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...

Halfway Through Chemo

Ah, halfway there.  To me it seems as though it is taking forever, but I'm getting there.  The tumor seems to be shrinking.  Some days are really rough for me, other days are just okay.  4 treatments are done, I have 4 more to go.  My doctor and I decided to postpone starting my new drug by a week so that I will not be having treatment during the holiday weeks.  So now chemo days will be 11/15, 11/29, 12/13, and 12/27.  As much as I wanted to just get it DONE and over with, I am breathing a sigh of relief...

Plus, it allows me to feel "good" on the day I start my new job!  I'm excited to start this job, though it really seems crappy timing.  I'll be working where I did my internship this past summer.  It seems I impressed the office manager and she jumped through lots of hoops to get me in.  There is so much room for growth at this office (and within the whole hospital system!) and I can see me here for the rest of my working days.  It's only a part time position, but that is great for me right now.  I've got this cancer thing going on, plus babies to take care of.  :)

I really appreciate all the cards and messages people have sent.  It helps to know that I've got so many thinking about me and praying for me and my family.

Here Comes #4

I was warned that each treatment would become harder and harder to bounce back from.  I most definitely agree.  I had been feeling "good" the weekends in between treatments, but this past weekend was just "okay."  Luckily I didn't experience any severe yuckiness, but the blah lasted a lot longer.  Treatment #4 is on Thursday (10/25) and this will be the last one of the Adriamycin/Cytoxen drug combination.  Treatment #5 begins a drug called Taxol.

I went for another ultrasound on October 12th for measurement of the tumor.  It seemed to measure the same size, but the radiologist said it looked like edema in the surrounding tissue, which could indicate tumor cells breaking up.  This is progress, so treatment will stay on track- no need to move up the mastectomy.  We're looking at that surgery for the end of January or beginning of February.  Reconstruction will depend on what is found in the lymph nodes and the need for radiation after surgery.

The bills are coming in.  I'm so frustrated.  A 20% copay isn't so bad when a person is perfectly healthy and only needs medications every once in a while...  But when a someone is sick and needs expensive tests and medicines and surgeries, that 20% is a LOT.  We're chipping away at them, but it seems as soon as I pay on one, another one shows up.  It makes my anger at the whole cancer thing so much worse.

Tentative Treatments-
#4 10/25
#5 11/8
#6 11/21
#7 12/5
#8 12/19

Some Pictures

I have wanted to post pictures, but I just now figured out how!  I think I mentioned I was new to whole blogging thing?  Let me know if you have questions or want to see more.  (Yes, eventually I will share the hot pink wig pictures.)

 

 

Mammogram of my left breast:

That bright white spot immediately set off red flags- "suspicious of malignancy."  I would say so!  Search out what a "normal" mammogram looks like.

The pre-chemo haircut:

I knew I would be losing it, so I had a friend cut it almost immediately.

 

 

The shaved head:

This is today, specifically to post on the blog.

 

 

My port placement:

One of the reasons that I am already too self conscious to wear low cut shirts.

 

Adriamycin: The red devil

Notice the nurse's hazmat suit?  They are pumping that poison inside me, along with another chemo drug called Cytoxen.

2 Down, More to Go

I think I'm recovering well from Treatment #2.  The weekend was definitely better than treatment #1 since I made the decision not to take the specific anti nausea medicine.  I still wasn't able to DO anything, but at least I was present for my family.  (Thanks Mom, for spending time with the kids and cooking for us.)  However, the frustration and depression really hit on Monday/Tuesday following.  I found myself wondering if all this is even worth it.  (Of course it is! But those thoughts still invaded my mind.)

I have reached out to an organization called the Young Survival Coalition, which is a community of women who were all diagnosed with breast cancer at age 40 and UNDER.  This disease affects younger women so differently than older women and I need people who have been in my shoes.  When I was so sore and tired and my boys' energy made me want to throw up, I asked them how they did it.  How did they make it through the chemotherapy and multiple surgeries and radiation and the cancer LIFE...  The thing that stuck with me was that they did it one day at a time.  Some days are better, some days are worse.  Of course when the poison that is chemo is coursing through my veins, I'm not going to feel good.  I'll want to sleep.  I'll need someone else to take care of my children so I can take care of myself.  But tomorrow won't present the same as today.  I just have to get through one day at a time.

