Thursday, May 30, 2013

A very real FIGHT...

UGH. . .F.R.U.S.T.R.A.T.I.O.N. . .
I am so frustrated today.  I woke up with the expectations of seeing my NEW Radiation Oncologist and getting my radiation "mapping" done so I can start radiation treatment.  I saw her yesterday for a consultation and was suppose to come back today for the mapping portion of the process.  That went out the door early this morning when Dr. Grade, this is pronounced GRA-DE...(The new Rad/Onc) called to tell me after talking my case over with Dr. Schulmbrecht (The new GYN/ONC) they decided based off the tumor size in my pelvis we are better to hold off on radiation for now.  To see if we can get a few rounds of chemotherapy in to shrink the tumors before radiation is done.
WHAT'S that mean?
NO RADIATION will be done right now...or until further notice.  The risk and complications are too great and out weigh the benefits.  Since I have had radiation before, there is very limited amounts of radiation I can get.  My bladder and rectum are already compromised, no need to compromise them further.  By holding off on radiation and pushing forward with chemotherapy the hopes are we will SHRINK the tumors not just in my pelvis but all over my body.  Treat the disease as a WHOLE, not just the disease in my pelvis.  Once the tumors SHRINK, we then can do radiation, but have a more precise treatment plan and radiate JUST the tumor and not my bladder and rectum. 
The RESULTS are IN...
I had blood work drawn today.  I haven't had blood drawn in about a week.  The last time I got my labs drawn my platelets were about 147.  I was worried they were steadily decreasing.  I FINALLY got the results and my platelets are holding steady at 150!!!! This is AWESOME news!!!  This is even up a little from last week! :)
OUR course of ACTION...
Since my platelets are NORMAL, we are going to start chemotherapy...AGAIN.  I will start this next Wednesday June 5th, 2013.  I am going to be doing a chemotherapy called CARBOPLATIN mixed with TAXOL.  This will be my first round and then after this we will check to see what happens with my platelets.  Carboplatin (carbo for short) takes about 3 hours to infuse.  Taxol will take about an hour.  I will have pre-meds that will take about an hour as well.  So over all it will be a full day infusion.  If my platelets hold steady, we will do another round.  If not we will work up a new plan. 
I am seeing yet another new doctor tomorrow.  Dr. Kludepplberg is a MED/ONC doctor.  He will take over my care for my blood disorder, the ITP. I see him tomorrow and we will go from there.
My appointment with him is at 1pm tomorrow.  I swear MD ANDERSON only does appointments at 1pm.  Every appointment I have had has been at 1pm.  I am not sure at this point if they have morning appointments. Ha ha I hope he will be able to get me off these damn steroids, but I guess I can't be TOO upset about it considering my platelets are holding at normal levels. 
I know I just changed care from Arizona Oncology to MD Anderson just last week, things are actually happening pretty quickly.  I just feel like it should be happening even quicker. 
I feel like I keep getting pushed to the side, not that MD ANDERSON is pushing me to the side they are helping me, I just am frustrated. I want so badly for this cancer to be gone.  I am trying EVERYTHING...I called T-Gen and was told that since the consultations are usually the only thing that is covered by insurance NOT the actual treatment or trail that DR. BORST office didn't go further with processing the referral.  They also NEVER told me this this whole time I have been waiting for them to get authorization!!  Now I am having to talk to Dr. Schulmbrecht and have his office process it.  Which upsets me.  It was about a week ago that Borst's office was suppose to process it and didn't...that puts us a week farther behind.
I am now having to prepare myself for chemo....................AGAIN
I am not sure how I did it the first time, and I am STILL not sure how to do it this time.  Even having been through this process before I am still not sure what to do or expect. Side effects for this treatment might be different than last time, however it's safe to say chemo is chemo.  These medications might effect my body differently than the last chemo drugs did.  My HAIR...I might lose my hair...AGAIN.  It's so irritating!
DO you know how hard it is to have to go through this ONE time, let alone TWO times. 
It's for the birds really.
Having cancer NEVER gets easier.  It's always SOMETHING. Like having cancer is ever EASY, but the drug induced ITP doesn't help my situation AT ALL.  This time around is more scary.  I have the ITP to worry about.  Before I was fighting the cancer that didn't really exist since my scans were all clear...this time around I have cancer in both my lungs, right adrenal and four tumors in my pelvis, it's a VERY REAL FIGHT.
You can see where my frustrations come into play.
I am spent for tonight.
My brain is FRIED and I can't even keep things straight.
Tomorrow is another day!

