A Break

Courtney was composing this last post around Oct. 8 2014 when she was at the hospital with Tyler for his choking incident.  She did not get to finish it, because this is when she started getting the headaches. When I have the time to do it properly, I will add final post to her blog detailing her final weeks.
Thanks, Mark



I apologize for not updating more often.  I have had a couple of people ask if there was anything new and there kind of is.  My life is kind of crazy and it's hard for me to find down time that I don't need to use for sleeping.

As I type this, I am on a chemo break.  I started my weekly infusions two weeks after my son's birth, but was only able to squeeze in four treatments before my blood counts (both hemoglobin and platelets) tanked again.  At first, the plan was just one week off and then resume treatment.  When my counts still hadn't come up, I was given a shot called Procrit that is designed specifically for boosting red blood cells in patients receiving chemotherapy.  After the shot, I was given another two weeks off to let the numbers come back up.  After that two week break, I had my blood drawn again and the platelet count had gone up, but the hemoglobin had dropped even lower!  I was scheduled for a blood transfusion the next day.

I had been feeling off.  I had been feeling tired.  I was chalking it up to the chemo accumulation and get getting up 2-3 times a night with a new baby.  I didn't realize that it could be that my hemoglobin was dangerously low at 6.3.  Medical professionals were surprised that I was carry about my normal daily activities.  Now the concern is WHY it is having trouble coming back up.  My doctor has two theories.  Either this specific chemo is too hard on my bone marrow, which is where the blood is made, or there are metastases in the bone marrow standing in the way of blood production.  He's not too convinced on the latter since my white blood cells remained stable and my platelets came up.  It was just the hemoglobin I seem to be having a problem with.  After the transfusion, my level came back up to 10.4.

I have another PET scan scheduled for this coming Wednesday (10/15).  I have been having persistent lower back pain that at first I thought might just be because I've been walking unassisted all the time now.  However, it's not better in the morning after sleeping all night or worse at night after walking all day.  It's pretty much a constant ache.  So doc wants to rule out more metastases.   He also thinks now is a good time to evaluate how my body is responding to this chemo in regard to getting rid of the cancer.  If it has been effective, he may keep me on it and just change my schedule.  If it has not been effective, changing to a different drug will be justified.

I have become a part of a couple of cancer communities since original diagnosis and a couple more since the stage four diagnosis.  I need a place where I can bounce ideas, ask for opinions, and hear the been there done that stories.  Unfortunately, being friends with so many who have cancer means that I see death, too.  More so than in "real life." (Even though I have suffered losses in real life, too.)  I grieve for friends and families left behind.  I grieve for children who are left without mothers.  Cancer STOLE these lives!  Each time, it's tough, but when I see someone who has worn the same kind of shoes as me...

I start to ponder my own death.  How long do I really have?  This disease IS going to kill me (unless I die in a car crash or other fluke accident).  6 months?  A year?  5 years?  Will this new baby know me?  Will my older children remember me?  Will I see my oldest graduate high school?  What about my youngest?  It scares me but more than that, makes me sad.  My family didn't sign up for this.

The Birth Day and the PET Scan

Baby is here!  I am in awe of how well he is doing.  I'll admit that the whole process leading up to delivery was pretty scary. 

I was admitted on Monday morning (7/28) for the second steroid shot.  After getting my lab results back, it was determined that my hemoglobin and my platelets were really low.   I would be receiving a transfusion of blood and of platelets I order to make sure things were safe for surgery the following day.  The platelets arrived pretty quickly and I was transfused with those by Monday afternoon.  The blood, on the other hand, didn't arrive until 10:00 at night.  Because I have certain antibodies, the blood has to go through an extra screening to make sure it doesn't have those antigens.  (Remember the whole problem with my baby's blood?)  Transfusing that late posed a small problem.  I was supposed to have 6 hours of a magnesium sulfate drip prior to surgery.  My surgery was scheduled for 8:00am.  They turned the pump on for as quickly as I could tolerate and I was done with my two units of blood by 1:00am.  They started my magnesium and I dozed for a couple of hours. 

