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