Thursday, May 23, 2013


UPDATE...update...UPDATE y'all
I have a LOT to update you on.  I told you it was a week for the books.  Put your reading pants on and sit back and get comfortable. 
You wouldn't be here reading this if you weren't interested....right?
First things FIRST...
I got my lung biopsy results back, it was POSITIVE for metastatic disease.  This means the FUNK in my lungs IS in fact this BITCH.  Nothing else really is important other than this changes the game...A LOT. 
This dirty BITCH is fighting DIRTY.
I will fight DIRTIER.
Secondly, I saw Dr. Borst today.  My appointment was at 11:45am today and I got there at 11:38am and was waiting for labs before I was called back to see Borst himself.  I got my labs and was ushered to a room to wait for Borst.  UGH I am sure it didn't help I had a CHIP on my shoulder BEFORE even going in for my appointment.  Ashley, Mom and I were all sitting in the room with Kayla his MA when Ash got a text from Colleen (the babysitter) and she had read it to me.  The text wasn't ANYTHING bad, but just saying something along the lines of "they still made you wait, you think they would have learned their lesson after the last time when she walked out"
Kayla says "is there a problem with this appointment? I think we are doing pretty well" To which Ash responds "I was reading the text to her" as she points to me.  MA responds "I would appreciate it if you would hold your conversation about our office until after I leave the room, I am sitting RIGHT here" Ash says "that's fine we will talk about you after you leave the room".
First of all bitch don't even get me started, I will talk about WHATEVER I want to, if it weren't for ME, you wouldn't have a job!  That's OK...ONE more reason for me to SWITCH my care.
Borst finally comes in...
 (let me just remind you we had been in the office for over an hour by this time.)
To catch you up to speed, I was asked at Dr. Zaky's office on Monday to bring my SIMS CD to Borst so he could VIEW it.  Also since I went ahead and had my lung biopsy done WITHOUT his "approval" this appointment was SUPPOSE to be him giving me the APPROVAL and giving me clinical trial information. 
OK....back to him coming into the office. He for one DOESN'T even ask for the SIMS CD.  Which why would that surprise me?  Really, why I am still shocked?  He didn't even talk about my lung biopsy.  I didn't bring it up either.  Why would I?  I already had the biopsy, and I already got my results.  He did ask that I get a physical.  To which I said sorry pal I have had TWO this week and it's ONLY Thursday, NOT happening.  He didn't really know what to say after I said no.  Apparently not many patients say no?
He asked if I was able to get into BANNER MD ANDERSON...I said yes, they didn't really give me much more information than I already had.  He said he was sorry about that.  He suggested a clinical trial "T-Gen".  To learn more about T-Gen visit:: He is going to see what he can do to get me in to see them.  I have already put a phone call into the folks at T-Gen to see if they take my insurance for one and two to see if they can tell me since I have ITP and have done IVIG if that will exclude me from the trial.  I am waiting a return phone call.  IF I can't get in to see them he is going to consult with Bibb and come up with a chemo treatment plan.  Which should be tricky for him considering I have ITP and no matter what chemo I get it will destroy the platelets even more.  I am in a STICKY situation here.
That sums up my appointment with him.  Can you tell it was a rather quick appointment.  I think from the time he walked in till he left was maybe a WHOPPING 10 minutes.  WASTE of my TIME, and GAS driving ACROSS town.  I knew this was going to happen. 
Let me talk to you about MY SITUATION...I have ACTIVE bitch in my body.  In my pelvis, lungs and right adrenal. This has been confirmed.  It's spreading like wild fire and nobody seems to be able to do anything about it. 
My first BOUT with treatment caused drug induced ITP.  Which means in short that I can't get chemotherapy due to the fact that my body is already ATTACKING itself and chemo could be fatal.  
AM able to get radiation. HOWEVER, they can't radiate my ENTIRE body, and since I have at least 10 tumors in my body what gets RADIATION?  They want to focus radiation on just the pelvis.  I have four tumors there.  One in the adrenal and at least 5 in the lungs. 
BUT...they can't even tell me if the radiation will work.  Since I had radiation the last time, my "parts" are just about maxed out for radiation. My rectum can get up to 65 gray.  Which is the strength of radiation to this specific area.  Last radiation treatment I got 50 gray. 
That means I can only get 15 gray to the rectum before more SERIOUS side effects happen. Same goes for my bladder.  My bladder can get up to 75 gray and received 50 last time. 
Here's the TRICKY part...
Remember how I told you the tumors in my pelvic were putting pressure on my rectum and bladder but NOT invading those spaces?  Well this means no matter what she will have to radiation some portion of my rectum and bladder in order to radiate the whole tumor. 
No physicians are able to tell me if I can get IVIG and chemo the same time.  None of my physicians have ever treated a patient with chemo and IVIG at the same time. 