Around 4:00 in the morning, they drew my blood again to make sure things were safe for surgery.  Around 6:00 in the morning, I was informed that my platelets were still only 37 (should be 50 for surgery and 100 in order to perform the "awake" cesarean section).  My OB made the call to go ahead with delivery, but we had to get more blood and platelets to make sure I was safe in case things went bad.  Again, we had to wait and wait for blood because it needed the extra screen.  8:00 came and went.  12:00 came and went.  Finally around 1:00, we were informed that the blood had made it to the hospital and we were looking at a 3:00 surgery.  At 2:30, we were informed that someone else wanted to use the operating room and my doc said NOPE.

My beautiful son was born at 2:53pm weighing 3lb9oz.  Of course as soon as we got to the OR, I was put under anesthesia, so I didn't get to meet him until a couple of hours later.  My surgery was finished without any complications.  Even though there was risk and concern of hemorrhage, I was told that I barely bled more than normal.  When they brought my son out to see my husband, he wailed upon being unwrapped.  Things could not have gone better.

On Wednesday, the resident OB let me know that my OB and my oncologist were suggesting another transfusion for me.  My body had just been through shock, essentially, and thy wanted to make sure I could actually be discharged in a decent condition.  They still had the blood from the previous day (I didn't NEED it!), so I agreed.  I felt terrible.  I had been feeling terrible- chemo + pregnancy + surgery will do that.  By the time I was done being transfused, I was also done being bedridden.  I asked my nurses to take out my catheter and unhook me from my pump for pain meds (which also meant taking off the pulse oximeter on my finger and the respiration monitor at my neck).  I finally felt better.  But then I felt so much worse.  Wednesday night was a really rough night.  I had only been up out of bed once on Wed.  Trying again during the night took not one but two nurses.  I was in so much pain not only because of my incision but my legs and hips too.  I had no idea how to manage it all together.

Thursday morning, the resident OB asked when I wanted to go home.  I almost cried.  I told her "not today."  If the overnight had been more successful, I might have thought about going home that day, but I just didn't feel comfortable with that.  However, throughout the day I got more and more confident.  I dressed myself.  I slept a lot.  I visited with my son.  I was able to use the bathroom on my own.  When Friday came, I felt ready to go home.  The OB wrote up my discharge papers and my oncologist checked in on me.  He told me that my platelets were still incredibly low even though my hemoglobin had come back up.  I was instructed to page the oncologist on call if I had ANY problems after being discharged.  Luckily, I have not.

Before I left the hospital, I was contacted to schedule my PET scan.  The PET scan is the *big* test we were waiting for.  It tells my oncologist where else the cancer is.  We know it's in the femurs and pelvis because of x-ray and biopsy.  It gives the radiation oncologist a framework on where we need to radiate.  It gives the orthopedic oncologist images that will help determine type of surgery (pins? whole hip replacement? none at all?).  I went through this test this past Wednesday (8/6).  I was injected with a radioactive dye that shows uptake in rapidly reproducing cells (cancer)...

And that leads us to today.  How lucky am I that I got to consult with 3 different doctors all within and hour of each other?  But we have results and we have a plan.  I wish I had good news to share with everyone, but cancer is an ugly beast and I didn't exactly get lucky.  I guess if there IS good news, it is that there was no cancer detected in any of my vital organs.  My liver, lungs, spleen, etc., look good.  My bones on the other hand, don't fare as well.  We knew it was in the femurs and pelvis.  There is a LOT of it in the pelvis.  There is also a tumor on my C2 vertebrae that the doctors are very concerned about.  I had no clue.  Now all of a sudden, I am hit with the realization that paralysis could happen at any time.  This tumor is not only close to my spinal cord, but close to my brain as well.

So what is the plan of action?  I start radiation on Monday (8/11).  We'll be radiating the tumor in my neck in hopes of getting rid of it.  We'll also be radiating my hip/femoral head in order to both shrink the cancer and to bring me pain relief.  I also start back on chemo next week in order to shrink/get rid of everything else.  I'll continue the same weekly regimen that I was doing before delivery.  I'm hoping I can handle it better NOT being pregnant.  According to the doctors, the radiation and the chemo complement each other- they help each other to be more effective.  These next couple of weeks will be tough on my body, but they'll be tough on the cancer, too.  I will also receive a shot of a drug called Xgeva, which helps with bone building.

