Spots

I have “spots” on my ischium and ilium.  We (the doctor and radiologist) are not exactly sure what those “spots” are.  I will be having a bone scan in a couple of months to look at them again.

For those of you who haven’t been in the loop, I have been having soreness in my ribs (on the side where the cancer was) for over a month now.  Looking at my CT scan from June, there was nothing to worry about.  When I brought it up to my surgeon at a routine appointment, he decided we WOULD worry about it.  I was scheduled for a PET scan the next week.  My age and the aggressiveness of my cancer are nothing to mess with.  My original tumor seemed to grow overnight.  So just to be sure, I went for the scan.

At first I was anxious.  I didn’t think the pain was a big deal at first, but now that the possibility of the cancer having metastasized was there, I worried.  But then came peace.  In fact, I barely thought about it over the weekend of waiting for results.  It is what it is, right?  No amount of stressing or worrying can change that.  I went in to the doctor expecting bad news and expecting to have him lay out a plan of action for me.  That didn’t exactly happen.  I left the office quite a bit numb.  What does this mean??

He told me that there was no evidence of mets in my ribs. (I had had a full body PET scan.)  There was also no sign of cancer in any of my vital organs.  (WOOHOO!!)  But I had spots in my pelvis-on my butt bone.  Spots?  He didn’t say cancer, he said spots.  I was confused.  He explained that cancer presents as bright spots on PET scans and these were not bright.  But they were abnormal and a little worrisome.  He tried to reassure me, but it was also his job to inform me of worse case scenarios.

My doctor ordered blood work to measure tumor markers.  If a cancer is large or quickly multiplying, it can be seen in the blood.  He said the next step would be a biopsy to see if these spots have the same pathology as the original tumor.  However, a bone biopsy means surgery as it would be done under anesthesia.  We would do an oral chemo and a shot that should strengthen my bones.  But all of this would depend on the blood work.

Even though my doctor tried to reassure me, I was sure the cancer was back.  I was numb on Monday and sad on Tuesday.  I figured I should be getting my affairs in order.  Because it is what it is, right?  But then came Wednesday and the phone call from the doctor.  My blood work came back completely normal.  Tumor markers were not elevated and the spots were not bright.  Did I want to go ahead with the biopsy?  Or did I want to sit on it (hahaha) a while?  I asked him how comfortable he was not doing anything at this time and he again tried to reassure me.  So because everything else looks great (WOOHOO!), I am waiting on it.

I am going about living my life.  IF these spots turn out to be cancer, we’ll deal with it in a couple of months.  For now, I have no evidence of disease and the holidays to prepare for.

The Aftermath

Well, I made it.  I am now 30 years old.  I got to celebrate another birthday…

They say you do a lot of growing up when you become a parent, but I think you do a whole of a lot more growing up when you are faced with your own mortality.  I have learned more about myself, my husband, and my family in this past year than I realized there WAS to learn.  I’ve learned who cares, who just pretends to care, and who doesn’t even give any effort.

I’m not sick anymore.  I could very well still have cancer in my body, but I’m not “sick.”  I’m not being poisoned by a lifesaving drug.  I’m not recovering from surgery and I’m not being exposed to radiation on a daily basis.  That’s all behind me now.  But you know what’s not?  The need for support.  I am in my darkest days NOW.  I am emotionally unstable- some days I wish I hadn’t survived.  I’m angry that I have and others haven’t, I’m feeling guilty because my disease has burdened my family, I don’t feel like *myself* anymore, knowing I have physical limitations.  Just as I knew before my diagnosis that I had cancer, I knew I’d make it through that battle.  I’m fighting a different battle now, but does anyone else recognize that?

When I first got my current job, I was so excited to be able to grow with the company/clinic/team.  I love my job, I love what we do there.  But now I’m finding out that there are so many other things that I’m more passionate about.  I’m finding that this position (while I still LOVE it) is not what I’m called to do.  I am in search of a way to help others feel less alone than I feel.  I really do feel isolated.  And it sucks.  I feel taken for granted.  And it sucks.  I feel like everyone sees me as *okay* now, but I’m not.   I want to be able to help others in ways that I have not been helped.

