They explain what everything is and how it works. Basically, it’s like microdermabrasion on your ladybits….inside and out….with a laser. The whole thing is to remove the layer of skin that is atrophied so it can produce collagen and become healthy. Great!  There is a metal cylinder with markings on it, the actual machine and then a vacuum to suck up the flying debris of skin. Doesn’t this sound like it’s going to be fun?

They put a lidocaine cream over your bits and let you sit there for 7-10 minutes so you numb up. (wait…why do you need to numb anything…I thought this was painless!!!)

They come back and ask if you can feel anything. I’m like, um, yeah I still can. Well, my bits are atrophied to the point where I guess we are not going to get all the way numb. Yay! At this point, I’m super excited about the whole thing. They give you some cool glasses and a mask to put on. Of course, I ask why we are doing this. And it’s because of cells flying and well…this laser.

The first thing they do is a pH test. Evidentally the pH level of the vaginal area should be between 3.5-4.0. Who knew. Mine was 7.4. Yep….not good. As we do each procedure the pH level should go down as everything gets health, er.

Okay lets do this! They insert the cylinder. Fantastic. Then they insert this other thing that has the laser and also vibrates. It’s a very bizarre feeling, but it doesn’t hurt. Whew! Up until this point, I’m good. Then they start.  You’ve got the Dr doing the procedure and the nurse assisting. They start inside at the top and work their way down. For the most part, it was fine, every now and then it felt like either a pinprick or someone dragging a string along your skin. So I’m like, this is doable. Then they get towards the end. This is also where it’s the worst. And OMG. I felt it. Now I couldn’t feel all of it, just the parts that were super bad. Take that same pin, switch it to a larger needle and start jabbing. I jumped a few times, but it was tolerable. The last part they do is outside the vaginal canal. They go from the clitoris down to the perineum and everything in-between. It wasn’t excruciating, but it wasn’t pleasant either. I held my breath the whole time and I do have nail marks on my hands from holding them together. They did ask if I wanted to take a break at any point, and I said no. I didn’t curse at the Doc and tell him off…so it wasn’t completely awful.

When you are done they give you an ice pack. Yep. ice is good. It’s hot, it burns. This goes away after a few hours. Then you apply Aquaphor for the next few days. (no baths, clean the area 2-3 times a day and keep it moisturized while it heals) The whole thing from start to finish took about 30 minutes. So a little different than that 5 minutes mark they say.

Afterwards, my poor doctor just felt so bad that I was in any discomfort or pain. It so wasn’t his fault. I mean. the nurses who have reached menopause who had it done did not have the same experience I did. They did not have any pain and it didn’t take as long. I think if you are getting it done due to cancer treatments it’s not going to be a la la walk in the park. I mean why would it be. When you go into menopause naturally it’s gradual and your body has time to adjust. When you go into menopause medically, BOOM! You’re here! No gradual anything and it’s a lot harder on your body. Besides chemo and the medication you are on amplifies everything. So just keep in mind when these nurses say they had it done and it’s a piece of cake, they are coming from a different place than anyone coming from Cancerland.

When I got home I laid down with my ice pack and just rested. I did take some ibuprofen to help with the pain and discomfort. I removed the icepack about 5 hours after the procedure. Oh and the first time you have to go to the bathroom it hurts like a bitch! Sleeping was a bit uncomfortable. There will be blood so don’t freak out. That’s normal. And it doesn’t last. I mean, you just got a layer of skin obliterated from your body…

Today, as expected, everything is itchy and uncomfortable. No pain though, just a mild stinging that is like when you have a sunburn. I’ll lay low today and tomorrow should be even better.

I do believe that the next session will not be like this. I think it’s like when you get a really bad sunburn and the first time you put anything on it, it hurts like a bugger and then it gets better each time you do it. I do believe that the next procedure will have less pain and won’t take as long. But of course you know that I will do anothe update!

The next step in become a real girl again.

If anyone has any questions about anything please don’t hesitate to ask.

DX: 2/9/16 | Breast Cancer | Stage 3B | Chemo – DMX – RAD | NED: 11/7/16

 

I recently had a friend who made a comment about being at a store and a lady in front of her started talking to her about how she just had this procedure done. My friend was appalled that anyone would talk about something like this and with a complete stranger. I know to normal people it seems very odd. But until you go through it, you can’t possibly understand. When you have been in pain and suffering and you finally get a treatment to end it, it’s amazing. You are so excited that you do want to share with everyone. The fact that this is available to women and we don’t have to suffer in silence anymore is major. All I keep thinking about is all the women who can’t afford this and continue to suffer because insurance won’t pay for the treatment. It’s a very emotional subject that women haven’t been able to talk about. I feel so blessed that this treatment is available to me and that I’m in a situation that I can afford it.

I’ve got to do some research to see if there is any assistance for women to get this done. Noone should have to suffer.