Wednesday, August 25, 2010

The road has become longer and more bumpy.

The bone scan I had done on Saturday was GOOD! It came back nice and clean. :)

Monday - A day I wish never happened. It was awful. It was human torture. Almost the worst pain I've been in. Kidney stones was right there with it. Anyway it was pretty bad. I wouldn't wish this on my worst enemy.
I thought and was told it would be done under twilight. I can totally handle this. EGH WRONG!!!!!
The doctor comes into the room to give the details for the procedure and answer any questions I may have. He explained that I would NOT be under any sedation or twilight. That in fact I would be awake and aware of exactly what was happening. That there was a 25% chance my lung would collapse and that there is a 35% chance of internal bleeding. All of which would be normal and there would be nothing they could really do for it. Oh yea! Who the hell signed me up for this? The Dr. was very matter of fact seemed to have no feelings or sympathy. At one point I said so your telling me your going to stick needles through my chest to my lungs and I'm going to feel all of it. Well we will give you some paid medication that should help. Ya let me just tell you the "Pain meds" he should of just saved them for the next patient it did NOTHING!!!!!  I had a complete and total break down during that procedure. I knew it was coming eventually. I just didn't think it would be at that moment as I had four needles sticking out of my chest. The nurse says to me as I'm balling Whats wrong? Lets just say she is lucky I couldn't move at that moment. The last four weeks of my life have been very hard and this procedure put the icing on the cake. It was a reality check. This is only the beginning of what is to come. The worst part was when he removed the last needle. He said to me ok on three big breath in. Oh Dear GOD HELP ME! He pulled it out as fast and hard as possible. I'm not sure how my lung was not dangling on the end of it. I had extreme back pain. The nurse said yep its normal we probably hit a nerve. Oh gee well thanks can you fricking give me something to at least take the edge off. Two pain pills later still had an extreme amount of pain. It was very hard to breathe. I also had gargling of the blood from my lungs. That was disgusting and scary. So long as it was not more that 2-3 tablespoons of blood at a time it was considered normal.  After the procedure I went to recovery for several hours. So long as I didn't move and kept my breathing suppressed I was ok. When it came time to stand up forget it. The drive home was a long torturous one. BUT BUT BUT I made it I'm here. Never EVER again. Oh the kicker was he told me there is a 10% chance this would need to be repeated. Hahahahahahahahahahaha ya right NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!   

This I thought was going to be the last test. But once again I am WRONG!

Today 8/25 Got the "CALL" yet again. I have a carcinoma tumor in the left lung. AHHHHHHHH!!!!
My treatment has changed I will start Chemo asap. My first Chemo session will be on 9/2.  I will be scheduled for lung surgery asap and then will go back to finish chemo then the bi lateral mastectomy with reconstruction. When healed from all that a Hysterectomy. So when its all said and done I will be a bald, half lunged, postmenopausal woman with a great looking rack! :)  Sounds like a ton of fun huh? BRING IT!!!!!!

So since chemo is starting sooner than I had planned I thought I would try and make this loosing the hair process as FUN as possible. Any ideas? I thought about getting several different hair cuts and taking fun girly pics with lots of makeup. Wig Shopping? MMMMMM not something I thought I'd ever do but theres a first for everything. WOOOOO they are expensive. I'm gonna go check out a wig place in Algonquin tomorrow. My understanding is they have over 2000 wigs.    

I will be having a echocardiogram sometime over the next couple days, and will attend a chemo therapy teaching class where I will get my chemo schedule, prescriptions and details of my visits to the Kellogg Cancer Center.

So until next time, Love you ALL! Mmmmmmwah!

Saturday, August 21, 2010

Update!!

I have been struggling with who I am lately. Am I a mom? Wife? Friend? Sister? Daughter? What is my purpose? Should I be home taking care of my family? Should I be working?  Helping with different programs at school or coaching? Supporting and comforting friends? To be honest, right now I think what I have allowed to define me the most is this stupid cancer. I'm a cancer victim-fighter. When it comes right down to it that is what has defined me. It's my "get out of anything I don't want to do" card. It's my guilt-free reason to thrown my own pity party. It's what keeps me awake at night as I allow it to define me and my future. Frankly, it's getting OLD!  Dear Cancer, Leave me alone. I hate you. I hope you die. Sincerely ME!  