I mentioned the Young Survival Coalition in a couple of my other posts.  I want to be able to fundraise for them.  I mentioned that this was the organization I turned to with questions and frustrations when I knew no one else could give me that.  I was also able to experience an organization called The Cassie Hines Shoes Cancer Foundation this summer.  They provided my husband and I with a fun day at camp completely free of charge.  I was able to connect with other survivors and have fun without being a “cancer patient.”  Their mission right now is to be able to provide travel funds to young adults who want to experience weekly retreats and eventually build one of their own here in Michigan.  I know it sounds far-fetched, but I think I might love to work for them!  I attended a night out called the Stephen Tulloch Evening of Hope honoring breast cancer survivors this past Friday.  In listening to speeches and being able to be there myself, it became  even more clear to me just how much I needed to fill my own needs to help others.  We’ll see where that passion takes me…

When I was first diagnosed, I posted how I thought God was using me as a tool.  I got affirmation of that in talking to my aunt.  She told me that I saved her life.  I scoffed at the idea- really?  That was the reason I developed cancer?  I guess it turns out that I very well could have saved more than just one of my family members’ lives.  And I am glad that my disease and my battle were not in vain.  She will be having a preventative mastectomy in just over a week from now.  With her permission, here is a snippit of an email she sent to her family and friends.

"Because of her young age & the aggressiveness of her cancer, she was advised to be checked for the BRCA gene. She was positive.  She was persistent in her encouragement for the rest of our family to be tested but we didn’t see a history of breast cancer in our family & were quite certain that she must have inherited this gene from her mother’s side.  It was only on a rainy drive to my sister's chemotherapy appointment that we decided together to be tested. It started to all make sense. Our sister had breast cancer 3 years ago, our mother died of Pancreatic Cancer which is also tied to this gene & my oldest sister was diagnosed with Ovarian cancer in February.  We were both tested & she and I are both positive for BRCA1. After much prayer I have made the choice to have preventative surgery. I feel so blessed that God has equipped me with this knowledge before any sickness was able to invade my body. Many of my family members were not as fortunate."

In what we in the cancer community refer to as “Pinktober,” I step onto the soapbox and encourage you to please please please check yourself.  Breast cancer is not just an old woman’s disease.  It is not just a woman’s disease.  If something seems off, get it checked!!  We are aware of breast cancer- but it doesn’t always happen to someone else.  And in true awareness/fundraising form, if you want to help, please donate directly to a charity or organization.  If you want to sport the pink ribbon, please purchase from a source who actually donates money to the cause and doesn’t just make money off of you.  Besides, we need a cure, not more pink clothing.

No Evidence of Disease

Well, there you have it.  After a 10 month fight, I have been told there is no evidence of disease in my body.  I had my CT scan and bloodwork done on Tuesday June 25 and then had to wait almost a whole week to get my results.  I had myself so anxious, so worked up that there were days that I had to fight down bile.  I felt like I was waiting for my death sentence.  I was hoping for the best and fearing the worst.  When my oncologist walked into the exam room and tried to make small talk, I told him I was anxious and needed to know what the scan showed.  He said the scan looked good and so did the bloodwork.

I am incredibly happy, but still feeling pessimistic.  I have been told that this is normal and that it takes a really long time to adjust to the post treatment life.  It is not easy.  Not easy at all.  Even though I feel pretty good, I am by no means back to "normal."  In fact, I am getting used to the new normal of getting tired incredibly easily (of needing a nap when I didn't even DO anything!), of looking "good" but not feeling good, of smiling even though I don't really feel like it.  I might not be sick anymore, but I am still recovering.  I HAD CANCER.  I am still at risk for cancer.  This will be my life.  I don't get to go back.  I don't get to pretend it never happened.  While the people in my life might be able to do that, I have to deal with it every day.  I have to deal with the PTSD, I have to deal with the changes to my body, my scars, my fatigue.

I had my port removed on Wednesday, July 3rd.  I truly celebrated Independence Day.  Knowing that my doctors felt there was no need to keep it in anymore brought a HUGE sense of relief.  And having it removed, having one less foreign object in my body, makes me ten times more comfortable.  I still would not have changed anything regarding the port since it make the infusions of chemo so much easier, but I couldn't wait for it to go.  I felt it all the time.  I felt the tugging in my neck where it was attached to my jugular vein.  I felt the lump on my chest when I lifted something or as my children were tring to cuddle with me.  And now I am left with a scar.  A lower cut shirt will always expose what used to be a part of me.  But "There is something beautiful about all scars, whatever nature.  A scar means the hurt is over, the wound is closed and healed, done with."

