Last Chemo Party

For my last Chemo I had what I would call quite the party - J.J., Jenny R., Heather, Jen S., Wendy, Matt, and a visit from Dena.  We also called Dr. Kong to see if she could come down and answer some questions, which she so kindly did.  How nice is that?!  All of the Drs. at Froedtert have been so accommodating to us and we are just really impressed with them.  I have also had almost entirely great experiences with the nurses and staff at Froedtert.  My two not-so-great experiences were, in hindsight, mostly my own fault.  I think I was off on those days and blew some things out of proportion.  In retrospect, the people who I had thought were not being so very nice, probably were doing their very best in dealing with a ME who was a bit whiney and possibly somewhat demanding. Sorry about that, guys. Can I blame it on my hormones being out of whack?  Fatigue?  Cancer?  As of this point in my experience, I highly recommend Froedtert to anyone going through a Breast Cancer diagnosis.  Please tell everyone you know - don't go anywhere else!

Well anyway...here are some pictures of our Chemo party.

Jenny R., Wendy Jen S., J.J., me, and Heather

 Missing: Matt - he took the photo

 My Power-Partner, Matthew.

 Dena!  I finally got your picture on the blog!!!!

J.J. and I

 After Chemo, I was awarded a certificate, a very delicious cupcake, and another pendant for my collection.  It says "Journey".

I actually received the same pendant at the end of my previous Chemo, so I am going to give this one to my Mom.  She has done so much for us over this past six months - taking care of the boys every day and especially on Chemo days, making dinner, cleaning everything up.  It has been quite the Journey for her as well.  Thank you, Mom.

"So, Kelly, you just finished six months of grueling Chemotherapy, what are you going to do next?"

I'm going to New York!!!!!

Yup, you heard that right.  My mom, sister, Cathy and I are headed to New York next week.  We will be gone for five whole days and plan to see a ton of shows.  I cannot wait.  My trip to Portland, unfortunately, has been pushed back a few months (hopefully September???), so when I saw super-cheap tickets to NYC, I jumped on them.  (Just gotta get out, just gotta get right out of here.)  I am going to miss my kids as I feel like I haven't seen them much over the past six months, but I just have to take advantage of the little bit of added energy I will have next week and continue to build over the next month before my surgery.  Plus, it is my mom's birthday and we are going to celebrate.  If anyone needs and deserves a vacation, it is my mother!  Can't wait!

Booyah!

This is Benadryl-drunk Kelly writing to say "Booyah!" I finished my last Chemo!!!!!!!!

I've kind of been blocking out anyone who tried to get excited early this weekend because I was worried after last week that I wasn't going to be deemed fit for Chemo and have to push this, the very last one, back, but....  No way!  It's done, people. Done. Done. D-o-n-e.  Done!!!!!

It's totally surreal to think that I am not going to have to do that again, hopefully ever. When something becomes your new norm it is very bizarre to think that that norm is now over and you can now find another new norm. And good luck to you. Hard to believe!

But, I am thrilled to look forward to our family's new norm. One week of dealing with Chemo side effects and then life begins anew!!!! Woo hoo!

Last week my mother posted to Facebook, "Hang in there Kelly Kons!"  I commented back:

     "I got the eye of the tiger, a fighter,    

      dancing through the fire

      'Cause I am a champion 

      and you’re gonna hear me roar. 

So now I say:

     

ROARRRRRRRRRRRRR!!!!!!!!!!!!!   

Goodbye. Hello.

So yeah, there are several reasons why it has taken me so long to finally blog about the Lumpectomy versus Mastectomy decision...  The first of which is because I am still trying to wrap my head around all of its complexities.  The second reason is because I just don't want to think about it.  And, the third reason is that I had a rougher than average week this week -- possibly fighting off a cold that the boys passed on to me or possibly the cumulative aspects of the Chemo have finally caught up to me.  All, I know is that on Thursday I had difficulty moving my muscles, which ached and hurt, and reduced me to a TV-watching lump on my bed all day.  I have experienced these aches in past weeks, but not to this degree.  I hope it was just that I am fighting off a cold because otherwise this coming week is not going to be fun - Kyrie has several musical performances that I must attend or I will be written off forever as the mom who cared the least...or something like that in her nine-year old mind.  Sheesh! The pressure.