So on Thursday I had my port put in on my inner left arm. It was an out patient surgery. It wasn't to bad. I'm a little sore and having some trouble sleeping. But I'll take that.

Saturday 8/21/10   This morning I had a giving up moment. I owe getting through it to my wonderful husband. I had a bone scan scheduled for 8:30 am at Highland Park Hospital. I was to arrive 15 min prior. Which means I should have been leaving the house by 7:15am . I got up at 7 went to the restroom came back out and got right back into bed. I thought forget it. I'm done with this crap. It can wait for another day. I'm sooooooooo tired!!!! I'll just reschedule it. Well that didn't work Jesse made me get up. We got there at exactly 8:30am. I'm surprised I made it there alive Jesse drove like a mad man. When I had scheduled this the woman was very rude and not helpful at all. She said you need to be here at 8:30 and you have an arrival back time of 10:30. I'm thinking ok. I know its nuclear medicine but where are you sending me. An arrival back time????????? Jesse said to her: So its a two hour test? She snaps back at him NO I didn't say that. How rude! I have never done this before I didn't know what to expect and this girl wants to be a bitch. Whatever maybe she was having a bad day. We all are in titled to them. So when we got there it all made sense. They give you a injection of some radio active stuff but it takes 2 hrs to take affect in your body. So I was to come back at 10:30 for the scan. Jesse and I had 2 hrs to waste. So we just started driving around. WOW Highland Park is beautiful. We drove through the downtown area into this cute little residential area. I shouldn't say little the homes there seemed to be on steroids. They are absolutely gorgeous. Covered with crawling vines and flowers. We ended up at a dead end where there was a pretty beach/lake Michigan. We got out and walked a little and sat for a little while starring into Lake Michigan. Which was covered by a very heavy fog this morning. Then we had to go Jesse needed to use the bathroom badly. :)  Thanks to you Jesse (husband) this is now one more thing that is behind me. I should have the results on Tuesday.

Now if I can just make it through Monday. I am scheduled to have the Lung biopsy @ 10am in Highland Park. I'll let ya all know how it goes.    

Wednesday, August 18, 2010

Its become REAL!

Sooooooo alot has happened over the last few days. Monday I did my gene testing. That conversation made my head hurt. It was like a very deeeeeeeeeeeeeeeeep science class. I should have my results back in about 3 weeks. Yesterday I had the joy of drinking some really yummy stuff and having a CT of my abd & pelvis. I suggested that they find a way to add some vodka to it. They could make a Barium martini! MMMMMMMM LOL! Over the next five days I'm going to be tortured a bit.  My CT of the chest showed a 1 inch nodule/lesion on the left lung. They are not sure exactly what it is so I will be having it biopsied on Monday. OOOO so DON"T want to do that biopsy stuff again. They assure me they will make it comfortable for me. I'm thinking yea right,  before or after the big needle goes through my chest to my lungs. Tomorrow I will be having a out patient surgery to have my port placed so that it can be accessed for chemo. Give me a second... here come the tears.......................................................... Something about this stupid chemo stuff makes this all so hard and SO REAL! 
Saturday I will be taking a visit to nuclear medicine for a bone scan. Sounds like fun huh?
My insurance has decided they want to be jerks. They will not cover or approve the PET scan. They say its exploratory. They had also denied my CT of the Abd & chest. They say only if it were for a surgical purpose or if I was stage 5. BUT, my doctor was so kind to call those amazing insurance people and have a very nice and calm conversation with them and to my surprise they have kindly changed their minds about covering some of these tests. Isn't that so WONDERFUL! :)   Yeah ME!!!!  I get to have more tests.
The oncologist and surgeon have decided to switch some things up on me. They are thinking that I will do chemo first and then the surgery. And I would like to do it the other way around. I want this stuff out of me ASAP!!!
The talk of chemo has me in pure panic and sadness. I'm thinking I should go and get my hair cut and start looking into wigs. My hair is so much a part of who I am. I know its just hair but its easier said than done. I really really really feel for anyone who has had to experience this. Its a very emotional thing for me and it hasn't even happened yet. Just the thought process of it gets me :(