Today I'm feeling pretty good.  I'm going in public with my shaved head.  Hey, it's breast cancer awareness month, I want people to be aware of my breast cancer.  It started falling out almost immediately after treatment #2, so my wonderful husband shaved it for me.  We match now.  :)  I have a wig and scarves and hats, but I really don't feel the need to use them...

Just something I want to touch on during breast cancer awareness month- Please Pink Responsibly.  Do you know where your money is going when you purchase something with a pink ribbon on it?  Is it going to me or other warriors?  Or is it simply for the profit of whatever company produces it?  Is it going to research, for a cure?  Is it going to organizations and foundations who take financial burdens off warriors and survivors?  I'm all for pink (happens to be my favorite color!), but I'd rather see donations go to reputable places than see a "portion of proceeds" go to that vague place I've never heard of.  We're all aware of breast cancer, we're now even aware of breast cancer in a younger generation.  If you need input on how to pink responsibly, I'd be happy to help.

And if you want to help me/us directly, food is always good.  :)

Editing to add: 

I had a follow up with my oncologist today.  Just to discuss the side effects from the weekend and to look at my blood count.  Everything seems to be going pretty good.  Except my tumor doesn't seem to be shrinking.  Granted I've only had two treatments, the size is quite large and we were hoping for something noticeable/measurable.  He wants me to have an ultrasound to more accurately measure it (we have one from August to compare it to).  IF for some reason the tumor has grown, we will pause the chemo and get my mastectomy done.  Which means treatment will be prolonged as I have to heal enough from the bmx enough before starting treatment again.

I also received the results of my genetic test today.  It turns out that I am positive for the BRCA1 gene mutation.  According to my literature, this means that my lifetime (to age 70) of breast cancer is 87% and my lifetime risk of ovarian cancer is 44%.  Also, my risk of breast cancer recurring after 5 years is 27%.  If you factor in my "triple negative" cancer make-up, which is more aggressive and not treated with targeted therapies, I'm pretty confident in my decision to completely remove both breasts.  I now have to make the decision of when to have my ovaries removed, because 44% is like saying 1 out of 2.  I am NOT taking that chance.  I will NOT be doing this again down the road.  (And for any of my blood family reading this, you might think about getting tested too.  I have no idea where the gene mutation came from.  Where is the history of breast or ovarian cancer?)

A couple of links specifically about MY type of cancer:

http://www.breastcancer.org/symptoms/types/idc

http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior

http://www.breastcancer.org/symptoms/testing/genetic/pos_results

Pinch Me, Please.

It really does feel like a dream.  3 months ago, I was worried about getting in all my internship hours and finally finishing school.  Now that I'm done with school, I have to worry about fighting cancer.  I didn't really think this was the "next step" in my life.  Honestly, I didn't think that cancer would evade me, I always knew it could happen, but at 28?  Isn't it supposed to be for post-menopausal women?  But obviously cancer doesn't discriminate. 

Now I'm recovering from my first round of chemotherapy and the haze that was this past weekend.  I've been told that it only gets worse as treatment goes on- that it is harder to bounce back after each infusion- and I can't help but wonder HOW?  The doctors decided on a dose dense treatment because I'm young and supposedly can handle it, but I'm really not sure I can.  I've got three of my own children that I need to take care of, plus three other ones that I WANT to take care of.  This is not me.  I cannot be weak.

As I updated, Saturday was spent in bed.  I remember barely anything.  No vomitting, thank goodness, but I discovered that the meds that were keeping me from throwing up were actually causing me to not be able to keep my eyes open.  When there's a warning on the bottle that says "May cause blurred vision," I might want to think twice about taking it.  I feel SO much better since cutting that out.  I'm definitely not 100% yet.  Or even 90%.  I'm probably about 75%, but I'm keeping my fingers crossed that I get back to the 90% in order to have my little boy's birthday this weekend.

Right now, the most unpleasant thing I'm dealing with (aside from the this weekend) is the icky mouth.  Chemo kills new cells, so all the cells in my mouth are dying.  I have dry mouth, I have a film, I can feel the skin coming off, and I can't taste anything.  I'm using the rinse that my nurse practitioner suggested to combat mouth sores, but I'm still frustrated.  And my stomach hurts.  The chemo also kills the good bacteria that grows in the intestinal tract, so my digestion is way off.  I eat, but don't digest...