I've been out riding my bike.  I haven't been out as much as I would like to, but sometimes life gets in the way.  I'm pretty sure I will no be able to do the fundraiser ride.  Hubby and I had talked about doing the one day ride, but that is still 60ish miles.  I don't know if I'm strong enough.  I don't know if I have enough endurance.  I'm still "recovering."  Maybe next year?

Plus, the ride is my birthday weekend and I'm in the planning stages of my 30th birthday party!  I know I mentioned this before, but you're all invited!  It will be a joint party with the son who is turning 3, and if all goes according to plan, it will be at our new house.  Mark your calendars for September 28, 2013.  :)  Life is sweet.

The End of Active Treatment

The end of active treatment…  I finished my radiation regimen this past Wednesday (5/22), so I am officially done with active treatment.  I am excited to be done with the grueling part of all of this, but I have not exactly breathed my sigh of relief yet.  That will come after my CT scan on June 25^th and I get the “all clear” from the oncologist.  I’m still not optimistic, but I’ve got to live my life while I’m alive, you know?

I know it’s been a while since I’ve posted any update, but it’s because I’ve been busy!  No news is good news, remember? 

I started radiation on Monday, April 1^st.  I wasn’t exactly thrilled with my doctor (not a bad doc, just not a comfortable fit for me), but I absolutely loved the techs who treated me every day.  They really took the time to get to know ME and they were really flexible with my time slot since we had to squeeze treatment into the hubby’s lunch hour in order NOT to arrange for a babysitter.  I cooked (pardon the pun) along for 5 weeks, everything going according to plan.  My skin got progressively worse as often happens with this type of treatment.  Once my skin broke open I couldn’t get comfortable at all.  I couldn’t put my arm down as the rawness was essentially in my armpit.  I couldn’t wear clothes because the slightest friction made me wince.  About a week after this (and a prescription for Vicodin and Silvadene), the doc looked at my skin and said NOPE, not treating until healed.  At first we hoped it would only take a couple of days, but as it got worse instead of better, the doctor mentioned not even finishing.  I was so disappointed since I only had 5 treatments left.  I was so ready to be done, and even though I had thought about quitting on multiple occasions, I really wasn’t ready to throw in the towel on my chances…  After almost a two week break, I was given the green light to continue and I finally finished.  I am now healing.  J

I need your support.  I have decided to participate in a fundraiser for an organization that has been my life line during all of this- the Young Survival Coalition.

 When I was first diagnosed and began sharing my news with people, I heard so many “My mom beat breast cancer” and “my aunt is a 5 year survivor” and “my grandma was diagnosed 15 years ago and is doing great…”  While I know those words were said as encouragement and support, it only made me feel more isolated.  I was TWENTY EIGHT years old.  These were older women, the “normal” age range for women diagnosed.  I was not one of them.  My life is totally different than theirs.  So I actively sought out women like me.  JUST LIKE ME.  Women who were young with aggressive forms of breast cancer.  I found YSC in my searching and joined their online community.  At that time, the site wasn’t incredibly active as a community, but the wealth of information I got from the site was so valuable.  My first act as a cancer patient was ordering YSC’s Treatment Navigator.

I found YSC on Facebook.  I needed to chat with real women any time of day.  I needed to ask questions that people actually had answers to- not the questions that my doc gave me general answers to.  I think my first post to them, in the miserable first weekend after my first chemo treatment was “How do you do it?”  Meaning how do you make it through all this crap in order to live your life?  The women of the YSC gave me the best answer, even though cliché, you do it one day at a time.  I now have a tattoo to remind me that “with the new day comes new strength.”  There are women there who are in my exact shoes, stage III, little children, trying to work and take care of their families as well as themselves.  There are women there who are worse off than me, stage IV, fighting to live their lives as best as possible.  There are women who are 10+ years survivors and others who are even more freshly diagnosed than me.  It is a wonderful community of support and they reached their goal with me.  I learned through them that I am NOT alone.

