What is this?

What is this? I don't really know, other then a continuation of my updates and writings that I was sharing previously on Caringbridge of this journey through cancer and now widowhood and single parenting.

Maybe it won't end up being anything at all, or maybe it will be a glimpse into my heart, my life, my current situation, my testimony.

Whatever it becomes, I am touched that you are interested.

Monday, June 30, 2014

Where we wait

I wanted to quickly let everyone know what is going on.   

Basically, for a while Brandon has been feeling unwell at times, off an on.  For the most part it seemed to be attributed to his Avastin Treatments.  His last PET scan in February was clear, and he wasn't feeling great at times then, so we had been pursuing other possible issues. 

2 weeks ago he met with a Urologist and his Gastroenterologist.  The GI doc (who is absolutely fabulous), ordered a CT scan and blood work including checking his thyroid and CEA levels.  Based on the symptoms and the fact that Brandon discovered there was a dosage mistake with his thyroid medication over the past 5 months (only getting 25% of the dosage needed), we were quite confident that had to be the issue, paired with his kidneys just being tired of the Avastin. 

When the CEA levels came back raised, it brought up a level of concern that maybe we should just get a PET scan instead of a CT scan to just rule out that option.  The doctors ordered an Urgent PET scan for the next day and a few hours later we got the dreaded call. 

It showed activity in lymph nodes in the abdomen and the neck.  It seems that the area in the abdomen is a different location then the previous effected lymph nodes and is near the aorta, meaning it can not safely be biopsied.  However, they can biopsy the lymph nodes in the neck and will be doing that tomorrow or Wednesday.  Hopefully we will have results within a few days, or by the end of the week. 

Our Oncologist is on vacation til the 7th, so we have an appointment with him on the 10th to discuss a likely treatment plan, given the biopsy comes back as we all anticipate it will.  It is possible that he will start chemo on the 14th, and would likely be the same treatment regiment as before, but we will cross that bridge when we get there. 

I am getting induced either this Friday the 4th or Monday the 7th if baby girl does not come prior to that. 

We are doing our absolute best to trust in God's timing.  We do not understand, and don't expect to - so we have to have faith, which is easier said then done.  Some moments we are hit with the reality of it like a ton of bricks and have to pray for strength minute to minute for hours on end.  Other times we are blessed to feel God's peace releasing the weight on our shoulders momentarily. But regardless, we know that God will provide for us in this time, and will carry us when we are too weak to walk.  

Please pray a few specific prayers with us in this time: 

-Pray for a miracle that the biopsy comes back negative for cancer!  We are believing in this prayer right now.  It is unlikely, but that is what miracles are!  Lord have mercy on us. Allow us to be a testament to Him by being living proof of a miracle! 

-Pray for us all to be able to still feel the joy and excitement of awaiting the arrival of our precious daughter. 

-For strength and peace for us and our families. 

As for everyone who so kindly has offered to help us in some way I will be starting a care planner here on CaringBridge.  Last time I had a hard time asking for and accepting help, but this time we are in a whole different situation.  With a newborn and lupus, I know that the ONLY way we will get through this is with God and help.  Once we know what is next I will fill in the care planner (can be found above next to "Photos", called "Planner") and will make a post about it. 

As we are trying to regain joy and excitement in this short period of time before reality really hits I'm going to wrap this up.  Talking, thinking, typing about it gets me consumed in it, and it's just too much to think of right now and we are trying to focus on the blessing of life we are about to experience. 

Thank you so, so much for your support and prayers. God bless you! 

Sunday, June 29, 2014

Life after Cancer - Summary of the past 3 years

This (previously drafted) post was supposed to start some updates/journaling of our life after cancer.  So many think that once the cancer is gone that life just gets back to normal.  And for some, that is the case, but for most we still carry it's effects around every day.

I have deleted a large post that was starting to describe it all, but at this point it seems irrelevant.  I think I can sum it up much quicker so I can move on to our current situation back in the Journey of the Big 'C'.

Basically 3 days after we got the wonderful news that Brandon was in remission, my body started acting up dramatically.  I got very sick very quickly, fevers, tremendous body pain, headaches, nausea, and pretty much bed ridden for a few weeks.  Blood work showed something Autoimmune going on, and I was given a burst and taper dose of steroids to 'reset' my immune system.  It worked briefly.  After 8 months of rheumatologists, hematologists, primary care doctors, tests, biopsies and ultrasounds I was finally diagnosed with Lupus in March 2012.  

Ever since we have been playing trial and error with medications to find the right treatment plan so we can live a fulfilling life with chronic illness and pain.  It has been challenging and life limiting to say the least, but maybe some other post I will go into more details of our battle with Lupus.

During that time our roles of patient and caretaker quickly switched to Brandon caring for me.  Yet, the effects of chemo and all the other medications were still taking a toll on his body.

Since completing chemo, Brandon stayed on a preventative treatment called Avastin.  This drug, new to the market in 2006, has shown great results in aiding treatment of Stage IV Colon cancer and some types of Lung Cancer.  Due to it's newness, not many people have been on this medication long term or solely as a preventative treatment, and many of the effects are not known.

Since remission Brandon has been diagnosed with Hypothyroidism and Gastroporesis.  The Gastroproesis causes a lot of GI disturbances and limits the types of foods he can eat, such as no raw fruits or veggies unless pureed to make digestion easier.  Super fatty and greasy foods are also difficult to digest.  He has a medication that he needs to take 30 minutes before meals to aid the stomach in digestion.  We have been fortunate that he has been able to get away with taking it less frequently, except shortly after his Avastin treatments when it typically would trigger GI upset.

So, in the almost 3 years of remission we did our best to live life with 2 chronic illnesses with many limitations that other people in their early 30's don't have.  We prayed about starting a family - a very difficult decision to have to make when you have faced Stage IV cancer and have Lupus.  In February of 2013 we felt God give us a sense of calm to give it a go, and in November we were thrilled to find out we were expecting our first child!

I'll leave off here - and will shortly update specifically on the current situation we are facing with the cancer returning based on a Pet scan done on Friday the June 27th.