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.