July 15-21

It has been a busy week. So last I posted, on the 15th I had a full day of doctors. Monday night Jeff and I took off to Sacramento area to work on a house that needed tile work and a few other projects. We got up there, bought some of the materials and headed to the house. We were late getting away from our house since we were later than we had thought we would be with doctor appointments. We were beat. Jeff worked on one of the projects for the house and then we crashed. In the morning we got up and moving, starting on projects, when we found out painters were still working on the house. People were in and out. We had forgotten a few things from home so we packed up and headed back..that is one stinkin long truck ride! We we got home and I got a phone call from the pulmonary nurse. They want me to go in for a breathing test tomorrow. So glad we had come home so I could do the test. July 17th: Head to the hospital for breathing test. Now I had done a breathing test years ago at a allergy office and I thought it would be something like that..nope. First I had blood drawn. Not the usually place on the arm. This was the first time I had blood drawn from an artery in my wrist. Oopps..my blood pressure is too low. I have to drink a bottle of water..(I don't like water..) The lady doing the testing and the blood draw is amazing. She has to draw the blood by feeling where my heartbeat is. She has to so carefully insert the needle being careful not to go in to far. She is so careful and so gentle, it doesn't hurt while she is taking the blood. The tube is filled by your heart beating. SO COOL! Then lots of pressure and I can't do anything with my wrist for the rest of the day..no leaning on it, no lifting, nothing. After the blood draw I am put into a round booth that has a seat in it and it has a clear door that can close around you. A weird, how to describe it, arm with a mouth piece and cords is in the booth with you. You put your mouth on the mouth piece and have pinchers put on your nose and the door is closed. That is a weird feeling trying to breath on this contraption with your nose pinched off. You can hear the lady talking to you from a mic...she puts you through a series of breathing, hold your breath, breath in as much as you can, blow out as much as you can, in out in out really fast. Now doing all this outside of the booth would be easy! But in the booth with this thing you have to blow into..WOW..not so easy. Then she has be take 4 puffs of an inhailer. Wait Wait Wait..ok, lets do some more breathing test! I come out of that thing so tired! Who would think breathing would make you so tired?! Well, after the appointment we pack back up and head back up to the job. It takes us 3 days to prep and lay tile in 3 bathrooms. I am once again in awe of my husband and what he can do. He does a fabulous job with tile. Who would think of how much time and energy even that goes into doing this job. I learned really fast how to screw down backer board and how to run a wet tile saw. Two bathrooms were upstairs so there was a ton of up and down. I am finding that stairs are one of my Nemesis. I am getting frustrated how I feel, just slowly waking up and down the stairs. It takes all my energy and it is hard to breath. I actually started noticing it at work this past year, every time I walked the stairs at work I would be really winded. It is hard since in my head I hear, "If you do it more it will become easier!" But it doesn't. It gets harder. This week for some reason it was REALLY hard. I am finding that my energy only last for a short time now before I have to rest. I am also finding that I have to take naps during the day. WHAT?!?!? Am I that old now? I have been doing a lot of research on the internet and I have found that cancer literally sucks the life out of you. I don't feel the cancer inside of me. It doesn't hurt. I don't even know that it is there other than the doctors have told me it is there. The only thing on the outside to remind me is I have a bad itch on my breast. Thus when my energy level is so low I get really frustrated. I know I can walk up and down stairs!!! I have been doing it my whole life! Why is it so hard? It is interesting how the mind can tell you one thing but the body will fight the mind and win. Another nemesis is heat. I used to love being warm. Summer is my time of the year. Not this year. I am too hot! I can't breath in warm air. Being outside in the warm SUCKS the energy out of me quickly also. I so do not want to see my power bill this month. We have had most of our days this month over *100. I have two doctor's appointments on Monday. I am hoping/scared that we will set a date for surgery. I know Heavenly Father wantes me to learn something from this experience. He needs me to grow and stretch. The growing and stretching is always hard.