Anyway.  As I reported last week, we have been given definite approval for a lumpectomy and now the decision is up to us.  Here is my wonderful list of pros and cons:

Click on photo to embiggen.

As you can see there are lots of reasons to choose a Lumpectomy and not so many reasons to choose a Mastectomy.  But, the real problem as to why this decision is so difficult is because you can't go by quantity, you have to also take into consideration weight.

Now, I really don't think I am a vain person.  I think my friends would tell you that before this cancer nonsense I didn't put a lot of stock into what my hair looked like or what clothes I was wearing and I can certainly tell you that I almost never wore makeup.  I am not a bikini wearer and tend to dress pretty modestly overall.  But, I do like to dress up on occasion and I definitely like to feel like I look good when I do.  I think you know what I mean, because don't we all???

When I think about how I know I am going to choose the Lumpectomy, what immediately follows is a sense of sadness.  Why?  Can you try and see this from my perspective.  They told me I had cancer. That sucked.  They told me I had to have Chemo.  That really sucked.  They told me I was going to have a Mastectomy.  That also really, really sucked.  Then they told me that I would have reconstructive surgery and that they might even be able to rid me of some of my stretch marks (by using tummy fat to do the surgery).  More surgery sucked, but the other stuff didn't sound so bad. I mean, you have to find some good in all of this or it would just overtake you.  And, so I latched on to that goodness.  I mean, if I had to have cancer, at least maybe I would come out of it looking decent.

Now, six months later, I am hearing not only did you have to have cancer, chemo, and still have to have a surgery (oh, and radiation), but when it is all said and done you will also probably be deformed. BUT, congratulations, you can have a better surgery!  Yay........
                                                                                  ........
                                                                                          ........
                                                                                                  ........
                                                                                                          ........
                                                                                                                  ........
                                                                                                                          ........
                                                                                                                                  ........
                                                                                                                                          ........

I guess one additional thing I should probably explain to you is that the deformed area will be right along the the inner cleavage-le position.  In other words, my days of wearing tank tops, scoop neck shirts, certain shaped swimsuits, etc. are likely to be numbered.  I may not be vain, but I like to feel comfortable, and I don't think I will feel comfortable with a huge scar sticking out of my chest region. So, yeah, congratulations Kelly, you can choose only certain types of clothes....For. The. Rest. Of. Your. Life.

Alright, I might be being a little dramatic.  It may not turn out that bad.  We won't know until after the surgery.  Of course, and here's another thing that's hard to convey the weight of on the pros and cons list - we could choose the Lumpectomy only to find out that I have to have a Mastectomy after all.  In which case, I will not have saved myself from two surgeries at all.  I will have added a surgery onto the docket, because "No" they don't just go ahead and perform that Mastectomy while you are still under.  No.  They have to wait until they get the pathology report days or weeks later only to find out that everything isn't clear and whoops, we are going to have to put you under again and make you go through another recovery all over again, and now that you psyched yourself all up for the privilege of getting to keep the breast that tried to do you in, we are going to have to take it anyway...BUT, congratulations, now you can have that reconstructive surgery that you just convinced yourself you didn't want anyway!  Yay........

Which basically means I have to pick between two things and try to choose which one sucks less. Lucky me.  (Insert pity party here.)

I am doing my best to "Suck it up, Buttercup!", but unfortunately, this one affects me for the rest of my life, which I hope will be long and eventful.  Goodbye cleavage.  Goodbye chance at youthful boobs. Goodbye almost flat tummy.  Hello boring t-shirts.  Welcome back beautiful stretch marks.