I have asked Dr. Borst, which just told me to ask Bibb.  Bibb says he hasn't done it before and doesn't know how it will work but will consult with Bosrt.  (that's clearly going to go far) I asked my new physician Dr. Schulmbrecht at BANNER MD ANDERSON, as he said the same thing...he has never done it before so he isn't sure.
Like I said I saw BANNER MD ANDERSON.  I saw a Dr. Matthew Schulmbrecht.  He is YOUNG...which doesn't mean anything.  Like I've said before he comes HIGHLY recommended by a physician I know of at MD ANDERSON in HUSTON. Dr. Schulmbrecht has even studied small cell in the cervix before and has much knowledge about small cell.  I WILL be changing my care over to him.  I know I fought tooth and nail and HATED every thing about going to BANNER MD ANDERSON, but in the end I think giving my situation, given that fact that everyone else has given up on me this is where I need to be.  No matter how much I hate it.  I need to be with a physician that has experience in treating SMALL CELL
While I was seeing Dr. Schulmbrecht he did a physical and a total work up.  We spent some time with him going over my options.  He was totally honest with me.  I like that about him. NO beating around any bushes and NO sugar coating it.  My kinda physician. :)  He told me he felt I was positive for metastatic disease.  This was before I got my results back on my lungs.  Which every physician I have seen has told me this.  He said small cell is not curable.  BUT I can still live a long healthy life WITH small cell I just need to the right care. 
It's aggressive.  NO SHIT
He is going to present my case to the tumor board tomorrow (FRIDAY). 
The tumor board is a board of Oncologist that meet every Friday to review cases that are UNIQUE, and RARE.  The whole team then comes up with a plan or course of action that would best benefit the patient.  He will call me tomorrow and let me know what the plan is.
He is also going to see if since I have my SIMS CD that I can get that in the hands of his Radiation Oncologist and see if she can make a plan for me based of the SIMS CD Zaky did. 
I might be able to get started with radiation with BANNER MD ANDERSON without having to do my SIMS all over again.  Say your prayers this happens as it will save us WEEKS!!! If for some reason she can't, then I will have to schedule a consult with her, then redo the mapping and then she will have to come up with a plan of treatment and that could take WEEKS, weeks I am not willing to WASTE
In the mean time, I have a follow up appointment tomorrow with Dr. Bohan, she is my lung doctor. She is going to give me the results I already have on my lung biopsy.  I think I will be cancelling this appointment.  I kept it on since no physician has actually GIVEN me my results, but since Borst called me with this tonight I will cancel that appointment.
That's at 10am tomorrow.  We cancelled the appointment we had at noon with the alternative treatment center in Scottsdale, they don't take insurance and my day tomorrow is going to be by far the most hectic.  I don't have time for non insurance taking offices. Nor the money.
I see the Cyber-Knife Radiation office at 2pm and they DO take my insurance! Ha! When I talked to Dr. Schulmbrecht I asked him about this type of radiation and he said it sounds cool, but really the radiation machines they have at BANNER MD ANDERSON are just as precise.  He suggested I go and talk to them and get a second opinion on radiation, what can it hurt?? 
Like I had just mentioned Borst called me tonight with my lung biopsy results. 
He said Bibb wants to see me tomorrow.  So that will be added on to my day SOMETIME tomorrow...not sure when...but he will FIT me in.  He wants to try putting me on something called Rituxan.  This is suppose to help with my platelets...?  We will see.  My platelets were 177, remember that day?  I was so excited they were 177.  Well every time I get labs, my platelets are going down, down, and down.  Last Friday 177, Tuesday this week 157 and today 147.  They are steadily decreasing. THIS ISN'T A GOOD SIGN.  Means the ITP is working over time, and the IVIG will be needed more often, and finally if in a weeks time my body can destroy 30,000 platelets what is it capable of doing with CHEMO in my system?  SCARY thought!
I will meet with Bibb tomorrow and see what he has come up with. Say your prayers he has COME UP WITH SOMETHING!
To top it all off I have to take Sophia back in for her post op surgery appointment.  That's at 440pm tomorrow.  I am GLAD Monday is a HOLIDAY and everyone is CLOSED! Ha ha I NEED the weekend to recover from the week!
I am scheduled for Tuesday to start radiation with Zaky.  I will keep that appointment until I speak with Schulmbrecht and see what he can do for me.  I pray he can do something for me!
I called Rubin's office today and let them know my lung results.  His office is what a doctors office SHOULD be.  I told Andrea (one of his office girls) what my results were and that I needed to be seen.  She told me his first available was 6/7/13 @ 930am.  I took it of course. 
However, she told me I will give him the message and if we have to move some other patients around to get you in sooner we can.  Rubin was out of the office today so she will talk it over with him tomorrow and call me with a new appointment time, she knew he would want me in sooner. PLUS they are NEVER behind schedule! :) I know Rubin will be the one to cure me of this bitch. 
Here's do moving mountains!