July 15

Wow! Today was a long day. I had three appointments with three different groups. Genetics, surgeon, pulmonary. I am going to make this a really quick update and then come back and fill in better. Sorry..it may be confusing.. Genetics:Medi-Cal denied testing,(Why we don't know) but the doc is going to appeal..plus with info we found out in the next appointment, pretty sure it will go through but don't know how long it will take. Surgeon:Ok, hold on..don't freak out yet..the mass in my lungs is cancer. Not related to the breast cancer. It is called a Carcinoid and can show up anywhere in the body and where it landed is probably the best place it could land. It is in the middle lung airway. We thought it was on the outside of the air way but it is covering it. What is weird is that I can still breath fine and the lung is passing air fine. I will learn more about it later. Pulmonary: They said that this is SOOOO slow growing, it has been there for some time, probably years! It will not conflict with the breast cancer and they think I should go ahead with the breast first and then come back to this one. On Monday nights, all the heads of departments come together and have a big meeting going over all the important charts. Mine just happens to be one of the really important ones. They will have a big discussion about me and then tomorrow I will get a call telling me what they recommend my path of distruction/healing they recommend. Again it is a hurry and wait. I will have to update more later... I'M OK!!!!

July 8-12

For some reason the blog is wigging out and wont let me spell check or change fonts or anything so I am not sure if this will work..lets try! What a week this has been... July 8th: I was referred to the Women's Center to see what is going on with my lower half. I thought I was just going in for a consult to talk about how I am probably in perimenopause so I didn't take anyone with me. I love that it is a teaching clinic/hospital. There are so many people looking over all of your information. I had a student take all my history and information. She took her time and really went over everything. Then she stepped out and talked to the doctor in charge. The student and the doctor came back in and talked to me about what they wanted to do. They wanted to do a uterus biopsy. Would that be ok with me? Why not..go for it! The student was just there to observe this time..They both did not know what Paget's looked like so of course I flashed them. I don't think they were expecting that but now they will know how it may look on someone else. So I had the nurse, student and doctor all in looking at my lower half..we are very close now. They promised that if they saw me at the grocery store they would still make eye contact and say hello to me. To do a uterus biopsy they stick a long straw looking contraption up you and scrape the inside of the uterus. (Of course with all the contraptions holding you open)..Now the room is FREEZING, you have very little clothes on, you are trying to stay RELAXED so it will be easier to get the biopsy and would you not guess...you have the urge to pee. That was the hard part because after having 4 children..well, you know... The doctor took two biopsies since I was doing ok without her having to numb me..it REALLY hurt but I am learning not to jump or pull away when people are poking and proding me. I won't know the results till the 22nd. I was told to go home and take it easy for two days since I will be bleeding from the biopsy. BLAH! I hate to hold still! I held still for the rest of the day but then on Tuesday I went shopping for some hats and scarfs. I want to get them when I am still feeling good and Walmart has some good prices right now. After I went to lunch with two really good friends and laughted. It was so good to laugh. Yep, felt it that night! Yuck! July 11th: Lung Biopsy! I had to be at the hospital at 8, no food or drink since the night before, no makeup, no jewelry, comfy clothes. I didn't really know where in the hospital I was suppose to go so we went a little bit early. We found the place and were on time. (We, meaning my sweetheart and myself..)Jeff was my driving buddy since I probably wouldn't be able to drive myself home. They took me into a big room that had several beds in it with curtins seperating the beds. There were three other people in beds with nurses working on them. I had my own team, including a student. The student was REALLY nervous like HE was going in for the procedure or something..I got changed into a "gown" and hooked up with IV in my hand, thing on my finger and a cuff on my arm. The nurse took blood from my hand and then said she needed a urine sample. SERIOUS..with all the stuff on me..OK...I must say I was pretty good getting it! YEP! NOT PREGNENT! WHOOT WHOOT..(I could have told you that!) OK, 9:00 they wheeled me into another room. A small room. The drug man put some stuff in my hand IV hookup..he called it "You just don't care" juice. Man that stuff works fast! Next thing I know a deep voice is telling me to please cover my mouth when I cough. I didn't know I was coughing. I am SOOOO groggy. I kindof remember wanting something to drink. Then I was out again. Some how I have gotten my clothes back on. I know they put me in a wheelchair, but I don't remember the ride out. Then I am in my truck. NOPE, I am walking up the stairs to my room to get my jammies on. I climb in bed and remember Jeff coming in telling me one cup has water in it, the other has ice and a lid to keep the cat out of it. BOOM I am out again. I think somewhere around noon or one I woke up and made my way downstairs to the couch. I am so nauseous! I have a bit of a sore throat but not even close to what I thought I would have. My head hurts and it is all I can do to not throw up. This was an all day thing. I HATE THAT FEELING! I was able to drink some soda and some water and finally got some food in my tummy but it really didn't help. Around 7 I finally took the last of my headache pills. It helped! Jeff showed me the pictures from the procedure. WOW! So on the CT scan it showed the mass was on the outside of my airway, inside my lung. The pictures from the procedure shows the mass in my airway totally blocking my airway to my lower lobe. Now I have air getting in and out of that lobe so it doesn't make sense. The doctors are baffled! They took a little scraping from the mass but didn't want to rupture it. I should know more on Monday. I hope. Today I feel like a pinata! I hurt all over..my chest is fine..throat a little sore..BODY HURTS! My mom thinks I fell off the table..oops. I was coughing a lot yesterday and it felt good! Today when I cough my back hurts! It is really hard to cough. I am messed up! I went to see my chiropractor friend who adjust my back and neck. It helps but I still hurt. So Monday I have appointments starting at noon with one doctor and finishing up around 4 with others. I have an appointment set up for August 12 with the plastic surgeon which tells me my surgery won't be till the middle of August or later. I hope I am wrong. I don't look forward to hurting and going through all the YUCK, but I am anxious to start feeling better. I will update on Monday when I know more.

