update to the update

Kathi commented on my last post about the steroids not causing ulcers, I just wanted to clear up they aren’t trying to tell me that it’s an ulcer – there are no holes in my stomach, just no stomach lining – their guess is that the steroid shot, ibuprofen, Excedrin, Aleve, & ther pain meds (including percocet from recent surgery) and made it weak. The mucus lining of my stomach is mostly missing, so anything touching it caused even more inflammation and bleeding. I know they think it’s from pain meds (specifically from 4 years of chronic pain. I don’t take as much pain medication as they seem to think. I was pregnant for 9 months, then breast fed for a year and didn’t start going to the pain clinic until September (when I was done nursing the baby) & the amounts of meds I started taking once I was done nursing was minimal & and not for long enough to have caused this kind of damage – which is why I’m confused. But anyway, no one has used the word ulcer at all… they’ve had me on something called protronix to help build the lining back up. I forgot to mention when posting yesterday that during the scope procedures my colon looked just fine. He did find some sort of lump in there which he removed and sent off for biopsy. He didn’t think it looked cancerous, he just thought it best to check. It’ll be a week before I hear back on the pathology report on that.

So I’m still here for this morning – not sure what will happen, but the bleeding seems to have stopped, er, uh, at least stopped coming out anyway. They just took my blood, so I’m waiting to hear what the count is. They have typed my blood (as they call it) and there is enough ready to go if they decide to give me a transfusion. The weird part, other than being sleepy, I feel fine!

They just gave me some solid food (well, the hospitals idea of solid food anyway) so that’s probably a good sign. So I’m still just sitting here, waiting, but I should know more later, just not sure if I’ll have a chance to blog about it. Today is the day that we are supposed to go back to California – the end of our ‘vacation’ – Travis, Steven and Brady just arrived and the car is all packed ready to go, hoping for the best that things are good and I’ll be sent home. I just don’t know yet. Hopfully soon.

Thanks again for all of your care and concern, it means so much to me!

hospital update

Update: I’m still in the hospital. During the procedures the doctor found my stomach lining is inflamed and rather raw. All (or most) of the protective lining is gone. Without that lining, anything that touches the stomach causes it to bleed. – hence the blood loss. A theory is that it may have been in a weakened state aleady but the steroid injection and other pain meds that I’ve been on for the chronic muscle pain may have aggravated what was already aggravated. This is the doc’s best theory for now. They started me on medicine that will help to rebuild that stomach lining. The bleeding seems to have stopped, or at least slowed considerably. My cell count that had gone up to 30 was back down to 26 again, but that was as of this morning and they won’t check it again until tomorrow.

So I’m still here under observation. If the bleeding seems to still be going on tomorrow I’ll have to swallow some small little cameras and they’ll have to see what they can find from there. If my red blood count is back up, then things are probably okay, and then we can go back home.

I may have some of this mixed up or wrong, but this is the best that I can piece it together.

I can’t help but find it more than a little jacked up that the heavy duty epidural steroid injection I had for pain probably worked. I haven’t had any real muscle pain for 2.5 days now. So it looks like it worked…but that it also caused this. I’m not sure what tomorrow will bring when the doctor shows up. I’m not sure at all about what caused all or any of this. I just feel sad that my vacation with my family was ruined, that I found something that may have stopped the chronic muscle pain, and it may be the same thing that caused this problem.

What I do know is that I’m really tired (thank you sleeping pills), and I didn’t spell check this, and I’m sorry about that – but I’m going to put this on the blog and shut the computer down and let the sleep overtake me.
Also want to say a quick thank you to all of you who took the time to wish me well & offer to help. That’s so sweet and I very much appreciate it. By the way, getting sick in the middle of Utah isn’t so bad – they have some of the nicest, most attentive nurses I’ve ever seen. That always makes a hospital stay easier.
Grub just got dropped off – I am now on a full liquid diet – so pretty much slop of slop and some milk is what it looks like from here.

