Sunday, January 25, 2015

What a Difference a Week Makes!!

Last week I was such a basket case!  What a relief to be feeling more mentally stable and to not be crying all the time. This week has been pretty good.  My mom has come over a few times to help me on my quest to get my life in order, and together we have accomplished a lot. (Thanks Mom!)  I am de-cluttering and reorganizing so I can feel some sense of control, I think. I have had a number of offers from friends to come help me, and I am so appreciative, but that is hard for me.  I think it would totally be fun to have friends over helping me, but I wouldn't know how to put them to work.  Most of the time, I don't know what to do with all my stuff, much less how to tell other people what to do with my stuff.  I think I will have a really big garage sale this weekend to clear out all of my eBay stuff.  I don't think I will be selling for a while, and I have been tired for years of all the accumulation.  If I ever go back to selling stuff on eBay, I will just have to start over.  What a relief!  I think the clutter alone may have been what caused the cancer.  (Not really...but kinda...naw!)

Speaking of what caused the cancer...I sure hear a number of suggestions.  One I hear a lot is sugar.  Anyone who knows me, knows I love my sugar...and I love to wash it down with milk (another suggestion).  This is how I feel when someone suggests to me that I need to give up sugar if I don't want cancer:
Recently, I read an article that was titled something like..."10 things I wish I had known while going through chemotherapy."  I really like the one that what you want.  You won't feel much like eating anyway, so anything you CAN eat, you should eat.  It went on to say not to worry about getting cancer...YOU ALREADY HAVE CANCER!  That is what the chemo is killing...all the cancer, even the ones you don't know about.  Right!  Just the same I am re-thinking my diet.  There are many people who have much worse diets than I do, who haven't gotten breast cancer.  They eat sugar, meat, drink milk, smoke, lay out in the sun, breathe fumes (while in the state of California), and don't have breast cancer (yet anyway, I guess.)  I think it would be impossible to pinpoint why I was the lucky one.  I feel kind of like I am in the Hunger Games, and my name was drawn.  Fortunately that is were the comparison ends. 

OK...So all the information is in.  Last week I went in for a bilateral MRI.  That was relatively stress free.  I feel like I have better control of my emotions now, so it was fine.  With that they have you lay down on your tummy on a bed which as two appropriately placed holes.  My biggest fear at that time was that the slides on the sides of the hole would be cold... eeeck!!    Then I had to hold still in the TUBE for 30 minutes while I am face down with my face resting on a cradle which seemed comfortable at first, but wasn't really after a few minutes.  30 minutes is a long time for me (especially) to remain consciously still.  It's too noisy for sleep, so I passed the time playing World War Z in my memory.  I tried to think of all the details I could remember of the movie.  Just about the time my movie was over, so was my MRI.  (This is also a good way to fall asleep when I have trouble.)

The next evening, I got the results, which were relieving if only because news that has gotten progressively worse over the past 3 weeks...didn't.  The MRI found a 2.2 cm tumor with a tiny 3 mm nearby, no sign (yet) of anything in the lymph nodes, and everything else all clear.  The 3mm was a surprise, but it is nearby enough that I don't think it will create much of a problem.  The news made me breathe a sigh of relief.  Cancer spreading to the lymph nodes creates a number of problems and would move me to Stage 3.

After my MRI, I had a consultation with one of the ladies at the imaging place, she told me everything about my condition.  The tumor is Grade 3 and shows a number of signs of being aggressive.  Also it is Estrogen and Progesterone positive.  Did you know that most breast cancers are fed by our female hormones?  I never did.  That means that, after all the chemo is over,  I will be given medicine what will kind of throw me into instant menopause to remove the "food supply".   She talked about surgery, reconstruction, radiation, chemo, and hormone therapy which lasts about 5 years.  I left the consultation, feeling calm and accepting.  I don't want to do this, but I have to do this.  So I just move forward.

Next Friday, I will meet with the surgeon.  I moved my appointment up because I couldn't get over the thought that one day there is ZERO cancer in the lymph nodes and one day there is some and I definitely don't want to wait that one day too long.  They have tried to reassure me that it won't happen that way, but my logic says  that is exactly how it happens, and the nurse told me that I would always second guess myself if I put things off.  So if I do this as fast as possible, I will know I did what I could.  I am anxious for my appointment this week.  I am living in limbo now, because I don't know what to expect.  I have read so much, but every case is different.  Chemo first or surgery first?  Lumpectomy or Mastectomy? I don't want to take hormones...can I do something, anything else?  It will be a relief when I have a full picture of what lies ahead.  

Sunday, January 18, 2015


Well, here I am...  It has been almost 3 years since I last blogged.  I didn't have a big following back then, and I am betting it is probably down to zero now.  That's OK.  I started this blog in hopes that it would increase my journal! 