Tuesday, May 21, 2013


My BMBX results are IN!!!

...and were NEGATIVE!! Which means no bone cancer for this girl!!! :) 

So truly I have ITP, drug induced. So the next steps are to keep my platelets in normal ranges so I can get treatment. :) That will be done by IVIG and steroids. 

Should have my lung biopsy results back this week and I have HIGH hopes they will be NEGATIVE too!! :) 


Monday, May 20, 2013

....a week for the BOOKS...

Its that time again, time for blogging! :)
Today (05.20.13) I had an appointment with Dr. Zaky. 
If you remember her from way back in September-November, she was my radiation oncologist.  Which means she is my radiation doctor.  I haven't seen here since March 6th. 
LOT has happened and a LOT has changed since I last saw her. 
My appointment today was at 8am. 
We (Scott, Mom, Ashley, Grammy and myself) met with Dr. Zaky.  We talked about radiation and really just had a consultation type appointment. Got all our questions answered.   
My "team" of doctors all have suggested I get radiation done to my pelvis...AGAIN. As I have active tumor in this area.  My scans all came back showing tumor present in the "vaginal cuff" area. 
I had scans done in Chicago when I was up there and it showed tumor but we didn't get a copy of the CD so we weren't sure what we were looking at and just going off the CT report. 
After we all met with Dr. Zaky, we did what they call is SIMS testing. 
Let me explain to you what SIMS testing is...SIMS testing is when they put you in a CT machine, and gives you small bowl contrast to drink.  They get you in a uncomfortable position on the table and send you through a series of scans.  Once this is done, the scans show a few things. 
1) IF there is tumor present
2)WHERE the tumor is
3) HOW big the tumor is
4) WHAT organs/structures are effected
After my scans were all done, we met with Dr. Zaky again and we LOOKED at the scans. 
This is what we saw...ONE: there is active tumor in my pelvis.  Which we knew.  BUT, there is about 4 tumors in this small area that all seem to be connected to each other.  TWO: we saw specifically WHERE the tumor is.  Which is in the space between my vagina, rectum and bladder.  This is just "empty space" since all my lady parts have been removed.  Currently the tumors are growing INTO my vagina.  Putting pressure on my bladder AND rectum, BUT not invading those spaces.  Which is the best news we could ask for given the current situation. 
The tumor when I was last seen in March was about 1.5cm.  It is now grown and is taking up about 1/3rd of my vaginal space.  Which is the BAD news.  Since the tumor has developed into tumors, and have grown from 1.5cm to the mass it is now radiation will be very tricky.  We will have much more tissue to radiate for one, and two that means side effects are higher and three my bladder and rectum are now effected by MORE radiation. 
GOOD news is the tumors ARE NOT invading the bladder or rectum.  They are just putting pressure on those areas.  The reason this is good news is we can do radiation to stop the growth into those areas, even possibly SHRINK the tumors.  If the tumor continues to grow and invades either of these spaces, then we are looking at high risk for infections.  What COULD happen is the tumor can build a "tunnel" of sorts from the bladder and or rectum or both and eventually causing my bladder, rectum or both to send urine, or stool down this tunnel and out the vagina.  Which causes infections, and the qualify of life for the patient is then decreased. 
Surgery sometimes doesn't always work to correct this.  We do NOT want this to happen.
So the sooner we get radiation going the better. 
As of right now I am scheduled to start radiation on Tuesday March 28th, 2013 at 1pm.  I don't know yet, how long each treatment will be, or even how long treatment will last.  Once my treatment plan is made (which will be this week) I will have the answers to those questions. 
I am going to see another radiation oncologist on Friday.  This radiation oncologist does "cyber-knife radiation" which is still radiation, but it is more pin pointed and precise.  Which might decrease the effects of radiation on my bladder or rectum.  Which is what we want...we just don't know if this type of radiation will benefit MY type of cancer.  Still worth the trip to Scottsdale to find out.