My older two children will be attending a camp next week specifically for kids who have parents that battled cancer.  (Camp Kesem). I am really looking forward to what they can experience there.  That also leaves me alone time with the (now) second youngest.  I'm looking forward to that too.  And while I wish the youngest could be at home with us already, I know he's in good hands and will continue to get stronger and gain weight and be home soon.  Thank you all for your continued prayers and well wishes.  And a BIG thank you to those who have volunteered time for me as well as the food and gift cards.  We appreciate it more than you know.

It's All A Blur

Whew, I guess when it was time to act, it was time to act!  This past month really has been a whirlwind, a haze, a blur. 

I did in fact start my chemo regimen on July 2 in order to get this ball rolling.  The oncologist put me on a low dose because of the baby.  Three of my weekly treatments is a normal "round" administered at once.  So a normal infusion would be one treatment and then a three week break.  Doing it this way was supposed to be easier on my body/baby, but it caught up with me pretty quick.  When my labs were run after my first treatment, all of my blood count levels came back low.  In fact, when I went in for my second infusion, the nurse scared me to death, saying that we might not be doing chemo that day.  I cried.  My treatment is time sensitive.  I didn't have a week to push back treatment.  We needed to squeeze in my "round" so that we could deliver baby boy.  After my tears, my explanation, and a talk with the doctor, the nurse apologized for being misinformed but also told me that in order to receive chemo the following week, I would need to have a blood transfusion.  My blood counts were only going to get lower.  I went in on a Tuesday for the transfusion and received my third chemo infusion the following day.

That was my third infusion, the end of the first "round."  When I went in the following week (this past Tues) for my check-up, we again found that my blood counts were extremely low.  My oncologist made the decision to cancel my chemo for this week, but also made the call to my obstetrician to get me set up for delivery.  Instead of standing still, we're going to get things done.  I know I state things "matter of factly," but I do experience emotion too.  I am SO incredibly exhausted- not only physically, but mentally and emotionally as well.  Going through cancer treatment sucks.  Going through pregnancy can suck.  Put them both together??  Luckily, only a very small percentage of people will have to experience it.  I posted a definition for nadir on Facebook a couple of days ago.  It's a noun, it means the lowest point.  That day was more than likely my lowest point in my blood counts.  It was also a very low point mentally for me.  Waking up and doing this day after day takes a lot of strength and a person can only push so much before needing a rest.

So today I am resting.  I am preparing myself for the birth of my son and the chaos that will follow.  I have to report to the hospital tomorrow morning (7/27) to get the first of two shots that will prepare his lungs for birth.  I will then come home to get things in order to be admitted on Monday morning (7/28).  On Monday morning, I will get the second of the two shots and have an IV started so that they can give me an infusion (I don't remember of what) that will help prevent any brain bleeds in my premature baby boy.  They will also check my blood counts to make sure I am ready for surgery and will perform another blood transfusion if necessary.  If all goes according to plan, I will meet my son on Tuesday, July 29th.

After delivery, I will be able to have the rest of what I need done.  The first step will be imaging.  I will hopefully have a PET scan during this week.  The oncologist needs it to see if the cancer is anywhere else in my body and the radiation oncologist needs it to plan the radiation.  Chemo and radiation can be done concurrently and we all have our fingers crossed that it will relieve the pain in my hips and legs.  We're looking for this to start the next week.  I will also need a CT scan of my femurs and pelvis so that the orthopedic oncologist can set up a surgery.  I have been on bedrest since we saw the last x-rays.  The ortho thinks I need pins in my femoral head, that's how thin it looked.  This surgery may or may not be pushed out a little while, it all depends on the imaging and how my body responds to chemo, radiation, and the bone building drug I will receive once I am no longer pregnant.

I have had generous offers to help set up a meal train during this chaotic time.  I never know where I'll be, what I'll be doing, or how I'll feel, so I very much appreciate these efforts.  There will be appointments and tests and visits to the NICU, along with the fighting and healing...   If you are interested in dropping anything off for my family, I will try to get you the details asap.  If you are interested in helping out in any other way, just let me know.  A lot of people ask me what I "need," but I have no idea.  What I need is to get rid of this beast and I would more than appreciate ANY way you would want to help.