Sorry about not answering much emails/facebook, I haven’t been on the computer that much. Thanks again for the well wishes

Thanksgiving in the hospital

I almost didn’t make it around to blogging today. I have bigger problems than keeping the nablopomo commitment I made to myself. I’ve been in the hospital since yesterday afternoon, not long after finishing our Thankgsiving feast. So to remind you, we drove from California to Utah on Wednesday to spend the holidays with some family. So when I say I’ve been in the hospital, I mean in the hospital in the middle of Utah, an hour from my brother’s home in a smaller rural Utah town and even farther from my own home in California.

I don’t want to gross anyone out with details, but I’m here because of internal bleeding that didn’t stay internal. They suspect the colon but there’s been too much blood for them to run the scope through yet. Scopes are great and all but they can’t see through rivers of dark red blood. With all of that blood coming out they couldn’t send me home either. The red blood cell count of a healthy female should be about 48, mine was 26 at last count. Starting a few hours ago they had me drink this lovely (not!) cherry flavored colon cleanse to clean things out as much as possible so that when the surgeon looks in there, he’ll be able to see something other than blood. I hate, detest, despise, double hate this drink – high intensity bowel cleanser, stomach cramping free of charge. I almost don’t even care that I haven’t been allowed to eat anything since about noon yesterday.

So tomorrow morning I have an endoscopy and colonoscopy scheduled to try to find out what’s causing the problem. It’s a little hard to not freak out about this. Seeing that much blood leave my body has me a little on the down side as you can imagine. Not knowing why, well, it’s easy to let my mind go down some bad avenues. Not exactly how I imagined our vacation going.

But hey, I still managed a daily entry, but no promises for tomorrow.

Thanksgiving

This is a day in America most people gather together to enjoy a feast of turkey, stuffing, mashed potatoes, sweet potatoes and a desserts galore. This is a day of family, food, football (or Twilight Zone marathons when I was younger). It’s a time to reflect on all of the things in life we are most thankful for.

Yesterday we made a long trek in our little Mazda 3 from California to Utah and arrived exhausted in the wee hours of the morning. The hustle and bustle of getting out of the car and bringing all of our stuff in woke Brady up and he stayed that way until about 5:30 am. I was hoping that he would have slept until 8:00 or 9:00 a.m. so that we could too, but no such luck. He was up at around 7:00. Needless to say we are holding our eyelids open with toothpicks right about now.

Regardless of that I sit here in my brother’s living room feeling grateful for many things. I am grateful for the love and support of my family and friends both old & new. I’m grateful for the close relationship that I share with my teen son, Steven. Some parents get nothing but trouble from their teenagers; I know how lucky I am to have such a bond with him. I’m so happy that Travis & I had Brady – it’s easy to count your blessings when looking through the eyes of a small toddler. I’m always thankful for the love that is shared between Travis and me. I’m appreciative that I found it within myself to take a bad situation, and not just make it better for myself, but to have found this warrior within who also does her best to make things better for others going through the same thing. I’m thankful that I have a voice that is being heard. That wasn’t always in my reality. I’m happy that I have the ability to look at myself and make changes and adjustments as needed. To never change is to never grow.

I try to my best to have a sort of thanksgiving whenever I can, all throughout the year. I don’t mean that I cook a big feast – I mean that I try to find the time to think about all of the things in my life that truly make it worth living. And there sure are a lot of them.
Happy Thanksgiving everyone.

Update & BRCA Sisterhood on Facebook

Hello, hello! So yesterday launched the beginning of our BRCA Sisterhood group on Facebook – the response has been phenomenal! So many BRCA women coming together like this is amazing. It’s truly incredible to be not just a part of this, but to be one of the Ringleaders. Not a position I ever imagined myself being in before, but it feels wonderful to be a part of something so spectacular. Just want to thank all of the ladies for being part of the welcoming committee! Aunt Lita, Trisha, Lisa E & Lisa R, Rian, Colleen, you ladies are beauties! I’m running out of adjectives to describe how happy I am about this.