I am 99% sure I will be choosing a Lumpectomy.

Sad News

My friend, and fellow cancer fighter (liver cancer), Denise Kostka, has gone to be with God.  I don't like that they call having cancer a "fight" or a "battle" because it makes it sound like Denise "lost" the "fight".  I would prefer to think of her life as a book.  She has moved on to the next chapter.  Or even better, she is now in the sequel of heaven.  I am glad that she no longer has to struggle, but I am sad for her family.  She will be greatly missed.

Happy St. Patrick's Chemo!

Backlog -- Stardate: Thursday, March 13th, 2014

Well, we met with the Radiation Oncologist this afternoon...or maybe I should say a team of Radiation Oncologists - the Chief, his Fellow, and a Resident(?)  This is the second time I have met with Dr. Wilson and this is the second time that three people have entered the room all clamoring to have a look and a squeeze.  I don't appreciate this very much.  I don't really care to be the monkey on display.  I know it is for a good cause - these "kids" are learning.  Still, I wish I didn't have to be the one naked from the waist up for them to learn.

Anyway...after much displaying of the goods, Dr. Wilson proclaimed that he also felt comfortable recommending a lumpectomy to me.  End of story.

Back to the Future -- Monday, March 17th, 2014

Second to last Chemo done!  Eleven down, one to go!  Amazing!  I didn't think I would ever see this day.  I can't believe that in 1.5 weeks I will not only be finished with Chemo, I will be finished with the side effects (well, almost) of Chemo!  Maybe I will be able to taste food again?!  Maybe I will be able to wake up without buzzing in my legs and arms?!  Maybe my fingernails will grow back and be pretty again?!  Maybe I will be able to hear properly?!  Maybe the Chemo Brain will go away and I will be able to think clearly once again?!  Maybe my hair will start to grow back...oh wait!  It already has!  I don't think I have mentioned this for fear it would fall out again, but it seems that ever since I have been on Taxol - so like three months now - my hair has been growing back.  We didn't notice right away, but about a month ago, it became obvious.  I think I have about a half to three-quarters of an inch of growth on my head.  Unfortunately, the front is not coming in as fast as the sides and back so it isn't really presentable just yet, but it is promising!  Maybe by the end of the school year I will be able to go without a hat!  That would be SO cool!

Matt, Heather, and Steph accompanied me to Chemo this week.  There was a lot of discussion over mastectomy versus lumpectomy.  I don't really feel like going over all of it right now...I think I will save that for another post.  But, unfortunately for Matt and I, I think this is going to be one of the toughest decisions of our life.  There doesn't seem to be one right, easy, or clear answer.  But we were still waiting to hear from the surgeon and what the Tumor Board had to say.

Happy St. Patrick's Day!!!

So, there I was, all hooked up to my pre-Chemo cocktail and the effects of the Benadryl were just starting to take hold.  I was feeling nice and woozy when in sauntered Dr. Kong.  Apparently, it was pretty unanimous - the Tumor Board agrees that a lumpectomy is viable.  They liked her plan of keeping the incision within the bounds of a mastectomy so that should I have to have one in the end, the scars from the lumpectomy would just be cut off and not outside the bounds.  That sounds like a good plan to me.  But, it's just not a very easy decision.  We talked a lot about the pluses and minuses - I will share those hopefully tomorrow - before agreeing that while I am drunk on Benadryl is not a good time to make decisions.  So we have up to two weeks to decide.  I hope to make the decision before then, but it's good to know we can take our time if we need to.