Stage IV

I'm pretty sure I knew from the beginning.  When I started having pains in my hips and legs that were nothing I ever experienced before, I knew the cancer had spread.  Trying to remain optimistic was tough, so others did it for me.  I appreciate everyone who tried to find alternative explanations or who believed it had to be a fluke.  But it is what it is, and it is metastatic breast cancer.

The biopsy procedure went well.  I was incredibly uncomfortable most of the day due to not thinking about bringing my pain medication to the hospital with me.  It took longer than we expected to get me set up, but I was only under for 30-45 minutes.  The doc who did the procedure, an interventional radiologist, punctured a spot down by my knee and drilled my bone. Because he had the help of CT equipment, he chose the furthest spot away from baby.  When I woke, I was surprised and impressed with just how little my "wound" was.  It was actually smaller than a couple of scars from biopsies they did of my breast.

After the biopsy was over, they monitored me for a while.  Due to the previous day's activity, I had been having contractions before I even showed at the hospital.  Due to being in pain and being dehydrated, they continued on after.  Knowing the signs and symptoms, my anesthesiologist ordered a fluid bolus.  By the time I got to labor and delivery and got hooked up, there was nothing to be concerned about.  We stuck around for a couple of hours anyway and I was released in no more pain than I went in with.

I waited over a week and then got tossed into a whirlwind.  I met with my oncologist yesterday for my results.  He told me what I already knew, but he also laid out the next steps.  He gave me the plan of action which involves starting chemotherapy all over again- TOMORROW.  There will be no more sitting around growing a healthy baby, waiting until it's time to do something.  The time is now.  I will be infused once a week with a drug called carboplatin. As long as no other complications arise, we will continue this regimen until about 34 weeks when we will deliver my son in order to get even more aggressive.

Other complications are very likely to arise.  I also saw the radiation oncologist yesterday as we were hoping to start radiation as soon as possible as well.  They were going to focus on the spots that are in my distal femur (by my knee), but after he reviewed my latest x-rays, he realized the worst spot was way too close to baby to radiate.  My femoral head, right where my femur meets my hip, appears very thinned.  So much that he is concerned about it breaking, leaving me in need of a hip replacement.  This is the area that is causing me that most amount of pain, so it makes sense, but is still pretty scary.  I absolutely have to have this area radiated as soon as possible, and so the question was raised- how soon is to soon to deliver baby?

After talking with my OB and my perinatologist today, I am still too soon.  So as of now, we go with the chemo plan and pray it slows the cancer growth really well.  I also have movement restrictions so as not to put too much pressure on that area.  Obviously, since I have a growing baby snuggled right in there, it will be harder than hard.  I was bumped up to a small dose of morphine in order to help control the pain, as the previous med I was on just wasn't providing enough relief.  I pray that once treatment starts, the pain will lessen as the growth stops.

My friends have reinitiated the Strength for Courtney campaign.  If you were interested in purchasing a t-shirt but missed out, you have another chance.  https://www.booster.com/strengthforcourtney2

Wish me luck and strength as I face the next steps tomorrow...

Next Steps

I'll be honest, taking steps is HARD.  Physically and mentally.  Things got really rough really quick.  Over the past couple of weeks, my pain level has become so unmanageable that I was taken off work and bought myself a walker.  I was not expecting that since the last x-rays showed no distinguishable progression of the lesions in my bones.  I have not been able to sleep despite eating my pain meds like candy.

I guess I'll start off with all the follow-ups from the last blog post.  The unbearable pain in my ribs that no one could give me an answer for turned out to be a popped rib due to baby boy's rear end.  Being out of place was stressing muscles and poking into organs.  Once the chiropractor was able to pop it back in, it felt better and was mostly healed about a week and a half later.  However, I am now dealing with bruised ribs on the opposite side because of baby boy's feet.  He sure is giving me a run for my money!

And while we're on the subject of baby, it turns out that he DOES have the antigen that my body is trying to fight.  Right now we're doing dopplers on his mid cerebral artery in his brain every two weeks to make sure that his blood flow still looks good.  If things start to go downhill, it will become more often and intervention may be needed.  Currently his numbers look fine, and even though his growth percentile has dropped in the past 4 weeks (from 70th to 35th), it's still normal and not time to panic.

