Welcome! Read Me!

This blog is created to give you a central location to answer any questions you have about my current and upcoming treatments and reactions. It is also created to help me make Lemonade out of the Lemons I have been given, so I will keep this as positive as I can.







Thursday, May 30, 2013

Still Waiting... But Progressing...

Well it is nearing the end of another week. It was a short week as far as Radiation is concerned since I got Memorial Day off. I just have 3 more radiation treatments scheduled. I will go Friday, Monday and Tuesday. Radiation is a weird thing for me. It takes about 45 minutes to get there and 45 minutes to get home...and about 10 minutes for the entire process there. So if they would just invent the beaming machine from Star Trek already it would save me so much time. If it wasn't for the travel I could just zap over and back before the girls even knew I was gone. But alas this isn't available so I have been lucky enough to have wonderful people who help out. I seriously can't thank you guys enough who have stepped in to play with my girls while I take care of this fun little chore. They are always so excited to play with friends and they love you guys. So Thank You a MILLION Times!!

Yesterday I met with a Pulmonary Specialist. We discussed the options we have to get the biopsy results that we need. The original biopsy was a needle biopsy through my back. This was apparently not the right option as we believe that it didn't reach the mass that we needed to reach. So the two options we have now are to go through the bronchial tube and if the mass is broken through the wall of the "pipe" then he can take the biopsy from the part that has come through... However, if the mass has not gone through it then they will have to then do a turn in the pipe and go out into the lung opening and reach  (watching through Ultrasound) to get the biopsy. The doc is reviewing my x-ray and CT Scans  tonight to determine what we need to do. If it is the first option we will get the procedure scheduled right away, if it is the second option I will have to go to an additional Pulmonary Specialist up at the U. So here we are... Hurry Up and Wait!

I feel like I should be functioning better than I am. I usually do ok while I am running around town, but once I get home and stop I am pretty much done for the day. I have dropped a dose of Steroid so that is dropping my energy level. it does help me to not feel like my head is going to swell to the point of explosion, and it has decreased my hot flashes, but it has increased my need for Percocet. So I guess it is just one of those things that I have to decide what is better... Which side effects do I prefer??? I would love to have NO side effects.... but I guess at this point that is not in my options.

I am grateful that my work is working with me. I feel bad that I have been missing as much work as I have been recently, but at least they are holding my place and letting me get to where I can feel ok when I work. I was thinking since it is just sitting I should be able to do some more, but it takes a lot of energy to do what I do. I love my job, but it is REALLY hard to be super high energy when you just want to sleep. LOL I am so blessed to have help in places I need it. It is like jobs for Alex and Myself happened at the right time and place to make things easy in this situation. It is awesome to know that I am being looked out for by my Father in Heaven! He knows what I need and provides! Sometimes directly and sometimes through those around me.

While looking at some of my images from my PET Scan I found this one... Not fully related, but it made me smile... :) Enjoy!



Saturday, May 25, 2013

Better News

Well, Sometimes patience is not my strongest attribute, and sometimes it gets the better of me. With all of this "Hurry Up and Wait" stuff  I am being tested. I may be passing by the skin of my teeth... Maybe...

The good thing about time, though, is that it passes and you don't have to go back and feel the stress of that time again. I am just going to let it go.

So... Where are we now???  After the Great Hub-Bub with the Port on Thursday, and deciding that it is much better to have it paid for flat out instead of having to pay for it out of pocket,  I was able to get in on Friday and get it taken care of. I am excited to have that part behind me. It is a little sore from the procedure, but more sore because I have limited motion in my neck. It is like a forced "crick" in my neck. I go in on Tuesday for them to check the site and make sure that things are ok, then I will get the stitches out on the 4th just in time for Chemo to start on the 5th. So I have a beautiful bandage for all to see  for a while, but that is a small price to pay to avoid the constant needle pokes that I have dealt with up to this point. My veins are not always great, so to not have to deal with that is going to be WONDERFUL!!!

I am meeting with a Lung specialist on Wednesday to discuss how we will be able to best get the Biopsy result that we need and not have to go through the fiasco of no results next time. This will delay the result a little but I am again going to try my test of patience and instead of rushing into it will opt for having a result instead of bunk.