My partner in crime, Karen Lazavoritz, sent this note out yesterday to update all on our Oprah or Bust mission. I’m pasting her words below:

We wanted to send a follow up email for our Oprah or bust campaign. Teri and I are overwhelmed with the outpouring of support from all of you. We never imagined that so many of you would want to get involved and share your stories and we thank you for the wonderful letters that you all took the time to write and send. We both have hopes that we will still get noticed even though Oprah is going off the air in 2011.

We have been brainstorming over the last week or so to see if there are other venues that we can target to help raise awareness, and that’s why we have been a little bit quiet since this whole Oprah thing began. We have a few ideas but with the time difference between the two of us it’s taking a little longer than we anticipated but bare with us, there are more ways for us to get noticed. Oprah is not the only one who can help spread awareness.

As we explained in our letter, we wanted to focus on women who do not have cancer and we did not want to focus on any charitable organizations or any fundraising campaigns. The reason was not because we didn’t feel that this was extremely important, our goal for this letter was to focus on the actual “sisterhood” of women who have connected through all walks of life because we all share the same mutation. We have all found each other and feel an outpouring of support by the personal contact and friendships we have made. We still feel that this is a very important focus and we don’t want to give up on our mission to educate and create awareness.

We have created a special facebook page where all of us can come together and follow up on each other. It’s called BRCA SISTERHOOD. It’s a common ground for us to laugh, cry, scream, vent and really form bonds that will last a lifetime. I know that I speak for myself and Teri when I say that the friendships that I have made through this process will continue for a lifetime and although none of us wanted this mutation, I know that we are grateful for this special BRCA sisterhood.
Here is the link

http://www.facebook.com/home.php?ref=logo#/group.php?gid=222632592032&ref=mf

There is also the BRCA umbrella which was created by Leigh Ann Jones, It’s pretty amazing and there’s a section for reconstruction photos for those of you who want visuals.

http://brcaumbrella.ning.com/

We hope that all of you will share this with other women who are in the same boat. No one should be alone on this journey whether it’s the beginning or end of it. We all feel connected, we all care about each other and we all realize that it’s okay to be afraid. We’re not alone. We are all there for each other, we are the BRCA sisterhood.

Much love,
Karen and Teri
xoxo

If you are BRCA+ and want to be able to connect with others like yourself in the interactive type of environment like Facebook, please join our BRCA Sisterhood group. We just started it yesterday and it’s buzzing like bees on honey. Come be a part of it with us.

I want to wish you all a wonderful Thanksgiving. I’m getting ready to hit the road today to travel to Utah to meet up with my family. I also get to meet fellow blogger, Janine & her DW, while I’m out there! Even with the travel and being on the road, I only have a few days left of Nablopomo and I have not missed a day yet, so I will do my best to continue on

Do I Deserve to Live?

I came across this article recently and it really got me up in arms. The ill fitting title is “Breaking the Chain”.

This article bothers me so much because it’s made to sound as if these babies were given a chance of sidestepping their ‘genetic misprint’ – but upon reading the article I see that’s not exactly what happened. The vast majority of it is written as if this is great news, in a hopeful light – but when you really think about what this means it makes me want to jump up on a soapbox and maybe punch someone in the nose – and I have to say, I’ve never punched anyone in the anything before!

They checked these babies while they were 3 day old embryos and made sure that they didn’t carry the same mutation as their mother before they were chosen to be implanted into the woman’s womb. I’m glad they didn’t do this to my mother with me, or I wouldn’t even be alive right now! I got even more upset was when I read this line: “Three of the seven embryos carried the BRCA2 mutation and were discarded,” says Nomi Weinberg, a technician in the human genetics department’s molecular laboratory, headed by Dr. Dvorah Abeli¬ovich. “Discarded” – isn’t that a nice word? To think that I could have been discarded because I wasn’t going to be born ‘perfect’ sort of has my blood boiling.