Anyway, why am I blogging today?  Because I have a lot to think about.  I can't sleep and maybe it is time to begin journaling about what I think will be the most difficult journey of my life (so far).  I have found in the past that journaling not only helped me deal with my emotions, but it also was pretty nice to have when I wanted to go back and read about where I have been, and how I got through it. 

Really Robin??  "The most difficult journey"??  I think so...I sure hope so.  I also hope it won't be as bad as I fear.  So what could be so bad?  Well............  I have breast cancer. is true.  I am sorry to any of my family and friends who are finding out this way (if you happen to see it here before I ever tell you in person or you hear it through the grapevine).  It's just that I don't enjoy telling people, and thought maybe this would be the best way to spread such news without having to talk to everyone.  I cry every time I say it, think it...or even type it.  I cry uncontrollably.  I want so much to stop crying.  Sometimes I want to be able to talk...and I don't cry and talk at the same time very well.   I can cry and  type, and I am hoping that typing and crying will help me deal with the roller coaster I am on.  Maybe tomorrow I'll wake up and check my blog and see that I never even really typed this...and say WHOA...that was one crazy nightmare.

So here's the scoop....  On Saturday, January 3, Ron is in Utah with family, I'm in the shower doing my not so regular, but occasional breast check and lo and behold, sure enough the dreaded lump.  Really?  Let me check the other breast...  No...there is no lump like that there.  Really?  Check again...still no.  Well, maybe it is a fat lump or is kind of could I miss a lump like that?  It can't have been there very long.  Probably a cyst...I think they grow fast sometimes.  I think I'll Google it to know for sure.  Hmmmm....not looking good.  I had better get that checked.  Thank goodness we just got insurance.  Unfortunately my HMO won't pay for my longtime doctor and the doctor I can see can't see me for nearly 2 weeks. Oh well, I'll just pay out of pocket to see my doctor.  I'm pretty sure he's going to refer me out to get a mammogram and ultrasound anyway.  (Useless 20/20 hindsight....I should have gotten my first mammogram earlier)

Wednesday, January 7.  I see my doctor, tell him I have a lump.  He feels the lump and says, "Yes, that is a big lump."...and I start crying while he writes me up an order for mammogram and ultrasound.  (Why am I crying??  I already knew that was going to happen.)

Thursday, January 8.  I go in for my mammogram and ultrasound.  I have spent hours on the internet looking into this.  Based on the size (I'm guessing 2 cm) and feel (like a little round bouncy ball)  I already know how this is going down.  I have a lump...and I am pretty sure it is not good.  They are going to send me out for a biopsy.    After the ultrasound the radiologist comes in and tells me it is "concerning" and she begins to babble some things I don't understand, and I start crying.  (Why am I crying??  I already knew that was going to happen.)   I ask for clarification and she says something about the lump being "shaggy" and having spiculations.  Hmmm...Shaggy...visions of Scooby Doo flash through my mind and I ask for clarification. It seems that just like skin cancer...if it is round and is not likly to be cancer.  If not...not good.  Shaggy means it has bumps all over...spiculations, little spikey things going out from it.  Both are not good to hear.  Tumor size about 2.2 cm.  I know that puts me in minimum of Stage 2. I spend even more time Googling, realizing or accepting what I know they are going to find.

Sunday, January 11.  Ward Conference.  It was wonderful.  We had many talks that applied so much to my situation.  About being called to the olive press, and how we all, at sometime are called to that press and how Christ knows how help us.    Up to this point only Ron, Sarah, Jacob, my sister Karri, my friend Kerri, and my sister Sara know.   I dread telling people. I have talked to a woman in my ward who just went through this.  Kristin...she has been so helpful and kind and compassionate.  Her husband used to be my bishop and he is now in the Stake Presidency.  He is on the stand today and gives me a kind look.  I think, "he knows". I feel like crying.  We sing "How Firm a Foundation"...I can't just cry here....please stop crying.   I dread the ward learning through the grapevine, but I also am glad I don't have to say it over and over.  I just dread being THAT person.  I am not good at being weak.  I am not good at being needy.   But I guess it is my time to be called, again, to that press.  Kristin assures me that the growth she got from her experience, she wouldn't trade for the world.  OK.

Tuesday, January 13.  Time for a core biopsy.  This time I don't go to the regular imaging place, this time they send me to the "breast center". My sister Karri and Sarah came with me, even though I insisted it was not necessary.  I think I can handle this and I really prefer feeling sorry for myself by myself.  (I'm glad they are there.)  Funny...  In the regular imaging place the mood is different. There people are getting images for many reasons.  Torn ligaments, sprains, broken bones, lumps, headaches, etc.  But the Breast Center is different.  We are all there for similar reasons. It's not like we look at each other and say, "So, why are you here?"  We know and nobody is happy, and nobody looks at each other.