I have my LUNG BIOPSY scheduled for tomorrow at Banner Desert at 8:30am.  I had blood work done today and my orders, and authorizations are all in and I'm ready to go! :) 
I check in at 8:30am and my procedure is at 10:30am.  I will have results back on what is going on in my lungs in about 7 days from tomorrow. 
Then we will know just how dirty this cancer is playing. 

Wednesday I have an appointment with BANNER MD ANDERSON.  This is my consultation and I will be meeting with Dr. Matthew Schlumbrecht, MD.  He comes HIGHLY recommended by Dr. F from MD ANDERSON in HUSTON.  I have been in correspondence with Dr. F for a few weeks now.  I was going to make the trip to HUSTON to see Dr. F, as he sees many of my sisters (SCCC/LCCC Sisters) but once I talked to him he suggested I seek treatment here in Arizona and that I see DR. SCHLUMBRECHT.  Since Dr. Borst is sending me to BANNER MD ANDERSON anyways I will see who comes highly recommended.  I hope he can shed some light on the current situation and help us out with our course of action.  Even better if he is here in Arizona. STILL NOT HAPPY that I am going to BANNER MD ANDERSON

Thursday I will see Dr. Borst at 11:45am.  This should be an interesting appointment to say the least.  I have a few choice words for this physician and I am irritated with this office.  So Thursday will be fun for me.  Ha ha! :) This is when he is suppose to let me know if I can have the lung biopsy done or not and give me more information about clinical trials.  Which is why he is sending me to BANNER MD ANDERSON.  So the whole reason he wants me to come to his office will already be taken care of BEFORE I even make it to see him for him to tell me to do all this.  WHATEVER...

Friday...Oh Friday.  I will see the Cyber-Knife Radiation Oncologists.  This appointment is at 2pm.  Scott has me scheduled to see some other alternative treatment center at noon this day.  Its a week for appointments! Grammy says "how do you keep it all straight" I have two calendars and I coordinate them both one on my phone (I always have it one me) and my daily planner at home (for when I am at home).  Mom made the comment today "you have made more phone calls today in one day than I make all year" haha story of my life...If I don't stay on top of my medical care then who else will?

I will keep you all posted on what comes of these appointments, so look forward to more blogging this week or next! :) Things are happening, and moving ONLY took 3 months to light fires under some asses...but I hope we are well on our way to a cure! :)


Friday, May 17, 2013


HELLO one and ALL!!! :)
I know it's been awhile since I last that I am sorry, but not! ha ha
I have been living life and a busy one at that.  It's been full of the usual doctor appointments and labs and Vitamin C infusions and Biopsies and the list goes on. 
Today (05.17.13) I had my follow up with Dr. Bibb.  I can't tell you how much I love this doctor.  I could only wish he was a gyn/onc!!!  He is my med/onc (blood doctor) and he is just fantastic.  You know you have a good doctor when he walks into the room high fiving you (for your platelet count) and giving out free hugs! :)  It never fails when I see him he gives me at least two hugs before he is off and hugging the next patient.  I had labs drawn today at his office to see my WBC is 8.6! That's NORMAL!!! WHOOP WHOOP!!! My platelets are 177, that's ABOVE NORMAL!!!! Can you believe it?  177!!!  It seems the IVIG and the steroids have WORKED!!! You read right, the IVIG and steroids are WORKING!!!
He has confirmed in fact I do have ITP. We were waiting on the BMBX biopsy before we could confirm it to be true.  We have been decreasing my steroids for the past few weeks.  He has lowered them again to 20mg. I will start that decrease tomorrow.  I will more than likely be kept on steroids at 20mg for awhile, to see if my platelets will still hold strong at normal levels.  I will need to do maintenance IVIG to keep at normal levels.  This DOESN'T make me happy, but whatever.  He has suggested I go forward with the lung biopsy.  I didn't want to do this after seeing the CTCA physicians.  Since my platelets are 177 (I still can't get over this) now is the time to do any biopsy.  As he explained it to me, since nobody has done a biopsy we still don't know what is going on in my lungs.  As the CTCA physicians tell me based on the SIZE of the nodules in my lungs it is metastatic disease. 
HOWEVER, Dr. Bibb has valid points.  He says if they don't have a pathology stating metastatic disease, they can't prove anything.  With my platelets being so FUNKY and NEVER doing what we WANT them to do, why would I start chemo to treat my whole body when the cancer might not be everywhere.  My body is destroying the platelets, why give me chemo to destroy more platelets if the cancer hasn't metastasized?  He was going to speak with Dr. Borst and get things in place for a lung bx early next week. most of you know how I can be I took it into my own hands and I called my pulmologist and let her know the situation.  She confirmed to go forward with the lung bx and even submitted a new order, and my recent labs.  I was speaking with Michele Dr. Borst's PA and she tells me "there are many steps that need to be taken before we can just order the lung bx.  I need to talk to Dr. Borst and he needs to approve it and then we have to call your pulmologist and get her to order it, then it has to be approved by insurance, you will need to then get interventional radiology to approve it and then hospital will need to schedule it and then they will call you" I let her know I already talked to my pulmologist and she approved it and sent in new orders with recent labs, I already had an authorization on file with my insurance and I had already put in a call to the hospital to get it scheduled but their computers were down.  So I will schedule it ASAP when the computers are back up.  She responded with "I will still need to talk to the boss man" meaning Borst.  I said "OK whatever" and hung up.  If I have an order on file and my pulmologist is approving me to have it done, then no matter what "the boss man" says I am having the lung bx done!!!  Well she calls me back a few minutes later and says "I talked to Borst and he said he would like you to come in on Monday at 1130am so I can do an exam and then we can get things moving for the lung bx."  I asked her why I needed to come in for a vaginal exam when we are talking about a LUNG vagina isn't going to tell her anything about my lungs" she got really quiet and said "he just wanted you to come in for an exam" I said "it's not necessary and I have too many appointments already on Monday"
PLUS I have an appointment scheduled already WITH BORST HIMSELF for Thursday.  So she said to keep it on Thursday but they can't order anything until I see him.  Well since he isn't ORDERING anything and my pulmologist is...I will schedule the lung bx for Tuesday! :) I know how to get around this little system she seems to THINK she has. 
So I have taken my care and put it back in the proper hands...MINE!
I have been feeling so out of control of my own life and medical decisions lately it's not even funny.  These little decisions made me feel so POWERFUL.  I know it seems small to most of you, but for me it's huge!  I can't remember when the last time I felt IN CONTROL of ANYTHING...actually yes I do that was LAST APRIL, before I was diagnosed.  Back when life was NORMAL, when my life didn't consist of doctors appointments, labs, vitamin c infusions, and biopsies! Back when my biggest concern was if I was going to eat PIZZA for dinner or a CHEESEBURGER! It's so frustrating and I have talked to SO many of my SCCC/LCCC sisters and that's the main COMPLAINT every one of us has...feeling out of control and FRUSTRATED
Between Scott and I we have researched every possible solution.  I have doctors looking at my medical records in MEXICO, BEVERLY HILLS and even HUSTON.  I am now being sent AGAINST MY WILL and by Borst to BANNER MD ANDERSON.  It seems he doesn't know what to do with me.  He thinks BANNER MD ANDERSON can help me.  I am not happy with this decision as I have been fighting against going to BANNER MD ANDERSON since the day I was diagnosed.  I haven't heard ANYTHING good about them, and this is MY LIFE we are talking about, not something I am willing to just put in any ones hands.  I HATE so much that this is where I am being sent.  I HATE that NOBODY can figure ME out.  I remember when I was first diagnosed my PCP at the time told me "you are going to end up being a clinical trial"
Here I am being sent to clinical trials cuz they "just don't know" that's BULLSHIT! Since I am being sent to MD Anderson, I took it upon myself to find out the best doctor to see...I contacted a specialist in Huston at MD ANDERSON and he gave the the best point of contact here in Arizona.  I have already set in motion actions at BANNER MD ANDERSON.
I have been reading books and doing my research and I have changed my eating habits and my lifestyle and I take supplements three times a day and I am DOING all the stuff a "cancer patient" should do and you are telling me "we just don't know"! My med/onc today tells me "if it has metastasized to the lungs we are in a whole new game of baseball here, we are talking INCURABLE" To which I told him "INCURABLE" isn't even a word in my vocabulary.  I am sorry but I don't know what that means.  I WILL be cured one way or the other no matter if it has metastasized to my lungs or not.  If you can't figure it out I will find someone that can.  I would appreciate it if you didn't use words like "INCURABLE".  That was the end of that.
So I left there today feeling pretty empowered.  It's a feeling I would like to hold on to for as long as possible.  I am just afraid with this diagnosis those feelings don't last long typically.  I know the feeling of being lost and confused will set in sooner than I would like.  It's just a day in the life of cancer diagnosis. 
So for now I am holding on, fighting and staying as positive as I can.  I am treading water and I think barley keeping my head above water, but the good news is...I am still treading water and my head is STILL above water.  :) 