Me & my brothers as children

How about rather than making sure people like us with our ‘genetic misprints’ aren’t born at all would be spending valuable research time and dollars doing something to FIX the mutation that exists, so that it doesn’t pose the same problem that it does now? They’ve cured a multitude of diseases, childhood vaccines are given at regular intervals to prevent many things that used to cause death. Why not a ‘cure’ for BRCA mutations? Wouldn’t that be better than ensuring that people like me weren’t born in the first place?

Over this past year I have met some truly incredible women – I mean IN-FREAKING-CREDIBLE women. I know many smart, witty, beautiful, strong, funny BRCA1 and BRCA2 mutated women who have made a positive impact on the world around them and continue to do so. Myself included! And we’ve done that while being ‘mutated’ and entirely ‘not perfect.’ In fact, in my case, most of the good I’ve done has been since I found out about my mutation, and because of it!

I found out about my BRCA1 mutation when I was 38 years old. This past year since I’ve learned about it has been very hard on me, of that there is no doubt. But would I wish to have never been born because at some point in my life I’d be faced with some stress of learning my chance of getting breast or ovarian cancer was higher than the next persons? I don’t think so! So yes, it’s rough having to make choices like I’ve had to make, and some others who have this mutation were not as fortunate as I am to have known about it before cancer entered the scene, but would that mean that they didn’t deserve their chance to live at all? Ever?! Do they not have the right to make their mark on the world? How about the right to at least try to fight the cancer and carry on? I say of course they have that right! Even if, as terrible as it would be to die from the cancer that hits people like me, we still have a right to life before that happens. A right to be happy, and do good, and yes – a right to have children, a family, and be productive members of our society.

Just sort of wondering where this would stop. Is it okay for someone with bad eyesight to be born, or should they be discarded too? How about those that are born deaf? Discarded? Down’s Syndrome? Muscular Dystrophy? Discarded too?

I feel that with all the money that has been raised in this world for the fight against cancer – and may I add that much if not most of it has been raised BY people with cancer, or their loved ones – what kind of injustice is it to use the gift of science to make sure that ‘imperfect people’ are never born? Why not put that effort to better use?

Thoughts

On 11/13 I received a packet of info from the Center for Restorative Breast Surgery in New Orleans. I have glanced through it, but when I saw that it was a stack of my appointment cards (pre-op, op & post-op) and a booklet (yes, a booklet!) of stuff I need to do beforehand I just closed it all back up and set it aside.

That really is out of character for me. I don’t usually procrastinate taking care of important things! But, well, what can I say. I just didn’t want to read it all yet. Last week, the travel dept from the center in NOLA called me and as it turns out, they were able to make all of my arrangements for me. They booked my hotel and flights. They have a driver that will pick us up from the airport and take us to the hotel, and will also pick us up for all of my doctor’s appointments and bring us back to the hotel again. It’s a free service of the center. A street car runs at regular intervals and all for the whopping price of $1.25 each way – it can take us to the French Quarter (for dinner or site seeing). A few of our nights there will of course be at the hospital itself, and the way this place is described, it might be even nicer than our hotel! There is a bed there for Travis to sleep in, a mini refrigerator and more. If you really want more details, just read back a few blog entries ago and you can click on the link. If it weren’t for the fact that I’m going for a double mastectomy, I might look at this as a 2nd honeymoon!

Anyway, to get to the point, I checked my email today, and had one from the breast center in NOLA. It contained a copy of my itinerary – the flight & lodging. My heart sort of caught in my throat as I looked at it. Sometimes I just can’t believe that all of this is happening to me. I know that I need to read through that packet of info that they Fed-ex’d to me exactly 10 days ago! It’s been sitting in the middle of my dining room table all that time, because I know I need to read it. Or at least look at the pretty New Orleans guidebook they kindly included with the paperwork.