Broken Boob! (Also known as Paget's)

This is more for me to journal than to really share with anyone.  I am open to sharing what is happening and if someone else can be lifted from it, then I have helped more than myself...

This may be a bit TMI, so if queezy, don't read.  I am sharing TMI!!!!

Several years ago I had some sores under my arm, like a boil, that really hurt.  Then there were several of them.  Some of them actually came to the surface and opened up and lots of puss and blood came out.  It was very painful.  About the same time on the tip of my nipple, I had a crust.  An ITCHY crust.  And a little bit of a bloody milky discharge.  The itch was what was really bothersome.  The sores under my arm healed up but the itch on my nipple just would not go away.  I tried EVERYTHING over the counter thinking that this was just a yeast infection, or eczyma or something...if anything it started spreading.  The sores under my arm came back.   I went to my OBGYN..he put me on antibiotics and sent me to a breast specialist.  The breast specialist sent me for my first ever mammogram.  Boy, that was fun..(said on one ever!)  The specialist said she couldn't find anything wrong and said to keep an eye on it.  The antibiotics got rid of the sores under my arm for a few months, but not the itch.  I just lived with it!  The sores came and went, but the itch spread. A few years go by...
So we are now up to about February of this year:
 My cycle has really been a mess, I am itchy all over, I don't sleep, I am tired all the time, I don't feel good..AHHH..I am in perimenopause..says my OBGYN.  My thyroid panel comes back perfect.  My harmones are fine..I go to urgent care..more antibiotics and creams, but nothing gets rid of the itch.  Back to my OBGYN...here, take some estrogen cream..that should help...WRONG...