All in all I think things are turning out ok. I wish I could figure a way to get my Biopsy result sooner, but I can't... So we will keep on moving forward and do what we can with what we have.

Wednesday, May 22, 2013

Answers must be overrated....

After a week of waiting for the Biopsy results to come in... we find out.... NOTHING.... It looks like the Doc who did the Biopsy missed and got some normal tissue. So that test is a complete bust. I love waiting so much that I get to do it again. My Oncologist is consulting with a pulmonary specialist in order to determine the best route to get to the mass to get the biopsy result that we need. Hopefully in the next day or tow we will have this scheduled. I am hoping that we can put a rush on it so that we can get answers without having to wait for another week again for a result.

In the mean time... We are going to try to move forward to get ready for Chemo for when the time comes. I am going to have a port placed so that I don't have to deal with the consistent IV sticks. This will be nice with my history. I was supposed to go in tomorrow for this, but something is awry in the scheduling so I may be going in on Friday instead. I am still trying to get to the bottom of that. I hope to have that question answered sometime early tomorrow so I can plan around it.

The rest of the plan is coming together tentatively. All things going as planned, I will be starting Chemo on June 5th. Unless the biopsy results come back drastically different than we expect we will have Chemo once a week for 2 weeks and then have a week break. This will be Gemzar. He is also looking into using an Oral Chemo, Xeloda, that I would have to take every day for 2 weeks. Depending on cost I may opt to just do an IV form, Carboplatin, with the first Gemzar. The bonus to this is that my health benefit is maxed out so I wouldn't have any out of pocket for it, for the Pill it would come out of my Prescription benefit and I would have to pay the co pays on that. Not sure what that would be yet, but definitely something we are looking into.

In addition to this I will have to take a bone strengthener. Since I have this in my bones it has the tendency to make things more brittle. So every month I will get a nice boost with X-geva.

At Radiation they did a new little tweak it zinged me a little, and it made my face look like it was a giant Balloon. it went down eventually, but I am hoping it doesn't do that again. I look a little weird all swollen up like that.

So... All in all... it was a little of a humbug day. but at least I have something moving on... and some more Hurry up an wait....

Sunday, May 19, 2013

A new Week...

Here we go into a new week. We know a little more than before, but still waiting on more to keep learning.

The updates. The Certainty is there that it is a Cancer. The uncertainty is in what kind it is and what to do with it. I go in for my biopsy results on Wednesday. At this point we will know more of our game plan. Part of this game plan, unfortunately, will include some Surgery. Not for the new bits, but residual from the Old bits. In hindsight the healing issues that I have been dealing with are quite possibly linked back to this cancer being in my body. Before I can start Chemo though I am going to have to get things to hurry up and heal. I meet with my surgeon on Monday morning so that we can make a plan.

As for my current Pain Management. I am taking a pretty High dose of Steroid, as well as Percocet to manage my pain. In addition I have started using doTerra Deep Blue. I started full Radiation late in the week. This is an eventual help. But when I went in on Friday feeling worse than I was on Thursday, I was only slightly discouraged when they said that they do expect it to be worse before it gets better. This is Proof that they are radiating the right place and doing what it is supposed to do. The Cancer in my spine is essentially swelling in my bone and causing the nerve to be very painful. The Radiation causes additional swelling as it gets to work. So... that means it is not feeling great all the time. I did get some reprieve today and felt actually pretty good. A Sabbath Day Miracle. I am not sure if the break from the radiation this weekend is enough that it will cause it to re-swell when I go back in tomorrow, or if it is good enough that it will actually stay down for the remainder of my treatments, I guess time will tell. I have 11 more treatments to go (Monday-Friday) Once Radiation is complete then we will tackle our Chemo Options.

In the mean time I will be setting up appointments for Second Opinions. As my Aunt put it,"This isn't just a broken Leg" I want to make sure that I am getting the Right care for me. I am going to have to trust in my Discernment to help guide me to the the right treatments. There have already been a couple options placed before me, and I am not sure how I feel about them. But time and research will get me going the right way.