Thursday, May 9, 2013


It's SUPERHERO THURSDAY here in Arizona. I am not sure if I qualify as a real "SUPERHERO" but I sure do feel like one today...I am being pulled in so many directions I don't know which way is up. 
I returned from CTCA and THOUGHT I had all my questions answered and a plan in place for moving forward with my treatment.  HOWEVER, as it turns out that doesn't seem to be the case. 
As I was in the infusion center at Arizona Oncology this week getting my IVIG, Michele Dr. Borst's PA approaches me and wanted to know how things went in Chicago. 
(We have been texting back and forth since I got home.)
I let her know last Thursday 05.02.13 what the treatment plan was and that Dr. Williams from CTCA would be calling either her or Dr. Borst to touch base. 
After seeing her on Tuesday and they still hadn't touched base, I was beginning to wonder if this "co-management health care" was for me.  I called CTCA to get my records faxed to Michele so they would have them for my appointment TODAY.  Well after many phone calls and long hold times, the records were finally sent and received late last night.  Dr. Williams FINALLY called Borst.  This was also after Michele called and left THREE message for Dr. Williams, and I called twice.  So things were moving along........OR SO I THOUGHT!! :(
I had an appointment with Dr. Borst today at 12:30pm.  I show up and sign in, only to sit in the waiting room for half an hour.  I finally get called back to a room, to only have to wait an addition HALF HOUR.  I was also scheduled to see Dr. Rubin my Naturopath at 2:30pm in Scottsdale.  I told Scott "let's go, we are leaving".  As we are on our way out of the office his MA comes chasing after me and says "are you leaving?" I look at her with this dumb look on my face and say "UH YES, I have an appointment at 2:30pm in Scottsdale I can't wait here all day." She looks at me and says "well Dr. Borst is ready to see you now."  I said "Well he will have to call me to reschedule, I can't wait around all day I don't have time to see him now."  She was all huffy and says "ooookkkkaaayy" and walks off.  Scott was so worried they would be mad at me. My response: I DON'T GIVE A SHIT IF THEY ARE MAD...I AM MAD!!!  My time is just a precious as HIS!!!
So I left and made it ON-TIME to see Dr. Rubin.  I JUST ABSOLUTELY LOVE DR. RUBIN...and I can't thank Marsha Larson enough for referring me to him.  I'll get into that in a minute...
I don't know and probably won't know what the plan is with Dr. Borst and his crew, but for right now I am so close to firing them it's not even funny.  The doctor is ONLY as good as his office staff and right now his office staff SUCKS A BIG FAT ONE! While I was in the infusion center on Tuesday talking to Michele we were briefly talking about CTCA and the plan.  I let her know that they wanted to put me on an oral chemo called Temodar.  She got this dirty look on her face and says "why would they do that, you don't have a brain tumor and that's what that medication is for" I said "They have used it before with small cell and small cell is small cell no matter where it's at in the body and this medication and reacted to it well" she just kept batting down all my answers.  I was getting frustrated and annoyed.  So now at this point I am not sure what to do. Who to listen to or where to go from here.  I was suppose to get all my questions answered TODAY when I saw Borst, but since that didn't happen I left feeling hopeless. 
I headed to see Dr. Rubin and not really feeling it...and frankly dreading going to see him.  This is the first appointment I have had with Dr. Rubin without Scott with me and I think I had some nervousness over that too.  Well I got to Dr. Rubin's office and they are just so friendly and personable and just AWESOME.  I meet with Rubin and first thing he says is "HOW WAS CTCA? TELL ME ALL ABOUT IT!!!" I tell him all about it and my labs, scans, the progression of my disease, what just happened at Borst's office and how frustrated I am and I don't know who to believe and what to do.  I was feeling hopeless.  He right away made me feel better.  He said "CTCA is a RESEARCH FACILITY for one, which means they have used this oral chemo on patients with small cell and have positive results.  They aren't just giving the old tired chemo to all the patients that aren't working in the first place.  So yes of course your Oncology team here is going to react this way, their research doesn't show Temador to work for small cell but for brain tumors, but they also haven't tried it either." I told him Michele said it would totally wipe out my platelets (what I have left) it would be too hard on my system.  He says "well they are giving it to you in a low dose, so it might and it might not." Rubin seems to think the Temador is the right way to go, once my platelets are under control.  He thinks CTCA is the place I need to be and will support me in any decision I make.  Rubin said also that he has heard a lot about Temador and it working with small cell...He added another supplement to my daily regimen. Which is another supplement to slow if not STOP the spread of the disease.  We now have labs indicating my cancer markers and he believes that now that we know what my markers are, we can start changing the my levels with supplements to cure me of this nasty disease.  I will add a powder substance to my daily routine twice a day in hopes this helps to slow the growth and eventually stop and kill the cancer.  Dr. Rubin is an amazing doctor.  He gives me the HOPE and STRENGTH to keep fighting, that's what I had lost today at Dr. Borst's office. 
This I believe is what a doctor, an ONCOLOGY doctor should do for you...Give you HOPE! 
After talking to Dr. Rubin, and hearing him out I think I have decided to go with the treatment plan CTCA has come up with.  Once I get my platelets on board and find out what's going on with them, I will start the Temador.  Dr. Rubin said he has many patients on this medication and they do very well, hardly any side effects. 
I have my bone marrow biopsy tomorrow and will have the results for that in about 7-10 goes the waiting game again.  I hate this part.  Dr. Rubin doesn't seem to think they will come up with anything with the BMBX, nor do I and nor does Dr. Bibb...but we have to rule it out.  I am having my BMBX tomorrow at Banner Desert.  I will check in at 8am and it should only take like 30 minutes.  Ashley is off tomorrow to be my taxi driver! haha Thanks again Ash! :) Maybe I can treat you to lunch to thank you for all your help! Be thinking of a good healthy yummy place to eat!
My IVIG went pretty ok this week.  It was a long week.  Long days and a LOT of fluid.  One of the side effects of the IVIG is headache, I have had one for two days...what a joy this has been.  I hate headaches.  My platelets on Tuesday were 33, they were 111 last week.  I had them drawn again on Wednesday and they were 61.  They are at least going up, just not as fast as I would like to see them recover.  I will have them drawn again tomorrow before the biopsy.  IVIG comes in 10 gram bottles that is about 200 ml, I had to be infused with 8 bottles each day.  Well since scheduling screwed up and put me on for 10am and we didn't start infusion until 11am, I had 6 bottle on Tuesday and 10 bottles on Wednesday. 
 I was feeling fine for the most part no serious side effects.  Just the headache, extra full feeling.  I felt water logged.  Its a miserable feeling.  I am glad it's over.  I hope I don't have to do this IVIG again.  8 hours each day sitting getting infused is just too much for one person to handle.  I have high hopes that after that BMBX is over and we get the results back on that and I am finally cleared of any type of BONE CANCER, (which could be causing the low platelet count) I will then be put on a medication for my platelet's and the ITP to keep my levels at and in normal ranges.  Which will then allow me to start the Temador oral chemo. I can't tell you how ready I am to get on this oral medication and start kicking cancer ass again.  I am so sick and tired of not having anything done and then to get scans and see the dang cancer has metastasized to yet another part of my body.  It's frustrating and so irritating.  I am doing everything I can on my end to keep this from happening and yet another scan shows it's in a new area.  Then to have Dr. Borst's office tell me this isn't a good plan, well it's a PLAN, and it's at least SOMETHING!!  Whereas they aren't doing anything, I had my last chemo on January 4th, 2013.  I had a physical and follow up 6 weeks later with Dr. Borst and was "clear".  Only to have a chest xray done in February and show mets in my lungs.  So they have known since February that I have possible mets, and yet here it is MAY and we are still sitting on our asses doing nothing.  I have had it! I have called several different treatment facilities throughout Arizona, California and even Mexico.  I am getting my PET SCANS and PATHOLOGY reports into the hands of many well known physicians.  That will review my records and tell me if I am a patient they can help.  All three of these physicians have many years of experience in either neruoendocrine cancers, or small cell cancers.  I however am not looking forward to having to travel and go outside of my home state to get treatment, but I have to do what I have to do to save my life.  The best part about this is, once they physicians receive my records it's just a matter of them reviewing them and telling me "yes I can treat you, or no I can't".  If they CAN treat me I will then set up a consultation appointment and go from there. If they can't we are back to the drawing board.  I don't think at this point in my treatment that any more opinions are going to hurt.  SOMEONE out there has to know about small cell and SOMEONE has to be able to figure out my disease and TREAT ME! I just know it!

Monday, May 6, 2013

Returning to normal...