So I am planning to participate in their Tour de Pink at the end of September.  It’s a 3 day bike ride from Philadelphia PA to Washington DC.  I have not been on a bike in YEARS, so this is going to take a lot of training and effort for me.  Hubby has agreed to participate with me, so I am asking you to please, please,  please help us make it worth it.  I have never had the inclination to give back, but I feel so strongly about giving back to YSC.  PLEASE.  I have not registered yet, I want to see how many of you will support the YSC before I choose the 3 day ride or the 1 day ride.  I would love to do the 3 day, but that all depends on YOU.  Oh, and is anyone interested in riding with us??

http://www.youtube.com/watch?v=_PZ4KvKmGcM&feature=share&list=PLWo_SAuUiK_N2xEa6usavs10OA6okAwn0

Is the End In Sight?

Well here I am, 5 radiation treatments in to my new schedule.  I have 25 left for a total of 30.  It is already wearing on me- the having to go every single day.  It does help, though, that I like the radiation techs that I see every day.  I go in to the office, walk back to change into a gown, and then meet my tech outside the treatment area.  I am walked in and I get to lay in a mold of my own body so that I am in the exact same position every time.  They adjust all the angles, place a warm wet towel on my breast, and let the machine work its magic.  I was told that the wet towel helps bring the radiation to the skin in order to get the maximum effect.  It's been working, as I have turned pink faster than we thought...  The most common side effect from radiation is skin burns.  Some people only get a mild "sunburn," while others could get to the point of raw open wounds.  I am not to use anything prior to treatment, but Aquaphor is okay for after.  Hopefully I never get to the extremes.  Oh, and I'm not allowed to wear regular deodorant as it is aluminum based.  :-/

Once I am done with radiation, I will have another CT scan to make sure there is no more evidence of disease in my body.  This is scheduled for June 25th.  Six months after I am done with radiation (hopefully the end of November), I will have my exchange surgery for my permanent implants. They won't touch my radiated skin until it has had time to heal enough to be elastic instead of tough and contracted.  I absolutely cannot wait for that day- the tissue expanders are hard and uncomfortable.  I can feel them all the time.  I am pretty much fully expanded to desired size, though we may have to reevaluate once I lose my extra weight. 

I have not made it through this unscathed.  As much as I appear to be strong, I am only doing what I have to do.  There is no other option.  Cancer has invaded every aspect of my life.  Chemotherapy killed not only cancer but other normal fast reproducing cells as well, I lost my hair, I lost muscle mass, I lost digestive function.  Sure I made it through, but I will have long term side effects such as weak heart muscles/valves.  The surgery removed my womanhood.  I don't refer to them as breasts or boobs anymore, I refer to them as foobs- fake boobs.  They are NOT me.  They are hard, it hurts me when my children cuddle.  Plus I have scars- big ugly scars- and no nipples.  I feel ugly and deformed and I hate wearing form fitting clothes.  And the radiation causes its own damage.  My skin will be burned and because they are radiating my left breast, there is a high risk of heart damage from this too.

Even though the end is in sight, I won't ever live my days free of this beast called cancer.  My scars will remind me.  My figure will remind me.  I will live my life scared to death that not only will the cancer come back, but will I suffer a heart attack or other heart problems?  I also have to fear ovarian cancer because of the gene mutation I have.  I'm not ready to have my ovaries removed prophylactically, I'm only 29.  And then there is the PTSD I seem to already be suffering.  I get nauseated when I see a syringe or when I learn of someone newly diagnosed.  I haven't had my port flushed like I should because I can't deal with the idea of going into the chemo treatment room anymore.  I literally cry when I see children cancer patients.  This disease is so unfair.

I am doing the best I can to deal with this, but that doesn't make me strong.  It doesn't make me weak either.  I read an article/ blog post that really made me say "Amen," and I'd like you all to take a look at it.  I'm sure I'm not the only person you know who has or has had cancer.   Some Thoughts On How To Be a Friend To Someone With A Serious Illness  I may not be Stage 4 (yet), but a lot of it applies to my situation.

