Sunday, January 26, 2014

PET Results

"I am learning to trust the journey even when I do not understand it"

This was a quote I found today and I think it pretty much suits my current situation.  I had my PET scan last Tuesday.  If you remember from a year ago, I am always looking for signs.  Well, Tuesday I got a positive sign after the scan.  I had the day to myself thanks to my mother-in-law for watching Ryan since I was radioactive and had strict instructions not to hold him, hug him, swap spit with him, urinate on him, etc.  So after the scan I decided to venture over to Walmart for some groceries.  I am not a Walmart person, but we had a gift card from some Christmas returns so I figured I would use the card on groceries.  As I was shopping, I ran into Pastor Dave from the Lutheran church I have joined.  I am a new member to the church and most there do not know about the cancer, but he does.  So we chatted for a bit and after I walked away, I was so giddy!  It just felt right.  I felt that this was my sign that everything was going to be A-Okay!  Wednesday my parents came in to help with the kids and to keep my mind busy.  That was very helpful since I do not do good waiting for a Christmas surprise, let alone waiting for sentencing.  (I have decided that waiting for PET scan results must be what it is like for a convicted murderer to hear their prison sentence)

Don and I met with Dr. Phillips Friday evening.  Note to self, make an early morning appointment going forward....Anyhow, she came in and informed us that my PET scan was not that different than my one in August, but there were some changes.  My right breast was showing lit up, which it did not in August because I discovered the cancer was back pretty quickly.  So I was expecting to hear this - also because that is where the pain is so this made sense.  She then told us that there are 2 lymph nodes around my lungs that are showing cancer.  She did say that the 2 small spots that they saw on my lungs back in August were not lit up, so it is safe to say that if that was cancer, the Xeloda wiped those out.  Or it could just confirm that they are / were scar tissue from radiation.  Next she informed us that there was also a "hot spot" on my left hip bone.  Dr. Phillips said this spot is so small I would not know it was there by pain or any other symptoms.  So that is under "watch", but was not determined to be cancer in my bones at this time.  Don and I went over the actual scan and saw the spots she was speaking of, which I think was helpful to us to know exactly where she was talking about.  I asked Dr. Phillips what this exactly means as far as my prognosis and if this is considered "bad news"- it is to me, but I wanted to know / hear from her, it could be worse.  She explained that it is not in my liver, lungs, spleen or other organ so that is good and that there are plenty of other drugs out there for us to try.

We then discussed potential drugs for me to go to next.  Xeloda was very easy for me.  Not only could I tolerate it, I also was able to stay out of the hospital / cancer center as much as possible and I could hide the illness from outsiders.  So she started by telling me, the convenience is now out the door as we move on and so is the slim to no side effects.  Her and Dr. Nanda (Triple negative expert at the main University of Chicago Hospital) felt that a trial that has one open spot looked like the best option for me.  The trial consists of 2 drugs by IV given weekly - Gemcitabine and Carboplatin.  I have been on Carboplatin before and handled it fairly well minus the blood transfusion I needed after my first cycle.  The third drug is an oral medicine which is the drug that is under a clinical trial.  It is called Mifepristone.  This is taken on day 1 and day 8 of each cycle.  A cycle is 2 weeks on and 1 week off.  So going to the hospital once a week for 2 weeks for the first 2 drugs and then a rest of 1 week.  The IV drugs are known drugs for Stage 4 breast cancer and specifically Triple Negative.  The oral medicine is under trial to find the safest dose when given with the other 2 drugs.  It is an approved drug by the FDA, just is not proven to be a drug used for breast cancer.  So my consenting to the trial, I will receive the oral drug, I just do not know the dosage amount that I will receive until I start.  Sounds a bit scary, but she stated we can make adjustments if we need to so their plan is not to cause me to OD.

Obviously this is not the news we were hoping or praying for and I have sunken into a depression of some sort, but I have not given up.  I'm sad because I can no longer shelter Justin from what is going on.  I will lose my hair, which makes it obvious to him and everyone else that I see at play groups, church, Justin's school, the grocery store or even myself that I am sick.  But mostly for Justin.  Ryan is still little enough to hopefully not realize anything, but Justin gets it.  So if you see him out and about, a smile, a hug or a sucker would be nice!  We also have him seeing a social worker at school.  Since this isn't my first bout with serious news, I keep reminding myself that the beginning is always the hardest part.  There are so many unknowns with how much, how often, what do we need, what if this, what if that, etc.  Then once I start going I get out of my funk and can usually keep up with the day to day.  So my hope is this funk is short lived and I can get moving as soon as possible.

Tomorrow I should hear from the clinical trial coordinator to consent to the trial and will then hopefully hear when I can start.  Some trials require a "wash out" period.  This means being off of all drugs for a certain period before you start the trial.  I'm hoping this is not the case and I can get this going, but if not, I will do my best to enjoy the next couple of weeks.  I appreciate all of the kind words, cards, texts etc.  It helps to keep going when you know you have so many caring supporters out there!  As far as what we need - I do not know right now, I'm finding it hard enough to figure out dinner!  I know we will need help with the kids and possibly meals on my crummy days with chemo, but until I start, I do not know when or if I will have crummy days so for now, keep your phone on:)

We can not thank you all enough for your support and prayers.  Please keep them coming!