  My dear friend who just got her Masters in Nursing says, "Hey, your visiting teacher works at a womens clinic...CALL HER.." Now I hate pulling the VT card, but I was finally at my end. (Now how I feel about VT is a WHOLE nother story..that I will save for another time..) So I texted her.."Hey, my friend..Can I pull the VT card on you and ask for some help?"  She was more than willing to come to my home after a LONG day at the clinic, dealing with people all day..to come look at my owies. 
She took one look at my owies and said, "Hey, that is Paget's Disease!" Of course I have never heard of Paget's Disease.  She also did a swab of the gunk under my arm that has now spread to my breast and the other arm pit..Then said I needed to make this official and I needed to come into her office ASAP.
March: She got me into her office and the swab had come back..MRSA!  NO WAY!  My Dad and his sweet wife had been battling MRSA themselves, my Dad almost died from it!  So it is a family thing...crazy..
So she put me on antibiotics and sent me to have a mammogram/ultra sound done.
April:
Have my mammogram and ultrasound.  They don't find anything..That is good. But frustrating at the same time.
June:
 On the 3rd I had a biopsy done.  They did a punch biopsy right in the middle of a growing area and then gave me 3 stiches and told me to hold still for a few days..basically don't go back to work for the rest of the week. The stiches didn't bother me so much as the dressing to cover everything kept the heat in on my breast and made the itch on my breast explode!  I kept ice packs on it to keep it numb.  That helps a bit but I was sure happy to get the dressings off!
On the 12th I get a phone call from my friend..(Now refered to as "My ANGEL") she called to tell me it was indeed Paget's Disease.  HURAAY!  I am not crazy!  Now go have a MRI.
On the 12th I have my MRI done.
The 14th I have an appointment to get my stiches out, "you will now need to see a geneticist and a plastic surgeon..We will try to get you in ASAP", and a quick goodby from the doctor that was doing the testing..she is now off to a clinic back east...

Now I have had time to do my research on Paget's Disease.  It is cancer.  But if caugh early enough, 95% success rate. (Oh, and there are two types of Paget's Disease.  One is in the blood/bones and the other is of the breast.) Most of the time, but not always, there is a tumor that is inside the breast. I don't have a tumor. But I do have little offsets of cells..just a few..

 wait..wait..wait..They found more things on the MRI..you need a CT scan.
On the 19th do a CT scan..  wait..wait...wait...
22nd..phone call from my Angel..they found a mass on my lung..(mass meaning about 2cm) now need to go see a pulmonary specialist.  They need to do a biopsy of my lung to find out if it is related to the cancer.
So this puts off even seeing the geneticist..which pushes EVERYTHING back...
I am NOT good at waiting..plus the fact that I like a time line for things.  See the doctor on this day, test done on this day, results on this day, surgery this day, all better this day!

Now lets pause and talk about the emotional side of all this.  For several years now I have not felt good.  I have been frustrated and I push myself because I like to think I am not a lazy person.  I have felt that maybe I was doing something wrong..not getting enough sleep, not washing my bra's enough..wrong soap, wrong cream...To have someone say, "Yes, there is something wrong, and No, you didn't do anything wrong" is amazing.  FINALLY! Do I feel that everything that I am feeling is associated with the Paget's? Nope..I really think something else is wrong but I find that doctors only focus on one thing at a time.  Even though I know it is all related!    I know that people freak out when they hear the word "CANCER".  I have lost SEVERAL friends and family memebers to cancer.  IT is a UGLY thing.  But this is the FIRST time I have ever heard of Paget's and I am the only one I know that has it.  The more I educate myself, the better I feel.  The unknown is the hardest part of it all..how will it "FEEL", how will I "REACT" to everything, how "LONG" will it take?  I am SOOOO blessed to be married to an AMAZING man!  I KNOW he loves me.  Right there makes this so much easier to go through.  He is right there with me!  The best part is..he is NOT A BOOB MAN!  He is just fine with them being taken off! HA!  Breast are nowdays, an assessory!  Just like hair is an assessory.  Yes, I will loose my hair with chemo and radiation. (I won't have to shave my legs!!!) I am kindof interested to see how it will all grow back since most have a different color and texture when it comes back. I have had my hair short for years so to go a bit shorter (ok..a lot shorter) is not a big deal. Many girls at the school where I work have been shaving their heads to support St. Baldricks.  They are beautiful! 