We are back from Chicago, The Relay for Life is done. 
I want to take this time to THANK the following people:: These very special individuals are near and dear to my heart.  If it wasn't for each of you this relay wouldn't have been possible.   I would have been walking the full 12 hours myself! :) So THANK YOU FOR PARTICIPATING!
Scott Larson
Vickie Johnson
Bannon Johnson
Katrina Johnson
Brinley Johnson
Breckin Brown
Ella Brown
Ashley Brown
Dustin Brown
Marsha Larson
Cathi Bell
Jen Pelletier
Matt Frantz
Audrey Frantz
Jesse Frantz
Amanda Frantz
Tammy Orletsky
Bri-Anne Lundell
Che Kelley
Malisa Caldwell
Jensen Caldwell
Hailee Caldwell
Madison Caldwell
Carson Caldwell
Dorothy Cook
Brittany Ford
Britney Schuster
Nathan Schuster
Paula Williams
 I want to give an extra special THANK YOU to my mom for taking over while I was in Chicago and agreeing to take on the Relay had I not made it back in time. I really have the most amazing mother in the world. She continues to do things for me day in and day out. She is what all mothers should be. Endless amounts of love.  THANK YOU MOM!  :)
I have highlighted all the RELAY LIFERS as I like to call em...these are the true hardcore team members that stayed ALL NIGHT...From 5pm Saturday until 6am on Sunday.  We were all crazy tired, seeing things, even saying things like "I only have this string to keep me warm and my suitcase is COLD" ha ha 
I have never done a Relay for Life event before.  It was such an amazing experience.  We took THIRD in teams that raised the most amount of money!  :) We raised $3500.00!!!  That's just AWESOME!!  I am so excited I could contribute SOMETHING to cancer research.  I can only imagine had I not had so much going on I would have been able to dedicate more of my time to the Relay we would have been first place! There is always next year and that will be my goal. :)  Our *STRENGTH*LOVE*COURAGE*
team was the ONLY team that actually walked the WHOLE ENTIRE 12 HOURS...We ended up with about 8 people that stayed all night out of our whole team, in the early morning hours it was tuff and touch and go there for awhile, but we made it!!!
I would like to ask those of you that haven't done a Relay for Life event before or even those of you that did the relay this year for the first time but were unable to stay the whole night to consider doing a Relay for Life event in the future, and dedicate your time.  I know 12 hours is a lot to ask of one single person.  I now you all have many things going on in your lives and 12 hours is just too much to ask of you.  Please keep in mind, we cancer patients don't have the choice to just STOP fighting.  Just STOP walking, just STOP all together, or cancer wins.  Relay for Life is an exhausting event, I am not going to lie, but it gives you just a SMALL glimpse into how EXHAUSTING a day in the life of a cancer patient can be.  The fights, struggles, exhaustion, weakness, the list goes on, but I promise YOU won't REGRET it.  Keep it in mind for next year.  I will be recruiting those HARDCORE KNOW who you are and I THANK YOU WITH ALL MY BEING for helping me fight back against cancer. 
Now on to doctors appointments, IVIG infusions, Bone Marrow biopsies and labs.
Today, I needed to call LTD, clean my house and find a place for all the Relay for Life crap, pay bills, make doctor appointments, Schedule the Bone Marrow biopsy, and for the IVIG.  So much to do and I don't know where to start.  First thing is first, I called LTD.  I still haven't heard from LTD on if I was approved for not.  This is going on three months without approval.  Which means three months without pay.  I called Rose bright and early and got the GREAT NEWS, I was APPROVED!!   Even better news she tells me "did you not get the check?" Um...what check?? Ha Rose told me I should have a check in the mail, as they sent it out almost two weeks ago!  WOW!!  So I have been approved for TWO WEEKS, and nobody even called me to tell me I was approved!  REAL NICE! So thankful I have my money!  So the kids and I quick take a trip to the mailboxes and sure enough there is a check in the mail!  Well I guess lesson learned I need to check my mail more often! Would have been handy while we were out of town.  I finally got my house cleaned.  Took me all day to do it, but I finally got it all done...My house is over run my Relay for Life crap! If any of you need or want a Relay Tee I have some is all sizes but Large. These are the shirts that we were given at the Relay, not the ones I made...  :)
I got my doctor appointments all set up.  I have labs and IVIG tomorrow and Wednesday both days at 10am at Dr. Borst's office.  I still am not able to start my new oral chemo until Dr. Williams (my new gyn/onc) talks with Dr. Borst.  I have been harping on Michele since Thursday and she says they still haven't touched base.  I am starting to wonder if this co-management health care is going to be for me.  I don't want to be spending all the time on the phone making sure this or that was done by this doctor or whatever.  I say my prayers it all works out.  For now I am still waiting for this conversation to happen so I can get started on my new chemo meds. Sooner rather than later would be nice. 
I am scheduled for my BMBX on this Friday at 8am at Banner Desert.  It will be about a 2 hour procedure.  I had hopes to go to Show Low this weekend for Mother's Day and I still hope that is possible.  Banner Desert does tell me this shouldn't be an issue, but I might have to go up Saturday for the day instead of Friday.  The BMBX is going to tell us if I have any cancer in the bone.  My PET SCAN was clear of anything in the bone, and my labs don't indicate bone cancer, but we have to rule this out before we can fully agree it's ITP
I have decided with the news of my scans, and that CTCA is sure the cancer has metastasized to the lungs I am going to opt NOT to do the lung biopsy that Dr. Bibb is wanting to do.  The chemo I am going to be taking is going to effect the lungs and the cancer anywhere in my body, there is no reason for me to do a biopsy.  I just need to get the ITP under control and the IVIG will help with that. This week is going to be a long week.  I was so looking forward to just hanging out with Breckin and Ella this week.  That's out.  I'll only see them Monday and Thursday.  POOP!  Tata isn't happy about that.
There is always next week right! :)