A couple of FYIs-  My YouCaring site is still active if you are interested in helping.  YouCaring- Courtney's Journey Unexpected

And a friend of mine who sells Thirty-One gifts is donating her own proceeds from the sale of products in a "Fundraiser for Courtney" party to help.  You you love Thirty-One (I do!), or are interested in shopping AND helping me, you can shop her site until April 28th.  On the website, click on "My Parties" and find the one for me.   www.mythirtyone.com/193122

No News is Good News

I don't have a whole lot to update on, but I felt like it was time to post again.  Keep in mind that in this case, no news is good news.  :)  I am still waiting to start my radiation.  I have what's called a simulation this Friday (3/22).  I will have xrays done of the area to be treated and will be marked with "tattoos" so that the exact same areas will be treated each time.  Hopefully we can start next week, but I really don't know the time frame from the simulation to the start of treatment.  I'll have to go in 5 days a week for 6 weeks.  I'm told that the most common side effects from radiation are skin burns and fatigue.  I guess I'm looking forward to those after the side effects from chemo.

I'm pretty much healed from the mastectomy and have been having fills in my tissue expanders.  I'm not going to pretend it doesn't hurt because it does!  The expanders are underneath my pectoral muscles, so after the saline is injected to stretch me out, it really does feel like I am being ripped apart.  Luckily, the pain only lasts for a couple of days, so I guess in the end I can say it was worth it.  My plastic surgeon actually told me that he was impressed with my "breasts."  They are progressing exactly as they should be and my skin is beautifully elastic.  (Good thing, since I'm only 29!)  My permanent implants will go in 6 months after I finish my radiation treatments though I wish it could be NOW since the expanders are truly uncomfortable.  They really feel like boulders sitting on my chest.

I am impressed by the turnout we had at the taco dinner my (BEST) friend organized for me.  And I am grateful for everyone who attended and those who donated...  I am humbled by the support.  I was able to completely pay off a couple of bills after the event!  I still have more and I will still incurr more.  I am keeping my youcaring site active for a while longer in case any of you are willing to share my journey with your friends or if you want to donate but have not been able to yet.  Again, thank you, thank you, thank you!

link to:  youcaring fundraiser site

Blessed

How blessed am I to have so many people pulling for me?!  I am amazed and humbled by the support being shown, both monetarily and emotionally.  I was able to completely pay off one of my very expensive chemo treatments thanks to donations from wonderful people.  I thank you for that.  I thank you for being there for me...

I apologize for the misunderstanding about the donation site in my last post.  The flyer is actually a picture, so you cannot simply click the link.  But if you are interested in donating any amount towards my medical bills and are not planning on attending the fundraiser dinner, you can use this link.  If you are planning on attending, I can't wait to see you (and be sure you rsvp)! 

I am feeling GREAT five weeks after surgery.  I am healing well and have all of my range of motion back.  I have no pain other than the day or two after my "fills" for my tissue expanders.  I have been back to work since 3 weeks out of surgery, albiet with some lifting restrictions.  It really does feel good to be getting back to "me."  I will have one more filling process on the 15th and will most likely start my radiation the next week.  I will have treatment for 6 weeks, 5 days a week.  I pray that radiation goes without a hitch just as everything else has.  (And I'll knock on wood, too!)

My hair is coming back, as I'm now NINE weeks out from my last chemo treatment!  My eyebrows are growing in and I have enough eyelashes to actually put mascara on.  :)  I know it sounds vain, but it really does feel good not to look like a cancer patient anymore even though I'm still fighting. 

So other than the hair and the fundraiser, there's a big fat nothing new!  Hooray!

Survivor?

I had an appointment with my oncologist on Thursday (2/14) and he referred to me as a "survivor."  I guess technically I am cancer free.  But I don't feel as though these phrases really apply to me.  I am still fighting.  I am still working on making sure the cancer doesn't show up again in the coming years.  I am currently in the "expansion" part of my reconstruction and hopefully will be starting my radiation treatments in 1-2 months.

And I guess I've lost my positivity.  I have been thinking and saying WHEN the cancer comes back, not IF.  And I guess it's because I'm scared.  Up until my surgery, I saw the tumor as something we were going to treat and get rid of and then I was going to move on with my life.  After the surgery, when I found out I did in fact have cancer in my lymph nodes, I now imagine the microscopic cells invading other parts of my body.  I know that the chemo should have taken care of those and that is the exact reason we started my treatment with chemo.  But I think of the aggressiveness of the cancer I did have (how quickly my tumor grew in the first place!), and I feel that it somehow escaped the poisoning.  I have nightmares about- I had one where once I was deceased, they examined my liver and it was covered with breast cancer cells, and another one where I won the lottery but my husband had to pay for all my medical bills and my funeral with the money.