Moving on...the most exciting part of Dr. Kong's visit was when she told us about two research studies that I may be able to participate in.  One involves the radiation portion of my treatment.  That one sounds okay to me, but not ground-breaking or anything.  I will be happy to participate and I don't think there will be any side effects or other to worry about.  The other one, though, sounds very promising, but I have to qualify to participate.  In order to qualify, I believe my lymph nodes must come back from surgery negative for cancer cells.  If this happens and I qualify, I will be given a vaccination that they have shown as very promising at reducing the rate of cancer recurring.  I would really love to qualify for this study, so please add this to your ever-increasing prayer list.  Matt and I later talked to a woman from the research department and she said that this study is in Phase 3 and is "the real deal".  Super exciting!  Unfortunately, being a part of the study means having to go back to Froedtert once a month for five months and remaining there for four hours while they make sure there are no side effects from the vaccination, but I think that sounds fair, considering the possible benefits. Apparently, after that there are more visits and lots of follow-up over a ten year period, but bring it on! Anything to reduce the chance of having to go through this nonsense ever again!  I almost feel like this is something to look forward to.  (Injections?!  I must be crazy!)

Finally, I came home to a delicious dinner, made by Donna Reddy.  I have to admit, I was a bit skeptical - she made us Corned Beef and Cabbage to celebrate St. Paddy's Day, not something I have a lot of experience with, despite having Irish blood in the family.  But, I was looking forward to trying something new.  And, I couldn't believe how good it was! The Corned Beef was juicy and tender, the cabbage such a nice crunchy texture and very healthy!  And, potatoes and carrots as well!  Rye bread! Green kiwi, green apples, and green grapes!  AND shamrock-shaped Jello!  Wow!  How awesome is that?!  Thank you so much, Donna!  St. Patrick's Day at the Kons' Household was fantastic!

I didn't see this till I came downstairs this morning, but the Brandels also brought us these beautiful flowers.

So cool!  That's a Shamrock plant and tulips (and an Irish prayer from Donna Reddy).  I am SO blessed.  Thank you so much Brandel Family!  It feels like Spring in this house with those tulips.  Doesn't get much better than that after the winter we have had.  It's hard to believe the official start of spring is just two days away. Somehow, I think Wisconsin is going to hold on to winter as long as it can!  But, Spring seems so hopeful - new life and new beginnings.  I almost feel as if it is coinciding perfectly to symbolize the completion of my never-ending winter of Chemo to the Spring of transition - Surgery.  Which will be followed by...the Summer of Radiation?...Unintentional suntans???  Hmmm...we will have to work on that one.  But, mid-summer will bring a modicum of freedom!  I hope to participate in this vaccination study, but that is only once a month - so much easier, so much freer!  And, it shouldn't make me sick, tired, or otherwise incapacitated, so I can't wait to be the Mom again!  Woo hoo!

Now, if only we could make this lousy decision and get this show on the road...

See the Light

For the first time since this ridiculous adventure began, I feel like I may be able to see the light.  After 18 bouts of Chemo, I only have two left to go.  The seemingly endless cycle of Monday Chemo followed by Tuesday with a red face from the steroids and buzzing in my arms and legs, to Wednesday or Thursday with a stomachache to Friday being tired from the lack of sleep during the week, to Saturday and Sunday of feeling pretty good, but dealing with four energetic children, and then back to Monday again...  I can see the light.  Two and a half more weeks of this nonsense.

Granted, there is still surgery and then radiation (and from what I hear, radiation gets to be a pretty tiring cycle as well...mostly just from having to drive every weekday to the hospital) to go, but that seems like a shorter sentence (right now anyway) then what I have already been through.

If they can assure me that a lumpectomy is just as safe as a mastectomy in terms of recurrence and whatnot, then I am sure that is what I will choose.  (Triple negative cancer has the wonderful distinction of being more likely to recur than other breast cancers in the first three years.)  Of course, I can honestly say that I am kind of angry with my body, and part of me would be tempted to get rid of it just because it has made me so mad...and caused so much worry and fear in our lives.  We do not need any more worry in this family.