So for the next two weeks, I focus on resting.  I'm going to try to fatten this child up while taking pressure off my legs and pelvis.  I have my bone biopsy surgery scheduled for June 20.  When I hobbled into the oncologists office last week and expressed my concern over all my symptoms and the fact that my pain increased so quickly, he sent me for another set of x-rays immediately.  After the previous set had come back "okay," the plan was to get me in for a MRI of pretty much my whole body as that would give us some insight to the symptoms I've been having, like dizziness, weight loss, etc.  An MRI without contrast is considered the safest scan for baby.  But I found out upon trying to schedule the MRI that it was in fact NOT safe, as I still have tissue expanders in and those have metal I them.  NO metal is safe with magnetic resonance imaging.  Then the plan became- call the plastic surgeon and either do the surgery for the swap or just remove them so I can have the MRI done.  We never got to that point...

When the oncologist got the results of the last x-ray, he decided we'd just skip the MRI for now.  We need to start treatment on the bones.  He ordered the biopsy so that we have an answer SOON as to what these lesions are.  Yes, they are growing, and yes they are consistent with metastases.  They cannot just be ignored.  Once the pathology comes back from the biopsy, we will know how to proceed.  Biopsy will tell us if in fact it is malignant and what type of chemo to use.  The reason we're skipping the MRI is because chemo will be systemic- even though we're specifically looking at my femurs and pelvis, it should help any other areas with metastases as well.  Because I'll be 27 weeks at the time of biopsy, it is considered "safe" to proceed with chemo in the third trimester.  All other scans and treatments can wait until after baby boy makes his arrival.

So that's where I'm at.  I know what the next steps will be, I just have to take it one day at a time.  If you're interested, a couple of friends of mine (some I've never even met in person!) have put together a fundraiser/support campaign for me.  Would you rock a "Team Courtney" shirt?  You can find details here:  https://www.booster.com/strengthforcourtney?share=2541401403636172  Just as an FYI, the deadline for ordering is the 14th of June.

Thank you all for the continued support and prayers.  I cannot wait to put this all behind me.

Worst Case Scenario

Well, it doesn't look like the worst case scenario is what I thought it was when I got pregnant or even 2 months ago when I shared the pregnancy news with everyone.  The plan was to watch tumor markers and rescan after baby arrived and get aggressive then if something should have arisen.

Something has arisen.  A couple of things actually.  I guess I'll start with the pain:  After the intense morning sickness subsided and I managed to get my hemoglobin levels up, I started noticing achiness and feeling "off."  Being that this is my fourth baby, I simply chalked it up to being pregnant.  I mentioned it to both my OB and my oncologist and they weren't too concerned either.  Until my tumor markers went up and the ache became PAIN.  My hips hurt.  My thigh bones hurt.  Regular Tylenol wasn't touching it.  I was waddling and limping already.  Around 16-17 weeks, I asked to do something about it.  I was sent ASAP for an x-ray of my pelvis, lower back, and femurs as that was where the pain radiated from.  (Sounds like pregnancy pain, right?)  Doc called me later that same day to report that radiologist found "sclerotic lesions consistent with bone metastases."  Even as I know the pain I was feeling wasn't normal, I was not expecting THAT.  Because I was still so early in pregnancy, the oncologist was hesitant to order any more tests or procedures.  The focus needed to be on growing a healthy baby, so I was prescribed narcotics for pain relief. 

Because I was favoring certain parts of my body, I managed to throw out my spine in my lower back.  This pain was totally different than the other pain- pinching versus throbbing.  In most positions I felt it and there was nothing I could do about it.  The two different issues combined made it almost impossible for me to function.  I couldn't stand.  I couldn't sit.  I couldn't lay down.  It took all I had to get through work (I now only work 12 hours a week) and when I came home I was useless.  I HATE feeling like that.  That's not who I am.  Because I knew the two issues were not the same, I decided to see a chiropractor for the first time in my life.  I was really hoping for immediate relief, but it didn't come.  Sure I felt better, but I didn't feel whole.  I continued with my appointments, if only for the massage I got while there.  :)  It turns out that after 6 adjustments, I no longer have that pinching pain.  (The leg and hip pain is still there.)