I'm on day #7 and I think my hair is starting to come out.  No chunks or anything yet, but when I combed it out after my shower today, there was definitely more than normal in the comb.  I will definitely be wig shopping in the next couple of days.  And I am planning on getting a hot pink one.  If not now, when?  :)

When I get twinges in my breast, I like to imagine the cancer cells dying.  When I was first diagnosed and felt anything, I disgustingly thought about how the disease was rapidly multiplying.  Now it's on its way out.  I can't wait to see the tumor shrink- to have measurable results.  Both my oncologist and my surgeon think this will be the case.  I still am not sure what the future of my treatment will be, though I am keeping my fingers crossed that once I have my mastectomy, my margins will be clear along with the lymph nodes.

Oh, and by the way, everyone is invited to my 30th birthday party.  I used to say that this would be the last year I was going to age (I turn 29 one week from yesterday), but I have decided that my 30th birthday celebration will be a big hoopla.  This cancer will be GONE, and that is a great reason to celebrate.

Not feeling so hot...

Yes, chemo sucks.  Thursday after the infusion, I felt fine.  Friday wasn't great, but I could function (managed a shower and a trip to the doctor).  Saturday I barely got out of bed.  I haven't been throwing up since the medicine they sent me home with takes care of that, but I am so incredibly tired.  I feel like I have the flu.  I can't stand too long without getting dizzy or nauseated.  It takes all I have just to use the bathroom.  Keep your fingers crossed that this only lasts a couple of days because I really don't know how I'll handle 4 whole months of feeling like this.  The good news?  One treatment down, only seven to go (we hope).

I'll try to update more when I get my wits about me.  I also have some pictures I'll try to post.

The Thing Called Chemotherapy

Well, I had my first infusion today.  It wasn't bad at all being in the chair.  I am SO glad I went ahead with the port, because honestly, my arm veins are already exhausted.  And the port is so easy; they poke my chest, tape it steady, and I'm good to go.  I can bring things to do, I can bring things to eat, I can bring a friend, I just can't bring children.  I will be doing this every other week for at least 4 months.

Right now I feel okay.  I'm starting to feel tired, but I'm pretty sure that's because I had a long day and it's getting close to bed time.  We were told that onset of "side effects" can happen anywhere from the night of treatment to four days later.  I'll let everyone know when mine kick in.  :)  Who's willing to babysit again?

As I was walking with the nurse practitioner, I saw my oncologist in the hall.  He made a point to stop me and tell me that the results from the biopsy on Tuesday were negative.  Woohoo!  So treatment will not change at all.  I do not have cancer in the right breast.  And talking about the nurse practitioner, she mentioned BRCA gene testing.  Because if I am positive for that gene mutation, I might want to think about removing my ovaries, too.  At first I didn't think I even wanted the test, as I already have breast cancer and have already decided on the bi-lateral mastectomy and my daughter will start screening EARLY as well...  But now that she brings up ovarian cancer, I will most definitely be tested.

That's all I've got for now.  Time for me to relax.

Another Biopsy

I had an MRI assited biopsy this morning of two different areas on my right breast.  (My original tumor is on my left.)  These two suspicious areas did not show up on my mammogram, they were seen on the MRI I had last week.  We are hoping that they turn out to be benign, but if not it may change the type of treatment I get.  The tumor on my left side is called a triple negative invasive ductal carcinoma.  This means that it is negative for the presence of estrogen receptors, progesterone receptors, and the HER2 protein receptors.  IF I had any of these (positive), they would use a drug that specifically targets those to stop the growth of the cancer cells.  The biopsy today was to see if these masses had a different make-up and therefore need a different drug than what has already been planned.

It was definitely harder to do than the first biopsy and harder to recouperate from as well.  I am in quite a bit of pain now, as I was last time and because I have a pretty large hematoma.  Once they were done, I wouldn't stop bleeding.  So now I look pretty silly with an ice pack in my bra for pressure and relief.

I was supposed to have a "chemo teach" this afternoon to let me know the ins and outs of my medications, side effects, and the like, but when I got to the office, I was told that there was a scheduling mix up and I was actually scheduled for tomorrow.  I have too much going on tomorrow, so I will just have to go in an hour and a half early on Thursday in order to be educated.  As far as I know, everything is still on track for me to have my first round of chemotherapy on Thursday (9/13).  Both my surgeon and my oncologist should have the results from today's procedure by then.