It is too early yet still to make any decisions regarding this, so I should stop speculating on what I will decide, but I can say that I feel like I can see end of this ride.  Something I certainly could not before. There is an actual date on the calendar for the surgery, no matter what is chosen - April 23rd.  With that down, I know that radiation will begin three to four weeks later and thus, depending on what the Radiologist says, I may be able to put it off one more week and go to Portland...or he may say that putting it off is not a good idea and to get it done.  I will find that out tomorrow.  But, I can add to that the six weeks of radiation and that means, that this rollercoaster ride has a departure point of at the very latest - July 18th.  Phew!  Crazy.

And, huh.  Maybe I shouldn't have calculated that all out.  Now that I say that, it seems like a long way off!  Still, at least I can see that there is, indeed, an end-date!  The light at the end of this very long tunnel.  I am greatly looking forward to it!

Decisions, Decisions

Okay, so we have met with the surgeon.  Got some potentially interesting news.  She thinks I am a candidate for a lumpectomy instead of a mastectomy.  What?!?!  That greatly surprised both Matt and I!  Sounds like the MRI revealed a small mass - 1.5cm x .5 cm - but we knew that.  Unfortunately, it is still near my chest wall.

So, I was, of course, disappointed by this.  The goal of Chemo, in my mind, was to first and foremost pull the tumor away from the chest wall (not accomplished) and second of all the best case scenario was Complete Response (also not accomplished).  BUT...she had nothing but excitement for us. Apparently, she never expected it to respond this good.  AND, said it was "no big deal" that it was still close to the chest wall.  Confusing!  She continued to assure us that she removes pieces of chest wall "all the time" and that for someone small-ish like me, it's loss would not even be noticed.

We had lots of questions for her regarding the pros and cons of lumpectomy vs. mastectomy and after looking over her notes from last October, she decided she would like to take the MRI images in front of "The Board" on Monday to see what they all thought.  It wasn't something even considered back in October!  We also are going to meet with the Radiologist on Thursday to see what his opinion is. Frankly, I am not sure how to feel about it.  I don't like these kinds of decisions!  I hope the Board comes back with a conclusive recommendation so that I know what it would be best to do.

In regards to the lack of Complete Response she had two things to say:  First, it is pretty rare, but it can happen where the MRI shows the image of the mass being "enhanced" which they then assume to be still cancerous, but then when they remove it during surgery they find out it actually no longer is cancerous.  Pretty rare, but it can happen, so don't stop those prayers for a complete response. Second, she also said that only one in five people get a complete response, and that in actuality a certain percentage of people will actually see tumor growth during Chemo (unresponsive to Chemo) and so the fact that not only did my tumor shrink, but by so much, was incredible news. She said I did not win the million dollar lottery, but I did win $50,000 in the scratch off.  (I don't play the lottery, so I am pretty sure this is still an exciting thing.  I understand a million dollars is better, but no one turns up their nose at fifty grand.)

Dr. Kong is a pretty positive person.  I enjoy her attitude.  But, as I told Matt, I feel snarky about all of this.  I am completely thankful that the tumor has not grown, but disappointed by not having achieved the complete response (at this point, anyway).  I was also still focused on the positive side of having to have surgery - that I would get to have an entire B size breast size when this was all over with.  Now, they are telling me I may get to keep my breast, but that I will still have to have surgery, but with no silver-lining of a B-cup.  Sorry for the TMI there, but what can  I do...this is the dilemma I am being faced with.  I mean, if I had to have cancer, I may have well gotten something out of it.  Not to mention, they still have to take some of my skin, so I will have a nice scar from that and potential "dimpling" which she couldn't tell me how bad it would be until after doing it and seeing what happens.  So, deformed breast on top of it.  But, I don't lose my breast.  Ahhhhhhhhhhh!  So frustrating.  So, we will wait and see what the Radiologist and The Board says.  When all is said and done, all I want, no matter what they recommend, is for this cancer never to come back again.  Can I get an Amen?

Amen.