Thursday, May 2, 2013


Today was our last and finally consultation day here at CTCA. 
My day started about 8am Illinois time and we are still going strong.  Its been a long day but not nearly as long and tiring as yesterday (for whatever reason) We got a lot of information and a lot of our questions answered.  A lot of NEW information as well.  Some bad and a lot good. 
Let's see where to start with today...
My first appointment for the day was at 10:30am with Dr. Williams the Oncologist, followed by 11:00am with Naturopathic Medicine, 11:30am was Nutrition, 12pm was case management, 1pm was tying up all lose ends before we leave for home.  Dr. Williams...she is first and foremost important. She gave us the run down of labs results, scan results and her treatment plan.  On paper (IE labs) I look like a very healthy individual.  On films (IE scans) I am a little bit of a wreck.  Good thing we do both of these hand in hand.  Labs all came back good.  My levels are all within the right ranges, with no cancer markers lighting up.  That's GREAT news.  My cholesterol was a little elevated, but they insure me this is nothing to worry about as my labs were drawn late in the afternoon after I had eaten.  Plus after talking to the Nutritionist she assures me I am not eating any foods I should be staying away from to elevate it.  My platelets were 111 on Monday, which is GREAT, but not so great.  They haven't been THIS high since November last year.  Why is that not great, the reason for them being so high is due to the steroids Dr. Bibb has me on.  So that tells us I do in fact have ITP and that needs to be addressed and treated ASAP.  I am thankful my labs are all up and in normal ranges.  This helps fighting this disease a little easier. EKG that was done on Monday was NORMAL as well!!! More great news!!!! :)  ON to my SCANS...The ones we have been waiting for so anxiously.  First was the Brain MRI.  That came back CLEAR...MORE GREAT NEWS...My brain has NO mets! :) Thank you Lord! Now we have a baseline to go off of for future scans of my brain.  CT SCAN of the CHEST, ABDOMEN AND here comes the kicker...BRACE yourselves.  They found changes in my CT Scan from my last CT Scan back home.  First change is there is now a spot on my right Adrenal Gland (which sits on top of the kidney).  The left adrenal gland looks and appears to have no tumors or masses.  Both kidney are clear and have no signs of hydronephrosis or metastatic disease.  Gallbladder is absent, Pancreas is normal and spleen are all normal.  Which is more GREAT NEWS!  The CT scan does mention "small ill-defined hypodensity in the periphery of the right lobe of the liver.  They should be followed."  So we will continue scans to watch this area for metastatic disease.  As for the pelvis, there are several masses.  As my new CT Scan shows, I have currently three tumors/masses in my pelvic region (where the cervix was).  Also says "nodular lesions also seen in the area of the vaginal cuff including the cul-de-sac."
Treatment:: NO RADIATION
The reason for this is my body has already gotten it's maximum dose of radiation, especially to the pelvic region.  If we do anymore radiation to this area there is a chance of doing more damage than good.  CHEMOTHERAPY is my treatment of choice.  I can't tell you how many rounds, as we don't know.  The chemo drug they are putting me on is called Temodar.  It is an oral medication I take everyday for 21 days and then break for 7 days and then start it back again for 21 days.  It's a low dose chemo drug, but can be increased to high amounts if my body can handle it.  We will start the dosing out at 140mg a day and increase from there if need be.  The main side effects are:: Fever, chills, cough, sore throat, body aches, seizures, severe nausea or vomiting, sores or white patches on your lips, mouth or throat, usual bleeding, bruising or weakness.  The most common in patients taking this medication is nausea.  I have gotten scripts for this in case it happens and let's face it I am an old pro with handling nausea! :) The one thing this medication WON'T do is make me lose my hair! :) That's MORE GREAT NEWS! I might have some thinning, but it won't fall out like it did this last time. 
I will still continue to get regular labs drawn weekly.  I will follow up with CTCA here in Zion every two months.  At these visits we will increase or decrease my medication, do scans and do all my follow up care at this time.  Dr. Williams said normally I would follow up every 3 months, but she doesn't want me waiting that long between visits to make sure it's working.  This medication WILL shrink the tumor to NOTHING! There is only three reasons why I would stop the Temodar, One: If it shrinks the cancer and I have no cancer left in my body.  (WHICH IS WHAT WILL HAPPEN) Two: If the side effects are too harsh on my system and we have to change to another medication.  Or three: The medication isn't doing what it's suppose to by shrinking the tumors. (which isn't going to happen).  Otherwise I will stay on this medication until all the cancer is gone from my body...which could be any time.   
So this is all the news this whole week has been building up to! It's a lot to take in, especially with having more cancer is places we didn't know I had.  Strangely I feel at ease,  I feel like a huge weight has been lifted from my shoulders and I feel God's guidance.  Since before coming out here Scott and I have had it weighing heavily on us doing treatment in another state.  Having to travel, being away from home etc.  I prayed last night that if this was the path I was to be down, where I was going to get batter, that God would give me a sign.  I would say he has given me the biggest sign there is.  He has let it be possible for me to still be seen at CTCA, but get treatment at home!   I can't thank him enough for the answered prayers.  God Is GOOD
We are all set to fly home! I can't wait.  Before we do this, we are taking ONE full day to spend in the City...We are going to see everything Chicago has to offer!!!  Which means we will see the SHEDD Aquarium, "The Bean", possibly eat CHICAGO STYLE PIZZA, Get some Sea Food and see all the sites!  Tomorrow will be a busy day of sight seeing and train rides, and I CAN'T STINKING WAIT!  This has been a wonderful experience and I am so thankful to Scott for being here every step of the way.  I know how stressful it is on him (as he worries way too much) and I know I am NOT the easiest person to be around ALL THE TIME...especially with my mood swings.  Sorry babe.  I want to thank my family for being there throughout this whole process and understanding, loving and supporting me anyways! :) It's a long road, but I know we will pull through it. 
We are all survivors! :)
We will arrive back home in Arizona about 10:20am on Saturday, JUST IN take a quick nap and get things going for THE RELAY FOR LIFE!!  I am SO excited to be able to make this event, as I have worked so hard on making it happen and I would just be so sad if I couldn't make it.  It will be a long weekend for Scott and I, I am sure of it!  We will be up about 2:30am on Saturday Morning and will be going non-stop until about 7am on Sunday.  IF I CAN DO IT WHILE FIGHTING CANCER, YOU ALL CAN DO IT TOO...
SO I EXPECT YOU TO BE THERE, WITH BELLS AND WHISTLES ON, and I expect to make it the best Relay! :) 
I will see you all Saturday afternoon REMEMBER camp set up time is 3pm-5pm, so you WILL need to be there between these hours to get camp set up as Relay starts promptly at 6pm!  There is opening ceremony's so PLEASE make sure to be at Relay between 3pm-5pm.  If you are unable to make it for ANY reason, please call, text, or email me so I can make the necessary changes to our roster.
Thank you for supporting! See you all Saturday!!