And because I decided to go to the chiropractor, I am now "half-chested."  The tissue expander that had been radiated popped.  I woke up last weekend to one side of my chest being almost completely deflated.  To be honest, I never really even thought of that problem.  I know plenty of women who have implants who see chiropractors for adjustments.  I assumed the fact that they were thick tissue expanders made them even more resilient than regular saline or silicone implants.  I guess not.  I guess it was bound to happen- to me.  However, I will say that I would rather be half-chested than to continue to be in the excruciating pain that I was.  At least I can carry about daily tasks.  I saw the plastic surgeon right away and he said that there is essentially no risk to leaving things as is.  He would be willing to coordinate surgery schedules to exchange the expanders for my permanent implants IF I have to have surgery before baby's arrival.  However, the same concept applies as before- he will not do an elective surgery on a pregnant woman.  If we have to wait, we have to wait.  If we have to start the expansion process all over again, then it is what it is.

I also got the news last week that the focus on growing a healthy baby before we start the fight against the cancer again might be in vain.  Some of you know, some of you don't, that I have certain antibodies that make me high risk during pregnancy.  Both of my boys had to be monitored closely while in utero to make sure that my body did not attack them.  I have monthly titre level checks to make sure that the antibody levels stay low and are not on the offensive.  Guess who's antibodies are now on the offensive?  Yeah, this girl's.  My levels jumped from week 15 to week 20 to double the amount that doctors start to worry.  They never got that high with the previous two pregnancies, especially at only 20 weeks.  Because of the whole cancer thing and because no major complications occurred with the last two pregnancies, this wasn't exactly at the forefront of my mind.  Silly me for thinking things would be smooth sailing.

I had an amniocentesis on Friday, May 9th to see if baby has the antigen that my body seems to be trying to fight.  This baby will also be closely monitored by ultrasound to make sure he doesn't become anemic and stop growing and thriving.  As of Friday, 21 weeks, his estimated weight was already 1 pound, which is good.  My perinatologist is already talking about intrauterine blood transfusions for baby, and that scares the crap out of me.  My amnio was traumatic (worse than any "awake" cancer treatment I have had!) and a transfusion would be done the same way.  However, of course I would take any action that will keep baby safe and healthy- including delaying any cancer treatment that might be needed or enduring in utero transfusions.

I found myself in the hospital on Tuesday night.  I had been having soreness in my upper abdomen for a couple of days when I just couldn't catch my breath anymore.  The severe pain is right under/below my lowest left rib.  I can't sit up, I can't bend over, I can't reach, I can't lift.  I can't take deep breaths.  Something is definitely up.  When I got to the hospital, they took my word for it that it really had nothing to do with baby.  (This is my fourth one, I'm pretty aware.)  They did a physical exam which was excruciating.  The OB that was there that night order a whole bunch of labs to check all my organ functions.  And guess what came back normal?  I have not been running a fever.  The symptoms are *only* severe pain and swelling.  He had no answers for me.  We left the hospital with a prescription for some stronger narcotics and the assumption that it's either a pulled muscle in my rib cage or a popped/cracked rib.

Because we got no answers from the hospital, my oncologist sent me for ultrasounds and xrays today.  These will be the comparison ones to see any progression of the sclerotic lesions (I'm already referring to them as metastases though have yet to be diagnosed as such) as well as looking at my vital organs for any abnormalities and looking at the rib area for clues on what the pain is.  I don't go back to see him until next Wednesday, the 21st.  I figure if there is something emergent, he'll call me, but if not, I just continue to take one day at a time.

So what's the plan from here on out?  Well, one day at a time.  The longer I can keep myself and baby boy healthy, the better.  I'm trying to take it easy, but that's a lot easier said than done- I'm still working and I've got three kids I have to be responsible for.  The results of the x-rays will determine the need for either immediate or delayed attention to the cancer.  If things have progressed quickly in the past 5 weeks, we will have to do a bone biopsy surgery under general anesthesia (perhaps coordinating surgery with an implant swap?).  That will determine TYPE of treatment.  I am able to do chemo in my third trimester if it comes down to it.  The amnio results will determine level of care for baby.  If the results are positive for the antigen, ultrasounds will probably be weekly.  If antibodies continue to increase and baby develops anemia, we do the intrauterine transfusion.  If that doesn't work, we deliver early.