I know a lot of people have mentioned to me to let them know if I need anything.  I definitely appreciate the sentiment, but it's hard for me to ask, and I'm sure when I'm not feeling myself, it will be hard for me to delegate (and perhaps determine what I really need?).  I found a very good thread in an online support community that I joined, but it was hard to read (lots of responses and quoted responses and copy and paste), so I found this.  Support for loved ones during cancer treatment.  You can scroll past the first part since we're not in Australia.  :)

And as an FYI, my cousin has put together a team of my family members for a "Making Strides Against Breast Cancer" walk on October 13 in my honor.  Please consider donating to the American Cancer Society.  http://main.acsevents.org/goto/Courtneyspinkpals

Now I'm Mad!

An update before the rant:  I met with the oncologist again.  I am all set to start chemotherapy on next Thursday, 9/13.  I also have more "suspicious" tissue in my right breast that was found on my MRI.  That will be biopsied as well to see if it is cancer and if it is, what KIND.  This might dictate additional treatment.

Here's the rant:  Cancer is EXPENSIVE!!!  I got one bill today.  Just one, from my mammogram.  I am now in tears.  My funeral would be cheaper.  I am so angry that our insurance only covers 80% of my treatment.  I am now angry our income is well above what would qulaify us for financial assistance.  As if we haven't had enough financial struggles, now we have to deal with THIS.

Today was the first time I cried about this whole situation.  I sat in the oncologist's office and saw a woman wearing a v-neck shirt with nice breasts.  Yes I noticed, I won't pretend.  I was suddenly aware that my chest has been marred forever.  Even if no one will see the scars on my actual breasts, (I think I have already opted to have a double mastectomy and reconstruction), I just had a mediport inserted.  I will never be able to wear a v-neck without feeling self-conscious.  And I have to PAY for this disfiguration.  I have to pay 20% of everything.  And 100% of whatever my insurance thinks I don't need.  Like apparently I didn't need that mammogram?  And I had a comment (I forgive her for her ignorance) today "It's good that the insurance has to pay for new ones."  I don't want the insurance to pay for new ones!  I like the ones I got for free!!  I have to pay for them to be removed so that they don't kill me.

I don't know how I'm going to do it.  I don't know how I can focus on getting healthy and taking care of my children without feeling guilty every minute that this treatment costs so much.  I don't know how I can be thankful that I am getting the treatment that I need to stay alive when it would be so much cheaper NOT to.  This is not fair.  The fact that I have cancer already isn't fair.  The fact that we can't pay for cancer pisses me off.

A Reflection of Sorts

I know it's cliche, but I believe God has a plan for me. 

I'm sure many people have come to points in their lives when they ponder "why me?"  I actually have not asked this question in regard to my cancer.  I know the diagnosis is still fresh, so maybe that's the reason.  Or maybe the reason is that I have seen people die of cancer and others beat it.  God has a plan for each person affected; those who actually had the disease and those who watched them suffer.  It could be as simple as no longer judging others, like the saying "until you walk a mile in their shoes..."  It could be becoming determined on finding the CURE.  It could be raising awareness, it could be rasing money. 

 

The plan could be something great, or maybe I could be His tool to show that cancer CAN happen to a 28 year old.  I have already been told that this has been a reality check for some people.  So I'm glad about that.  Hey you reading this-  Go to the doctor regularly.  Get checked!  I'm not glad that I have cancer, but if just ONE person "benefits" from my cancer, I am glad that I could be a useful tool.

 

Some updates on the medical situation:  I have my port insertion surgery tomorrow (9/5) morning.  I'm anxious about this since this is only the second surgery I've had in my life.  My first and only other one was when I had my wisdom teeth removed right after graduating high school.  I had an MRI today (torture holding still for that long!) and as soon as I got in the car to leave, I received a phone call from my oncologist.  He had reviewed my CT scan and found no spots on any other organs.  I do have a couple of enlarged lymph nodes, but that's not guaranteed cancer and they'll remove those when they remove my breast tumor.

 

Again, let me know if you have any questions!  And if anybody has any tips or suggestions for me, I'd love to hear them.

1st Meeting with Oncologist

Well, we met with the oncologist yesterday.  I'm not sure he told us anything that I didn't already know, but it was nice to have the confirmation of the plan of action.  It all seems to be moving so fast.  It was only 4 weeks ago that I made the first phone call.