About 15 minutes before getting the email with my itinerary I had a call from Cedars Sinai. It’s time for my follow up to my follow up appointment for the hyst/ooph that I had in October, and I also need to have my Breast MRI. The very same MRI that I’m going to send to NOLA – they need to see that, along with some other things, before my surgery.

Maybe it was just the timing of the phone call, then the email that made my tummy do a double flip. I can’t help but keep glancing at the packet of paperwork right now as I type this. It’s sort of taunting me to read it…

I don’t doubt my decision, on the contrary, I’ve known for a long time now that this is the right choice for me and my family. It’s just everything that goes along with it that has me feeling the sting of warm tears & occasional butterflies. I’m not looking forward to surgery, recovery, revision surgery, recovery again, time away from my sons, or losing a large amount if not all of the sensation in my chest region. It’s the hardship that goes along with all of this I’m thinking about. I almost used the word lamenting, but I’m not sure if it really fits there or not.

A fellow blogger, Kayleigh, is dealing with breast cancer, she’s about to go through a very aggressive round of chemo. I feel sick for her; I wish she didn’t have to deal with this. I wish she had known before the cancer struck, so that she could be in my situation, of fighting the cancer before it even appears. I feel lucky for knowing about my BRCA1 mutation beforehand, but I still think it sucks that I have it, and it sucks that so many of us have to go through this.

I know that one day the right focus will be brought to light, so that women like myself don’t have to make these sort of choices anymore. So that this mutation can be caught so very much earlier, maybe even at birth, and fixed with a synthetic tumor suppressor vaccine or something, I’m not a scientist, so I don’t know WHAT, but something has to happen to make this right. I hope it happens soon.

The Zodiac and Wolves

I don’t fully believe in astrology but parts of it make sense to me. I’m a Libra. Libras are known as the peace keepers of the zodiac – we are lovers of beauty and fairness. The symbol of the Libra is the scales and when the scales are tipped too far over in any one direction this results in an obvious lack of balance. When this happens, I frantically do what I can to restore balance. Sometimes the action needed is for me to try to make peace, other times it’s time to pull out the boxing gloves and shout out for what I believe in. I’ll do whatever I can to regain that balance, as it’s where I am the happiest, and the most comfortable. I’m not very good at biting my tongue, or holding in my thoughts or feelings. In fact, doing so goes against who I am as a person these past few years. There have been times throughout my life where I let people walk all over me. I have let people tear me to shreds and have just stood there and taken it. Why? I did it to keep the peace and to avoid arguing, conflict or creating a war. I retreated within myself. But I haven’t been that person for many years now. These days I tend to stand up for what I believe in. I don’t look for conflict, and I don’t usually create it, but I won’t typically shy away from it anymore either.

All of these things have me thinking of the fable of the wolf in sheep’s clothing. We’ve all heard it before, but here it is again:

According to the fable, a hungry wolf came upon a sheep’s fleece lying on the ground in a field. The wolf realized that if it wore the fleece, it would look like a sheep from a distance. That would enable the wolf to sneak up on a flock of sheep and steal a lamb for its supper, before the shepherd noticed his presence.
The wolf put on the fleece, and went off in search of a flock of sheep. It spied a flock of sheep just as the sun was setting, and approached the flock. Just as it was about to pounce on a lamb, a shepherd came by, looking for a sheep to slaughter for supper. Thinking the disguised wolf was a sheep, the shepherd quickly grabbed and killed the wolf.
The intended lesson was, “Frauds and liars are always discovered, eventually, and pay for their actions accordingly.” The moral is sometimes also told as “The evil doer often comes to harm through his own deceit”.