On a different note, I am feeling incredibly blessed and humbled by the outpouring of support.  I am truly dumbfounded by how many people have reached out to me to tell me that I am in their thoughts and prayers.  And I am also incredibly grateful for those of you who have been so generous in donating to help with the bills.  I'm not sure how to go about ackowledging each of you individually, but please, please, please don't think I take any of your kindnesses for granted.

Recovering

Well, now that I've had time to "digest," it's time for the update.

Surgery went without a hitch.  According to my family, the surgeons were pleased with how it went.  I'm very surprised how anxious I was NOT going into it.  Prep was pretty quick, at least the prep while I was awake.  I changed into my gown with the opening in the back and put on some socks and was told I didn't have to wear the hat since I'm bald.  I signed some paperwork, answered some questions and had radioactive dye injected into the tumor area.  My nurse gave me the "happy juice," my plastic surgeon drew lines all over me, and I kissed my family goodnight.  I was asleep before they even moved me out of the temporary room.  I very vaguely remember the OR.

I also very vaguely remember recovery, but the nurse sitting with me did bring me apple juice.  That was nice.  The transport from recovery to my room is also fuzzy, though I remember seeing the hubby and smiling at him.  I was conscious enough once they moved me to be regular bed to ask for ice water and my phone so that I could update Facebook.  :)  The hubs ordered my clear liquid dinner and once it arrived, my nurse gave us the go ahead for "real food."  I guess I was overzealous since I hadn't eaten all day and after the first couple of bites of food, I felt nauseated.  Luckily as long as I ate slowly I was okay.  My dad, mom, step-dad, and husband stuck around for a little while, but to no one's surprise, I was ready to sleep for the night.

I called for my nurse around 9:00 pm to help me to the bathroom.  I hadn't gone in 13 hours and I was feeling like I was ready to get up and around anyway.  However, that didn't go so well.  I made it to the bathroom (excruciating pain trying to get out of bed!), but almost as soon as I sat I started feeling lightheaded.  I told the nurse I was dizzy.  He called for the CNA to come help him.  He asked how dizzy.  I told him the room was black.  I heard him yell "She's going down!"  I remember being irritated with him that he was making me keep my head up.  All I wanted was to lay down.  It took both of them (both men) to get me off the toilet and onto a rolling recliner.  Once I was able to lay, my head cleared.  And believe it or not, I did pee during that ordeal.

Even though I was reassured that it's pretty normal for the first time up post surgery, they still sent in someone from the lab to take blood and sent someone in with an EKG machine.  They also told me that I MUST wear my oxygen mask.  Hooked up to the oxygen, the IV, the massaging calf boots, and having three tubes hanging from where my breasts used to be really made me feel like a patient or something.  I must admit, I really didn't like that feeling.

The morning after surgery, my surgeon did the rounds and pulled my bandage up to check on it.  I wasn't sure I wanted to look, but I was actually pleasantly surprised.  Granted my chest wasn't the size it was when I woke up the previous morning, I still had bumps that produced cleavage due to the 100 cc's of fluid in the tissue expanders.  I had a skin sparing mastectomy in order to aid the reconstruction, so the plastic surgeon was able to make a "purse string" stitches right about where my nipples used to be.  This technique allows the most natural shape.  It's not quite as ugly as it could have been and I'm actually looking forward to the end result.

The next step is filling the expanders a little at a time to stretch the pectoral muscles that have been manipulated on top of them and prepare me for the permanent implants.  Once I reach the desired size (about 2 months from now), I will start radiation.  Radiation damages skin and we want to be sure that my skin is still elastic during this expansion process.  I was really hoping to not have to do radiation, but went I went for my consult with the doctor, he told me what I knew but didn't want to hear.  Stage 3 = radiation.  It would not have mattered what was in my lymph nodes, the tumor was just too big to take any chances.