I was not given a "stage" since I have not been cut open yet.  My mammogram says it's "no less than 4cm" and the oncologist measured about 6cm yesterday.  Being put into the category of stage 3 does not mean I am going to die!  It simply means that my tumor is huge.  I am having a CAT scan done on Friday (8/31) to look for any other spots.  I will be having an MRI on Tuesday (9/4) to get a better look at my breasts and lymph nodes.  We don't know if it has spread at all but hopefully we will after these tests.

The surgeon's office has scheduled me for my port surgery on Wednesday (9/5).  We want to start my chemotherapy around September 13th, so it needs to  be in 7 days prior.  A couple reasons for doing chemo before surgery- to nip the nasty cancer cells in the butt because they ARE the invasive type, and to watch the tumor shrink to confirm that the medicine is working.  This also may provide me with the chance for a lumpectomy instead of the mastectomy.  The doctors are concerned that because I am young and my cells reproduce rapidly, the cancer cells maybe also be rapidly reproducing as well and we want to stop it as quickly as possible.

The doctor is not sure which type of treatment he wants to give me yet.  There is a standard protocol for my type of cancer (invasive ductal carcinoma), but because of my age, he might change it up a little bit.  I could have treatments once every three weeks or once every two weeks. 

In the mean time, I'm searching the internet for support sites, for real information, etc so that I can cope with this.  It still seems so incredibly surreal.  Really, who has breast cancer at 28?  And with absolutely no risk factors?

Because it seems I actually have readers ;), if anyone has questions, post them.  I'll try to either answer in the comments or address them in the next post.

What?!?!

I've never blogged before.  This is my first go at it.  I think I've decided to document everything here more for me than for any readers I might have...

I was diagnosed with invasive ductal carcinoma today.  At 28 years old.  We don't know how advanced it is yet, since my only biopsy was of the lump in my breast. 

I suppose I'll start at the beginning.  I noticed a lump in the upper left quadrant of my left breast about two months ago.  I searched the internet, asked the advice of my friends, and decided I wouldn't worry about it yet.  I thought perhaps it was a cyst or just dense breast tissue, but the lump didn't change throughout my menstrual cycle.  It was not affected by hormones.

I called my OB/GYN, my husband made me, after a whole cycle went by with no change.  I had my appointment with that doctor on August 8th.  She did nothing to calm my anxiety, instead told me that we needed to have a diagnostic ultrasound and mammogram done.  A mammogram at 28?!  What?!?!  Leaving that appointment, I think I made peace with whatever diagnosis I would have.  It is what it is.

I went to the Breast Center on August 15th, and nervously had an ultrasound done.  The tech walked me back to the waiting room (for women with no shirt on) and told me to wait while the doctor looked over the ultrasound.  She came back and said we would need to do the mammogram.  I got my boobs squished and once again was walked back to the waiting room and told the doctor would look over the results.  It seemed like an eternity went by when not only the tech came back but a nurse came with her.  I was escorted into the doctor's "office" which had my mammogram and ultrasound films up for viewing.  I knew what was next.  It was confirmed to me that it was in fact an abnormal mammogram and the area looked "suspicious."  The nurse was kind enough to set me up with a general surgeon for an appointment for a biopsy.

My biospy was on August 21st.  I was surprisingly calm going into it.  It is what it is.  He performed a core needle biopsy, where an incision is made and a large hollow needle is inserted to collect tissue (like coring an apple).  He took five samples.  I was told they would call me when they had the results from pathology and that I'd have to come back to the office.  The procedure wasn't as bad as I thought it would be, but I was definitely incredibly sore afterward.  I couldn't pick up my baby, I couldn't push a shopping cart.

And then came this afternoon when I got the results.  I got a phone call yesterday from the nurse saying that they still had no lab report, but they were sure they would have it today, so we set an appoinment for me to meet with the doctor again.  Again, I was surprisingly not nervous going into the appointment.  It is what it is.  He asked me how I was doing, asked about pain and soreness, and then hesitated.  Again, I knew what was next.  Breast cancer, at age 28.  What?!?!

I have no risk factors.  Other than being a female.  I am young.  I started (and finished) having children before I was 30.  All three were breastfed to some degree.  There is no history of breast cancer in my family.  Yet here I am with invasive ductal carcinoma.

I have a meeting with an oncologist next week and I will also have an MRI done to get a better picture.  The plan of action is agressive.  Chemotherapy will most likely be the first step.  I'm not in denial nor am I angry.  It is what it is, but what?!?!