Yesterday I spent most of the day with my grandparents. It was a nice trip. She found it necessary to tell me about all the health issues shes had over the last 80 some years. She should of wrote a book about it. Oh wait she DID! She literally brought out this huge hard covered book and started reading it to me. I couldn't believe it. Not what I really wanted to hear about. Alls I could do was think about what else is in store for me.  Anyway she took the kids shopping and they had a blast with that.
Today was the first day of school for the kiddos. Christian is a freshman and my princess is in 4th grade. I can not believe how fast they grow up.

Jesse and I are trying to choose laughter over tears.
The other day when I had my gene testing done we were talking to the kids about what that could mean for them should I have a mutation of either the BRCA1 BRCA2 and or p53 gene. Mariana says wait so your telling me those comfy jeans I like to wear could be bad for me. AHHHHHHH LMAO!  I told her..Don't worry hun I'm an adult and I could barely understand it. I spent some time trying to explain the word GENE to her but she wasn't getting it and I wasn't doing a good job of making it understandable to a 9 yr old. She keeps asking me- Where on your body is your gene?
So I'm giving you all some homework. How do you explain genes to a 9 yr old?

Friday, August 13, 2010

We're LAUGHING!!!!!

So yesterday we had a lovely ride to Highland Park. I had my CT of the chest done and MRI. Both were painless and easy. Should have the results back sometime tomorrow. We brought the little man with us yesterday he was so good. He made us LAUGH!  After I was done it was about 2:00 and we all were hungry so we went to grab some lunch. I believe it was called the Tracks. It was a cute little sports bar each of the booths had a little tv. So we are being seated and Enrique says look mommy at the naked girls on tv. OH my gosh! I look up and girls volley ball is playing on the tv. Not quite naked but close enough. Our waiter found it to be hilarious as did we. :) I can ALWAYS use a LAUGH!
My insurance denied the PET scan they claim that it is considered to be exploratory. So instead I will have a bone scan and CT of the Abd & pelvis. The whole point of all these tests is just to make I don't have cancer anywhere else. I have a  fun and busy weekend ahead of me. Saturday family reunion and Lakemoor Fireworks - The BEST fireworks ever!!! Sunday is Island Lake corn fest. FREE CORN! Somewhere in between all that I need to go buy school supplies as school starts Wednesday. Nothing like the last minute :)
Monday I have my appointment with the Genetics Dr and Tues I will have my CT of the Abd & pelvis. Hopefully after that I won't need to do anything else and they will give me my surgery date. I'm sure most of you have already figured it out But Jesse and I have decided if we don't laugh about it we'll cry so............. LAUGH it is.
 Don't forget to LAUGH and have a great weekend!
 

Tuesday, August 10, 2010

Total freak out!

Hola!
If you haven't already heard here is my big news. I have Breast cancer.
I wanted to start this blog to keep everyone up to date on whats going on with my boob(s). LOL! Come on people laugh a little. Its the only way I'm gonna make it through this. Let me start with a little bit about how this all came about.