A Core Biopsy is done lying on a table with an ultrasound guiding a large needle through my armpit to the tumor.  Then extracts a sample from the lump.  This is done 3x for me.  The Doctor performing the procedure is very nice and explains what is going to happen.  The attending Nurse is also very nice.  After the explanation,  I begin to cry.  The doctor asks me if I am afraid of needles or just crying about everything... I tell him everything.  I am feeling picked on to be sure.  He numbs the spot...a few times...after I tell him it still is painful, but eventually it stops hurting and the procedure is done in about 5 minutes.   They insert a tiny piece of metal into the lump as a marker for the future. If it is not a tumor, it indicates that "this lump has already been checked out", if it will go away when the tumor is removed. 

Next...another mammogram to be sure the marker shows up, and to give a baseline mammogram for future reference.  They ask me to sit in the hallway to wait.  While I am there, a woman is sitting a couple of chairs down.  We aren't looking at one another, nobody looks at anybody in this place.  So I decide to look over at her and smile....BIG MISTAKE!!  She looks back at me, smiles and winks.  Ugh...I begin to bawl.  Ugh...note to looking at people.

Last the waiting...  They say it can take up to 5 days to hear back...but sometimes as early as 2 days.  I hope it is no more than 2 days.  I already is not good.  I am not being negative like some people suggest....I am being realistic.  Preparing myself for everything that is coming.  6:30 AM....Thursday morning, the phone rings.  It is my doctor with bad news.  News I've been expecting. crying.  Just a somber realization and confirmation of what I have already known, and confirmation that things are about to get messy.  I tell Jacob who is getting ready for school, then I go tell Ron.

Once I received confirmation, I called my sisters, my mom, my brother and my dad.  The word is out and spreading.  Within about an hour one sister, a good friend who was my VT and HT with her husband for many years calls. A few more hours pass and another friend calls.  I don't mind talking to friends and getting encouragement.  It is nice to know you are loved, and going through hard things often gives people an opportunity to show that. 

Friday, January 16...Sarah and Jacob and I spend a beautiful day skiing.  That is so helpful at getting my mind off of things.  I have been thinking about breast cancer obsessively for nearly 2 weeks now.  Just the same, in one moment when I am alone on a ski lift, I begin to cry again. On my way home, I get a call from a patient care coordinator from a surgeon (Dr. Nedra Harrison) that came highly recommended. She is upbeat and happy and assures me that they are with me every step of the way.  She almost makes this sound fun.  They call the surgical center "The Country Club".  She tells me that after I meet with Dr. Harrison, she will match my personality up with the right a dating site or something.  She tells me that the oncologist and I will become good friends.  She assures me I am going to be OK and they've got this.  Hmmm...  cool!

I have an appointment with Dr. Harrison on February 5.  At that time she will do a full check up and tell me everything there is to know about my condition and treatment.  Before then they want me to get a bilateral MRI to be sure there is no more cancer anywhere else.  The appointment is in February because the better insurance (see below) won't kick in until then.  I may not wait because I am nervous about the cancer spreading.  It is said to be aggressive and I am afraid of it spreading to my lymph nodes.  That creates a whole bunch of other problems.  I hope and pray I have caught it in time. 

So now, on Saturday...well, it's actually Sunday at 2 AM I am up writing and crying.  I cry unexpectedly all the time.  I don't seem to be able to control it sometimes.  I just want to feel some control.  My life is in limbo.  The goals and plans that we were making for the year have come to a halt.  Sarah and I were going to go to Alaska this summer...I don't know if that will happen anymore.  Ron and I were making plans to spend our tax return, to build another bedroom on the back.  I think that money will be going toward medical costs now.  We did get better insurance that will cover doctors I like.  I can say I am a little bit grateful for the Obamacare thing now.  My preexisting condition would have locked me into the cheap plan I felt forced to get.  Now we have great insurance...with a high premium, but I think this year it will be more than worth it.  I am just glad I didn't discover the lump in March after open enrollment.  Perspective!

I don't think I am dying...but it is weird to think that if I don't do something I will and probably within a year. On the bright side... If there is a zombie apocalypse right now, the zombies will go right around me. (reference to World War that movie!)  I do a lot of joking around...because it helps me keep my mind off of it, but I think people feel uncomfortable when I do.  I told Ron that when I was pregnant the only thing that took my mind off of my sick feelings was a garden.  I told him I wanted to get one started before I get really sick from chemo.  Maybe a nice garden will help me feel better.  I want to get my house in order.  So much clutter and many things to do.  I don't want to be sick feeling that things are out of control.  I want to make a few meals, but I have a feeling meals will come...and there are some good cooks in our ward.  Is almost like I'm going to have a baby and I want to be ready, only not.  If I have to be sick, I want to be in an ordered house. So much to do and so little time...  I guess the world will keep turning whether or not I get things done.