June 27th..I see the geneticsist...Won't get results back for several weeks..What did I learn from that appointment..That once again I am a FREAK OF NATURE!  There is no rythme or reason for this cancer..I am that 1% for everything. Will the test come back with the precurser for Cancer..Don't know..Doesn't matter...I still have it!  Knowing if I have the precurser for Cancer will not change my decision on how to manage the Cancer. Please do not ready any anger into what I am saying.  There isn't any.
July 1st..I go in for a follow up visit to meet the surgeon and talk about a time line.  We are waiting on the genetic test.  The problem is that I am not sure if the test will be paid for, if not, then the test was done for nothing.
Then I go over and meet with the Pulmonary Specialist.  She shows us the MRI and CT of the spot they found on my lung.  It is in a weird place.  It also has calcification on it which says it has been there for awhile.  Now I am waiting for all the doctors to have a meeting tonight to decide how they want to proceed.  What a great idea!  I love the idea of all these doctors having a discussion about all the people they are taking care of and figure out the best plan of treatment.  It is like having 12 doctors all giving you a second opinion! I will know tomorrow if they decide to do a lung biopsy.  If they decide to do it then it will be the end of this week or the beginning of next week...Hurry and Wait!
July 2nd...I got the phone call..SOOO the mass they found (it is so small I don't know why they call it a mass) is in a weird place, just outside of the airways.  It is an almost perfect round ball shape with calcification on it.  It is in NO WAY connected to the BC (breast cancer) but everyone is very interested to know what it is.  If it is cancer in my lung then they do chemo before they do the mastectomy...which the doctors really do not think it is, but again are wondering what IT is... I am on the schedule for the biopsy on July 11th. BUT...I have an appointment on July 8th with the OBGYN department to see if ovaries are doing anything fun. WEEEE..its a bit funny how NOW they want to know what is going on with everything inside of me (but I STILL ITCH ON MY BOOB!)
So now we are all caught up with this side of my life.
I am finding it hard to keep up with all the texting and emails, I don't know who I have told what to and who I am missing.  I am going to post this so everyone can check here for updates.

This is a learning moment for all of us.  I am so THANKFUL for all the prayers and helping hands.  I am so blessed!

What in the...

OMGolly, I can not believe that I have not kept up on my blogging...So what have I been up to?  Well, I can't really remember to tell you the truth.  Some high lights that I can remember...

This one graduated High School and got a GREAT job at a eye doctor's office...(She is making more money than her mom!)  HA!

 

This one came home from Specialized Training with the Army and is looking for a good job while earning some play money working at Dick's Sporting.  He needs money to go play with this sweet girl!

 

This sweet family, on New Years Eve...Had a Wedding!

 

 

I loved having all our family together!

 

Then....This week, 3-13-13 at 3:00...These two got married!

 

Everything else is a blur at the moment!  I love my family!!!!!!!

 



 

 

 

 

 

 

 

 

Klaira Graduates!

She is SO PRETTY!

Slept through most of it!

Coqui and Klaira

Keana and Klaira

SHOW IT!

Go Broncos!

Its so COLD Auntie!

Our Pretty Girls!

Crazy Face!

Proud Parents!

Milestones

A milestone is one of a series of numbered markers placed along a road or boundary  at intervals of one mile or occasionally, parts of a mile.
Milestones are constructed to provide reference points along the road. This can be used to reassure travellers that the proper path is being followed, and to indicate either distance travelled or the remaining distance to a destination. 

When you have babies, you never think about all their "milestones" while they are having them.  It is only now that we have finished this one, that I can look back and actually see it!  WOW!
I am so proud of our children Young Adults! 


Coqui 2005



Keana 2006



Colton 2008



Klaira 2012  


 

Long time ago!