Several months ago I noticed I had what looked like to be a piece of dry skin on the end of my nipple on my right breast. Of course I didn't leave it alone I picked it. While doing this I was walking into the bathroom my elbow hit the wall making my finger nail go into my nipple. It was bleeding and didn't feel to great but I thought egh whatever it'll heal. Several months past and it hadn't healed. I tried everything band aids, ointment used for breast feeding, gauze, going braless for almost a week. NOTHING seemed to help. Several more months passed. One night my husband noticed a small lump. He asked me whats this as he poked at it. I about jumped out of my skin from pain. I didn't really feel anything til he pointed it out. So then it became something that I would constantly play with. My sore on the end of my nipple would get better and then worse. A couple days after my husband pointed out this small lump it had become huge and was very tender. So I made an appointment with my Obgyn to have a breast examination along with my yearly pap.
6/17/10 so I explained to the Dr what happened. She said it looked to her like maybe there was a infection at the surface. As far as the lump was concerned she didn't even acknowledge that she could feel it. She had her associate come in and take a look at it. He too agreed that I should take some antibiotics as it probably was infected. He told me as far as the lump as you get older the tissue could become more hard I guess. I don't even know what the hell he really said alls I got out of it was it was nothing to be worried about. I got the script for the antibiotics. I was going camping up in Door County that weekend. They suggested that I wait til I got back to take it as it could cause nausea. So when I got back I started my meds that I would take for 4 wks. Something told me stay on this get a mammogram, get a second opinion. So I did. On 7/8/10 I had an appointment with a much smarter Dr. He ordered me a mammo, mri, amd lots of blood work. The soonest they could get me in for the mammo was 7/22/10.

7/22/10 had my first mammogram. It wasn't as bad as I had imagined. The tech was very nice, friendly an informative. After she was done she had me wait for the radiologist to read my results. She came to say she needed to take a couple more. The radiologist thought it would be a good idea that I have a ultrasound right away. So the mammo showed two spots that were questionable and the ultrasound showed five. As i was leaving the tech hands me a pink single stem rose. She says to me this doesn't mean that you do or don't have cancer its just a thank you and good luck. G thanks!!!!! :)  So my next step was a ultrasound guided biopsy.

7/26/10 I meet with a surgeon to discuss my biopsy. He performed the one biopsy at the tip of my nipple. And recommended I have the others done at the hospital with the radiologist because there were multiple spots that needed to be biopsied.

7/28/10 I had the ultrasound guided biopsy. I was not a happy camper. It took over an hour they took 9 biopsies and put in two markers so I was stuck with a needle 11 times mot including the needle sticks to numb the areas. This was so NOT on my to do list. I walked out of there looking like my right breast was a DD. I was to go home rest and ice my right breast for 20min every 60 min.

Now the worst part waiting for the results . WAITING WAITING WAITING WAITING!!!!!!!

The biopsy was done on Wed so they thought I would hear something by Friday but most likely not til Monday.

7/29/10 So all day long I was getting check up phone calls from the hospital and Dr's. They wanted to make sure I wasn't having any signs of infection, that my pain was tolerable and that I didn't have a ton of bruising and no bleeding. At approximately 3:35pm I got "THE CALL". Dr.Schwab - surgeon who did the first biopsy called to tell me that all the biopsies that were taken came back to be cancerous. Alls I could say was ok, ok, ok, ok. Of course I was shocked. I wasn't expecting to know as it was only Thursday and I was told I wouldn't know anything til most likely Monday. So in just the few minutes I spent on the phone with the doctor my whole life and world seemed to be flipped upside down. Alls I could think is I'm 30 this can't be.  I instantly called my husband. The tears came and I was emotionally a mess. Might I add at this awful moment I was HOT mess!!! :)
I couldn't even get the words out to tell him. He was with a customer and quietly said Hun I'm sorry but I have to call you back. I found myself shaking walking back and fourth. The kids were all home and I didn't want them to see me like this. It took me about 20 min to get myself under control. The second I had convinced my self that I could do this Jesse (my husband) called back. He was in hysterics. It was horrible I couldn't even share this awful moment with the one person I wanted to share it with most.