But there was cancer in the lymph nodes.  Seeing as how they removed all the breast tissue, they are sure the whole tumor is gone, but even after 8 rounds of chemotherapy there is still cancer in the nodes.  This news makes me glad that I had already resigned myself to the fact that I'll be having radiation...  That will zap out the remaining cancer in that local area.  But I am scared that in a couple of years I won't be cancer free any more.  If the beast already moved out of the breast tissue and into the lymph, there is no guarantee that it has not found another part of my body.  I have an appointment with my medical oncologist (chemo doctor) on February 14th, so we'll get his take on it then.

Until then, I focus on healing, but I'm not good at being a patient.  It really frustrates me when I can't do things for myself.  It especially frustrates me when I can't do things for my children- like bend to kiss a boo boo or reach up to brush hair.  My muscles are tight (remember the pectoral manipulation/stretching?) and I'm pretty swollen despite having three drains to take care of the fluid.  The pain isn't so bad anymore, I can deal with just plain Tylenol, but getting up from a laying position is really rough.  I'm only supposed to do what I can, the doctor says I'll have exercises and stretches later on.

I want to take a second to thank EVERYONE who has helped us on this journey.  We haven't had to worry about food at all this past week, nor will we have to worry next week.  It definitely takes a load off my mind as I'm still barely up to showering.  And thank you to those who have sent cards and get well sentiments.  I truly appreciate that fact that I'm am in so many hearts...

A benefit dinner for our medical debt is in the planning stages, so if you are interested, mark your calendars for March 10, 2013. More details will follow.

We Have a Date

Wow.  Things just got incredibly real. 

I just went from being really frustrated that the two surgeons' offices couldn't coordinate and figure out a date for my surgery to overwhelmed because of the phone call that told me that this surgery will take place SIX days from now.  My mastectomy and first part of reconstruction will be Wednesday, January 23. 

I'm actually very glad that they gave me very little time to "absorb."  As soon as I heard that date, I immediately started sweating.  I knew this was coming.  I've had more than 4 months to decide, understand, plan...  But it's here.  NOW.  I'm so anxious about losing a part of myself (as much as they disgust me) and about having surgery.  I know I'll get through this.  I'm hoping I can bounce back as easily as I managed to through chemo.  But it's so major!  My life has been altered from the day of the diagnosis, and here's another step.

I have updated the meal train dates, so if you are interested in helping with a meal, you can sign up now.  If anyone is interested in helping any other way, please contact me so that I can coordinate:  Meal Train

Oh man...

Waiting for a Date

I am now awaiting my surgery to remove my breast tissue and start the process of reconstruction.  I saw the surgeon who will be doing my mastectomy on Tuesday (1/8) and saw the plastic surgeon who will be doing my reconstruction this morning (1/11).  Now I have to wait for their "people" to coordinate with the hospital's "people" to get my date.  It could be as early as 1/23 or as late as 2/13.  I expressed to both offices that the earlier, the better.  I was told I should receive a call by Tuesday (1/15).

In case you missed it in other posts, due to my BRCA1+ gene mutation, I have opted for a bilateral mastectomy.  I don't want the worry of recurrence to be on my mind for the rest of my life because of this mutation that makes my risk ridiculously high. Any of my own breast tissue is game for cancer.  That is scary.  Obviously for vanity reasons (remember that I'm only 29!), I want to have breasts.  There are a couple of options for getting "new ones," but I have opted for the simplest and most common- silicone implants.  After the general surgeon performs a skin sparing technique for removal, the PS will insert what's known as an expander in order to stretch my muscle and remaining skin to accomodate the implant.  Once I am healed, this expander will be filled with saline a little at a time (PS said every two weeks) in order to reach desired space (or size :) ).  Then another surgery will take place to make an exchange- the expander for the implant.  If it is determined that I need radiation as part of my treatment, the PS will decide whether we shouls radiate first or expand first.  Radiation causes damage to skin and is detrimental to implants, so exchange surgery will not occur until I finish radiation.

I have had offers of meals brought while I am out of commission.  I have created a "meal train" in order to better organize.  If you have made this offer to me, or this offer is in your heart, you can sign up here:  meal train .  Right now the dates are not exactly accurate as I just don't know.  I will update once I DO know.  Also, if you are interested in helping in any other way, let me know.  The husband is trying to take as little time off work as possible, since every day he takes off is money lost for us.  :(