Maybe my subconscious mind is reminding me of this fable as a way of trying to point out that sometimes it’s not worth it to get upset at certain injustices. It’s not worth it to go to war, or battle over some wrongs. Why? Because what people put out, they tend to get back. Yes, injustices can and do happen in life. Do I need to get a stomachache over people who have ridiculous claims that are easily disproven? Do I really need to spend even a moment of my day validating another’s petty insecurities? The answer? Sure, sometimes. Sometimes it absolutely is worth it to go to battle, to name names, to point fingers and to tell someone to back down or else. But other times, maybe it’s just best to let karma do its own job. What goes around comes around.

Strings of Sentences Put Together

If a blogger committed herself to one blog post every day in the month of November, but didn’t manage to do it, would anyone really care or notice?

It’s pretty silly, but I made this deal with myself to do this Nablopomo thing and I’ve managed to stick with it for 21 days so far. Not all of these days have been great days, not all of them have been easy for me to sit down here and write something. Besides the obvious emotional things that go hand in hand with a BRCA1+ mutant who must cut out and off her healthy body parts just to cheat her predisposition to certain types of cancer, I deal with totally unrelated major pain issues too. Hmm, maybe I’ve said that more than once in these past 21 days though. Physically I don’t really always feel like sitting at the computer trying to string two or more sentences together. But, well, to be fair, I never promised that I’d write anything worthwhile. I just promised that I’d write.

I am pretty sure that the next time I decide to take on such a big obligation, I’m going to think about it a little bit longer first. The silliest of things is that I didn’t sign a contract, I didn’t really make a deal with anyone, though I did ask others to participate. I simply promised myself that I’d do it. I figure if I can’t keep a promise to my own self, then how can I expect anyone else to keep their promises to me?

I would like to think that the majority of my posts this month have been helpful or at least entertaining. I’m sure some have. Like talking about libido after oopherectomy/hysterectomy – er, you know, the blog post where I wrote about my sex life. One day I even outed my husband as a Desperate Housewives fan, it doesn’t get a lot more entertaining than that.

Steven is in Spanish III this year. Part of his homework is to write a daily journal (in Espanol, por favor), every single day, for the entire school year – rain, sleet, snow, shine, weekend, holiday, school day, every. single. day. no. matter. what. He liked Spanish 1 so much last year, that he decided to get teacher approval to teach himself Spanish II over the summer so that he could move directly into Spanish III this year. And he did it. But required daily journal entries in Spanish III have him feeling a little teeny bit burned out – and he’s not loving Spanish as much as he once did. I can understand why the teacher would assign daily journals in Espanol – what better way to learn the language? It’s sort of the same reason I decided to do Nablopomo, because I thought that daily blogging might make me a better writer. But guess what? It hasn’t. Not really. It’s made me post some total crap on some days just so that I could say that I did it. The 3’s of me for one thing, a few posts back. The truth? I stole that from my facebook notes – I wrote it months ago – it wasn’t even new material. I should be semi-ashamed. But, well, ya know, I still posted, which means that I kept my promise to myself.

Today I’m having a hard time posting because I have several different things on my mind that are a little too discombobulated for me to want to blog about. I might want to talk about it to a few friends, or my husband, but I don’t necessarily want to openly blog about it. Surprise! I do keep some of my skeletons in the closet!

What a Pain!

This post is going to be very short (and non-brca). I went out of town to the Pain Clinic again today – well – technically to the Surgery Center behind (& affiliated with) the Pain Clinic. I had a lumbar epidural steroid injection in my lower back. I’ll know in 2-14 days whether or not it was successful. I guess it just takes some time – it works on 50% of patients, so hey, why not me? I’ve beaten other statistical odds before, so I’m hoping I will with this one too.

I was under mild sedation for the shot – the injection area hurts, I’m surprised how sore it is – it’s hard for me to sit up to type this so my computer/sitting time today is very limited. I am hoping that this was worth it – if it was then relief from my chronic muscle pain could last anywhere from one week to one year. What a wide span of time *confused by that* – well, I’m going to hope for one year!

Hope everyone has a wonderful weekend!