7/30/10 I had an appointment the next morning to go over my "options". Options are great except in this case. Options = Decisions. So the Doctor explains to Jesse and I that I have what is most likely a Stage 2 Infilitrating ductal carcinoma, poorly differentiated. In otherwords Aggresive cancer in all the areas that were biopsied. I also have what they call Pagets disease. So basically my entire right breast is garbage.
   Paget’s disease of the breast is an eczema-like change in the skin of the nipple, and 9 out of 10 women who have it have an underlying breast cancer. The underlying breast cancer may be an invasive breast cancer or ductal carcinoma. Paget’s disease affects about 1–2 out of every 100 women with breast cancer. It is most common in women in their 50s, but can occur at a younger or older age. One of the signs/symptoms is usually a sore affecting the nipple that doesn't go away. UGH Hello HUGE RED FLAG!!!! Why did my obgyn not know about this? So anyway he goes on to talk to me about surgery a Mastectomy. I am not a canidate for a lumpectomy my chances for reoccurance would be high. So he shares with us the details of the surgery. He then starts to talk to us about Chemotherapy. That was it I lost it. I sat there completely speechless. Alls I could think is you want to remove my boobs and know your telling me I'm going to loose all my hair. Well shit why don't you just take my freaking crotch too!  Sorry! I had to share that with you. I'm mean come on how am I suppose to feel at all like a woman. I finally have grown to like who I am and what I look like and now this. So so so frustrating. The rest of the conversation for me was a blur. The word Chemotherapy was what but me over the top. There are several options for reconstruction.
SOOOOOO my next step was meeting with a plastic surgeon, oncologist and genetics specialist.

8/2/10 Today was a absolute waste of my time. I was suppose to have a doctor appt @ 9:30 with the plastic surgeon. Jesse and I drove all the way to Kenilworth to be told your appt is at 9:30 PM.
PM What?????   So we hurry back to go over to NIMC for my MRI @ 12. We got there a little early so I went and got copies of my reports. Got my slides from pathology and my films from my mammo. So its finally time. I get back there and the girl asks me the first day of my last period. 6/28 I tell her. Apparently this is a problem. The mri is very sensitive and will pick up hormone activity so its best if you are on day 2 or 3 of your cycle at that point hormones will drop drastically. So anyway I still had my appointment at 9:30 pm to go to. Jesse and I left a 8 pm in hopes we would get there a little early and people watch. :) At 8:45 we are almost there and Jesse notices he has a missed call. Its the Doctors office cancelling my appointment because the Dr had a ER. Oh the poor girl that had the duty of calling me got an ear full. I was PISSED!!!! I just drove here for the second time today for nothing! I was glad this day was over.

8/3/10 My appointment that I knew was going to be the hardest for me. Dr. Dragon - oncologist
He was very nice and extremely informative. He went over the details with me and different chemotherapy regimens. At this point seeing him is a little early in the process. I will need to see him after surgey for Chemo. Not sure if I will be doing this treatment. I am considering an alternative treatment in place of the chemo. I would have no hair loss, no nauseau or sickness. Something I still need to think about. Something in me says DON'T do the chemo.

8/4/10 Appointment with Dr. Fenner - plastic surgeon. He will be doing my reconstruction. There are basically 4 different options for my reconstruction. One satge implants, two stage Tissue expanders, DIEP/Muscle sapring Free TRAM flap, Latissimus Dorsi Flap. I'm sure your all thinking hugh? What does that all mean. I could explain it to you but it would take me forever so I will just ask that if your really curious you can look it up on line. Some of the pictures can look pretty scary beware.

8/9/10 The appointment I've been waiting for.  Dr. Winchester also known as Mr. Popular everybody wants to have their surgery done by him. I am suprised I was able to get in as soon as I did. We talked about the entire process from the removal to reconstruction. There are several more tests he is recommending I do prior to giving me my surgery date. I need an MRI of the left breast, CT of chest, PET scan and genetic testing. All of my doctors are thinking I have a mutation to a gene. I have no family history of breast cancer and I'm 30. So I have scheduled the MRI and CT for 8/12. I also will have the genetic testing done on 8/16.
So unitl then I will keep busy with coaching cheerleading, enjoying the rest of summer and getting the kids ready to go back to school. I will keep all of you updated. So far I've only had two break down emotional days. I did have a really bad day on Sunday. I was yelling at anyone who got in my way I was just pissed at the world. Its time to sit down with the kids and let them know whats going on. I need help around here and they are gonna have to step it up. I can't do everything. Its driving me to be angry and frustrated.