I just need to take a quick moment to say Thank you to everyone who has reached out to me. I am so blessed to be surrounded by such wonderful Family and Friends! There is no place I would rather be than in your company! The Faith that Resonates from all of you is bound to keep my spirits high and my outcome wonderful! I am inspired by each one of you and your devotion and ability to help when the need arises. I am going to try not to use up more than my welcome from those who have offered their time. I just hope that my kiddos are not too much of a burden on those of you who have the joy to have them visit you from time to time. I know they can be a crazy handful sometimes. But hopefully in little chunks they are ok. ;) They are a blessing that breathes normalicy into my crazy day's at least. Something has to keep me grounded.


Wednesday, May 8, 2013

Here we go again...

Well things are all in the preliminary stages of everything, but I know that there are a lot of people curious and needing more information. So here goes...

For the last few weeks I have been having pain in my back. I have been to the Chiropractor, but it was very temporary relief. Then last week it got to be so intense that I couldn't take it anymore and I had my mom take me to the ER after the girls had gone to bed around 9 PM on Friday night. It was a long night, we left the ER around 3 AM on Saturday. When we got there they had to get me set up with an IV so they could give me Morphine to give me some relief... (it didn't work) they also did some blood draws. What they were looking for is elevated levels of Calcium and one that shows signs of blood clots that can sometime cause this type of pain. While I was waiting for those results they gave me another shot of Morphine... (it didn't help) and then set me up for an xray of my back as well. Well the xray didn't tell us much, I have some mild arthritis and some degenerative discs but nothing that should be causing me to be in as much pain as I was in. So they set up a CT scan to check for blood clots because that blood test came up high, But that didn't show us any blood clots either. Unfortunately my lung was also in this shot and they saw a mass around the Stem going into my lung. Because of my history with Breast Cancer they decided that it is most likely cancer. They also set me up to get an MRI of my spine to make sure if there is anything else going on, and then told me to get an appointment with my Oncologist. I was an obedient girl and did that and after a little bit of a fight also got the MRI scheduled.

I had my MRI Tuesday morning and then went to my Oncologist shortly after. We didn't have the results on the MRI until the end of the appointment but after my Oncologist saw the CT Scan he said that he agreed with the ER diagnosis. Once he was also able to get the MRI results at that time he said there were also a couple spots on my spine. So with all of that put together it was more likely for it to be cancer on both spots. My Oncologist then prescribed me with a Steroid to help me with my pain. It is better than the Morphine and Percocet that I have tried, though it is also not perfect, but at least I can move without screaming. That is definitely better!

The chore now is to determine if it is my Breast Cancer Metastasized or if it is a completely different thing. So... Tomorrow I am going in for a PET Scan to check my whole body for any other signs of Tumors. Friday I will go in for an MRI of my Brain to find out if there is anything in there. (no jokes about them not finding anything after 3 kids and Chemo I will be shocked if they find anything there too.) :) Monday I will get set up to start Radiation on my back so that we can hopefully give me even a little more relief from my pain, Tuesday I will go in for Results on the first two tests and then Wednesday I will go in for a CT guided Biopsy of the spots on my back. Then I will be back in the Oncologists office on the following Wednesday to get the results of the Biopsy. Then once all of that is done we can start to actually get a plan in place to figure out where we go from here.

At this point I know many people have offered to help. And I am so grateful to be surrounded by awesome people!! I wish I had something to help with at the moment, but mostly we are in a phase where we are just playing things by ear and trying to figure out what we need and what we will be doing and for how long... So... I will definitely be letting those of you who have offered to help know what is needed as that becomes apparent to me. (I hope sooner than later, but you never know with these things.) In the mean time please continue to pray for me and my family. I know that will be the biggest help at the moment.

I haven't told the kids all of what is going on until I have a plan that I can tell them as well. They have been through this before so I am hoping that they won't take it too hard. But in the mean time if you talk to them please don't talk to them about it yet. All they know right now is that mommy's back is hurting and they have to be gentle with me for now.