Monday, January 13, 2014


The holidays have come and went and I think I am still catching up on things around here.  Doesn't help that since I am home, I catch myself a lot saying "I will do that tomorrow".  But all with a good reason why I didn't do it today....Justin was home due to the weather last week and then also due to a case of bronchitis for even longer when school did start back up  Whitney has been here and was to leave last Tuesday but due to the weather she stayed until Wednesday.  Thank goodness since Justin was sick.  It was nice to have 2 of us here to keep the kids from each other.  So far so good, Ryan has not gotten it.  (Knock on wood)

I know a lot of people around here did not particularly like the cold weather and blizzard conditions last week.  I on the other hand, thought it was wonderful!  I had no place to go so let it snow.  I know if I worked I would have been just as angry as the rest of you that had to get out or worse yet, had to get their children out.  But for me, It was extra time with Justin and extra time with Whitney!  

On the health front, I am still on Xeloda.  I have finally discovered that I am not immune to the side effects of the drug.  One was red feet and hands.  This is my rest week on chemo and I think that is a good thing!  Yesterday when walking I had some pain in my right foot and when I took my sock off I discovered that along my heel,the skin is cracked and in one area it was completely cut open.  My hands are doing okay, although they tingle and around my cuticles they are peeling.  So hopefully this week being off of chemo, it will be just enough time to heal before I start back up next Sunday.

I did see Dr. Phillips on Tuesday.  I think I was extra emotional with the holidays being over and Whitney getting ready to leave.  I cried through out my appointment.  I couldn't mask the fear and anxiety I am experiencing with my pain.  No one can seem to explain it or understand when I explain the feeling to them.  I know I have had bad luck these past couple of years, but I don't think it has been that bad, that I have a cancer pain that no one can fix.  I did visit plastics before Christmas and their recommendation was doing a surgery where they would graft skin off of my back and attach it to my breast area to allow for more space for my implant.  They felt there was a 50/50 chance that my pain could be from my damaged skin from radiation.  This risk I have known since I had my implants and there is not a dead line of when if you don't feel pain, you are considered in the safety zone.  I didn't like their answer since 50/50 isn't huge odds and to undergo a surgery that may do nothing for me....yeah no thanks.  So meeting with Dr. Phillips I asked what she thought about this and she explained she did not feel comfortable with me doing this.  With skin grafts you are at risk of infection and even though I feel good, I am extra susceptible to infection and I would also have to stop chemo for some time to do this surgery.  So that brought on the tears.  Even though I had determined on my own the surgery was probably not for me, her saying it and not offering any further resolution to stopping my pain, plain pissed me off!  So she came up with the plan to do another scan.  It has been 6 months since my last one so it is time, but also to help my anxiety to make sure we are still on the right path as far as chemo goes.  Of course this brings on more anxiety than I have originally had.  So scans are scheduled for next Tuesday the 21st and an appointment with her is scheduled for next Friday, 1/24 at 4:20.  So I ask for extra prayers throughout these next 2 weeks.  

I am on edge.  I feel like as scans approach you start to put your life on hold.  So much weighs on the results.  Will I be able to continue my plan to have Ryan involved in activities daily if I for some reason need to start a different chemo?  Can I dye my hair or is that a waste of money?  And from following another stage 4 breast cancer pal, "Can I continue to buy the green bananas".  When I saw this I originally though oh how morbid, but it is the truth as I wait for the scan. I hate to go there and I know you all hate to read it ,but I have to prepare myself because my future rides on the scans.  I can still control my mood, my mind, and emotions, but I can not take back what the scans could reveal.   So mom and dad have graciously agreed to come see me next week.  With the scans being Tuesday and no results to Friday, I need them here to keep me busy and to keep the kids busy.  I don't know that I am the best mommy when I am waiting for test results.  I kind of go into a daze and just go through the motions.  So they will come in Wednesday night and stay until Sunday.

Lastly, I have started acupuncture!  I did my first treatment on Saturday and I am in love!  The lady I am seeing is so knowledgeable and spent a lot of time explaining things to me before sticking me with needles.  I fell asleep during the treatment and slept better than I have in years.  I have to say I will be having a twice a week affair with acupuncture!  It is pricey, but if it can rid me of some of this pain or better yet, rid me of cancer, I will pay what I have to!  

So if you can please please please keep me in your prayers these next few weeks.  I could definitely use them.  And please also pray for a little boy Mason Whitaker.  He is the nephew to my friend Megan.  He is 1 1/2 and was diagnosed with leukemia last week.  He is being treated in St. Louis and is in great hands, but has started down a long road along with his family.  They do have a blog under under his first and last name or you can find their page on Facebook under Prayers for Mason.  

Love to all!