I just want to feel good again.  I can't help but wonder "what next?" all the time.  Are little aches and pains just that or do they mean something else?  But it is what it is.  With the new day comes new strength.  It's tough and incredibly frustrating, but there is no other choice.  I appreciate any and all prayers for my family, my baby boy, and myself.

Postponing Procedures

Three months ago, I was expecting this post to contain all sorts of different news.  I was expecting to be sharing the success of my implant exchange surgery and hysterectomy.  I was expecting to have undergone another PET scan and share the news that the spots still present the same.  Instead, I want to share with all my followers that these procedures are being postponed.

It turns out that they don't do elective procedures on pregnant women.  I'll have to wait at least another 8 months to resume.  I'll let you take a minute to digest that.  I know it took me a LOT longer than a minute to digest that news.

To be completely honest, my first thought when that line on the pee stick turned pink was, "Holy crap, we screwed up."  So many emotions flooded me.  Shock, anger, sadness.  I kept waiting for the happiness to kick in.  I was shocked because of course I was taken by surprise.  I had discussed my hysterectomy (due to the BRCA1 gene mutation) with my doctor not even a month before.  My chemo treatments had thrown me into what is referred to as "chemopause," and when my cycles returned, they weren't exactly textbook.  Never in a million years did I think I would have more children.  I had accepted that and made peace with that.  I was angry because things were just starting to look up.  I was making plans to go for my Master's degree.  We had left behind the baby phase.  We were going to leave behind the cancer phase.  I felt as though pregnancy was a set back.  I was sad too.  I still live in fear of cancer.  I still talk about "when" it comes back and not "if."  I'm sad because now instead of leaving my husband with three children if I die, I now leave four.  How is that fair?  To him?  To them?

But, as I have said all along, it is what it is.  Perhaps it's time for plan xyz.  It happens.  It has definitely happened more than once (100 times?) to me, but I just accept it and move on.  I talked to my oncologist early on and he congratulated me.  He is not concerned with the actual pregnancy as I was already considered with "no evidence of disease."  My cancer was not fueled by hormones, so it is assumed that the pregnancy hormones will not fuel cancer regrowth.  It truly does make me nervous that I won't have the follow up PET to look at the "spots" again, but the doctor said we'll just do it once baby arrives.  The worst case scenario is to get aggressive after delivery.

My hysterectomy will take place 6 weeks after delivery (so long as there is still no evidence of disease).  I think the first question I asked my OB at my initial visit was "Can we do a C-section and a hysterectomy at the same time?"  This can't happen again. I cannot put myself and my family at risk by waiting any longer.  Unfortunately, even though tubes can be tied during a section, removing vital parts is too risky immediately after delivery.  Everything is stretched and very vascular, so bleeding risk is astronomical.  In other words- definitely not a good idea.  So now we're hoping for another uncomplicated vaginal delivery, normal healing, and then a laparoscopic hysterectomy 6 weeks after.

After I heal from birth and hysterectomy, I will have my tissue expanders swapped for my permanent implants.  I still have "boulders" in place and I'm even more looking forward to providing "pillows" for this new little person, I just wish that we didn't have to wait so long.  Next winter is going to be pretty busy for me.  Lots of procedures and lots of healing.  If you pray, I'd love you to ask for me to be able to handle all that healing as well as the healing from my original battle.

Obviously, due to everything my body has been through the past year and a half, this pregnancy is proving to be really had on my body.  My very first inclination that I might be pregnant was a severe gag reflex.  I remember a couple instances where it took one smell and I vomited.  As soon as I had a positive pregnancy test, I also had morning sickness.  I went through craving something only to smell it and become nauseated.  I went through taking my vitamins and 10 minutes later puking them up.  And of course I couldn't eat for the first half of the day.  Now that I'm almost 13 weeks along (due the middle of September), most of that has subsided.  However, now I'm dealing with some nasty anemia symptoms.  When my blood was drawn at 8 weeks, my hemoglobin came back VERY low.  The OB told me to get on iron supplements ASAP, but even those don't seem to be helping.  I am incredibly exhausted every single day.  I struggle to make it through.  If I am not able to nap, I'm sleeping by 8-8:30.  The past couple of days I have been having extreme weakness, achiness, headaches, and dizziness.  I had blood drawn and will see the oncologist on Wednesday to see what he thinks is the cause or what the plan of action should be.  It's really hard to go about my daily activities feeling like this all the time.

After expressing interest in volunteering my hands and time to the Cassie Hines Shoes Cancer Foundation, I have been invited to attend their board of directors' meetings.  I am so very excited to get involved with his awesome organization and can't to see what my future with them has in store.  I will be going back to school when the time is right and I am hoping to be able to provide professional services for them eventually.  http://www.cassiehinesshoescancer.org/ 

The next chapter of my life isn't as I expected it to be.  But two years ago, I had no inkling that I would be where I am now.  Life is funny like that, you know?  It is what it is.  We move forward with what we have been given.  XOXO to all my readers!

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.  :(

That was That

I completed chemo treatment #8 yesterday.  That means I'm done!  At least for the time being.  We still don't know exactly how aggressive the cancer was/is, so we'll have to see after surgery, radiation and future scans.  I pray that the chemo did its job and was able to rid my body of any lurking disease.  It did its job on my primary tumor, there most definitely was measurable shrinkage though not complete dissolution. 

The next step is surgery.  I go to see my surgeon on January 8th, so we should have a game plan then.  It looks like I'll be out of commission for around two weeks, so I'm asking for help now.  If there is anything you can/ want to do to help, let me know as soon as you can; phone call, text message, FB message, or even comment here.  I want to get my ducks in a row before it gets too late.  I will be having a complete double mastectomy- meaning no lifting, no reaching, etc.

That's the only update I have.  Other than my grandfather's passing, I had a very relaxing holiday season.  :)  I hope all my readers did too!  Tomorrow my family is taking a road trip from MI to MD.  Hopefully chemo side effects don't make the ride too terribly uncomfortable...

The New Drug

Any time I try to seek out answers about experiences (regarding treatments and side effects), I get the overused "everybody is different."  This answer seriously drives me crazy.  I KNOW everyone is different.  I want to know what's normal and usual.  After the first drug (Adriamycin and Cytoxen)wasn't exactly what I was expecting (both better and worse, if that makes sense), I wanted a silver lining.  I had read that the second drug (Taxol) I was supposed to be given was "more tolerable" than the first one.  I read that it didn't make you feel "like a sick person."  I read that it causes mild neuropathy and fatigue.  I also read that it can cause joint and bone pain.

Unfortunately I was NOT prepared for the joint and bone pain I ended up with.  Thursday after the infusion I felt okay, just like all the previous chemo Thursdays.  Friday I actually felt pretty good.  Saturday I woke up sore and it got progressively worse throughout the day.  I went to see a movie on Saturday evening and was so incredibly uncomfortable.  I couldn't sit still in my chair.  It felt like someone had set fire to not only my bones, but my muscles as well.  I walked out of the theater and started crying.

Sunday morning was a bit better but as the day wore on, I was seriously on the verge of excruciating pain.  I alternated the Tylenol and Motrin, but nothing I had in my medicine cabinet even touched the pain.  I couldn't even sleep.  Monday presented the same.  In the morning the pain was tolerable, but by the evening I didn't want to get out of my recliner.  I missed my daughter's parent-teacher conference because I couldn't walk, I couldn't sit, I couldn't concentrate.  Since Tuesday, I've had pain, but it has been more along the lines of the pain I was expecting.  It's manageable for the next month.  And I made sure to ask my doctor for some pain medicine for the excruciating days.

An incredibly generous act that was bestowed upon us was a donation from the breast cancer awareness fundraiser by our high school (alma mater) athletic association.  I never would have expected this help but I am very grateful.  It came at the right time- so we didn't have to choose between paying medical bills or providing our children a Christmas.

5 down, 3 to go...