The C Word - Tumultuous Tumors

It’s been rather frustrating on several levels this month.

First, we are trying to convert our medical insurance over.  With George actually retiring at the end of this month and going on Medicare, I need insurance.  I applied at the end of February, but have yet to be approved.  Under George’s retirement plan, my choices for self-paying insurance are six variations of Blue Shield.  I do have a qualifying event and, according to the middle-man I will be covered, getting the right paperwork filed to get it done by the first of April has proved trying!   It may be just a single word or two that needs to be changed in the qualifying letter, but until we hear back from them, we are sitting on a bubble waiting! 

Then, for the first time ever, the current insurance company didn’t approve the CT scan on time.  They apparently needed some questions answered.  As a result, we had to push the date for the CT scan a few days and thus had to push the oncology appointment out as well.  Not sure why the need for additional questions - - just insurance companies being insurance companies and trying to dictate the need for testing I guess.

George had a negative reaction to the contrast solution.  He spent a lot of time in the bathroom and in some pain is it moved through. He believes he is also now lactose intolerant.  He tried Lactaid but had the same reaction as milk.  There are certain things he can take that have some milk in them and don’t bother him.  But cereal with milk… no no.  Ice cream - - no no but he will probably just not have it very often.   So sad that the things he loves are gradually off the table, literally.  No steak, little cheese, no milk/cereal, no pizza.  Not that he can’t eat them – but there are definite consequences when he does.

And then there is today.  The oncology appointment.  While the results weren’t a total surprise, they were disconcerting.  When Dr. G says, “Well, we may not want to take a watch and wait approach anymore”, it takes you aback.  The reason for this is the fact that some of the spots on his lung are now big enough to biopsy (meaning they are now bigger than 1cm).  A biopsy may be in order to determine if they are, indeed, related to the PMP.  The ones in his belly are growing – which is not unexpected – but are growing at a faster rate than the previous scan-to-scan results.  He has one that is slightly larger than a golf ball (a bit over 2” in diameter) and another just slightly smaller than that.  The growth on several of the tumors was ½” or greater over six months time.  Prior to this it was more like ¼”. 

In reading the scan, it also appears that they do see anomalies in between the loops of small intestine and some that has adhered to the abdominal wall. 

And then, we worry, if this is what it DOES show – then what are the things it does NOT show because we know that is always the case.  There is more than shows up on scans.

Dr. G says we need to plan to get more information in order to make a more definitive plan.  What, exactly, does this mean?  For starters, he will go back to Foundation One to see about an additional test being done to the tissue samples they have.  I think it was called a Tumor Mutation Burden (TMB).  This might be able to tell us if some sort of immunotherapy would slow or stabilize.

Secondly, he will gather together information from the scans and also Dr. B and take George’s case to the GI tumor board next week.  He will discuss the case with the other doctors and get some take on what they feel can be done.  Do we try to do a biopsy on the lung tumors?  Do we plan for a debulking surgery (also known as CRS)?  Do we try a systemic chemo or immunotherapy to see if it stabilizes things?  What’s the best course of action?

On our end, we will have to weigh any answers that come our way.  We may decide to seek another opinion and have records sent down to the PMP specialist in San Diego to see what he says. 

Our decision on what to do will have to be carefully thought out.  There will be definitive pros and cons to each and every “solution”. (Of course, that is assuming we have more than one choice.)  I am sure it will be a difficult decision for us to make. 

I am trying to remain positive.  It is sometimes not easy, for sure.  I am incredibly grateful that we have avoided the emergency room for eight months.  But I am reminded that it has been 20 months since the last surgery – and that is how much time we had between the first two surgeries.  We keep waiting and wondering not if but, when will the floor fall out from underneath us. 

No options are appealing.  Biopsy? Surgery? Chemo? Immunotherapy?  Do nothing?  One or more of these will be our choices to select from.  Every one of them will affect us in some way or another.  We must prepare ourselves for whatever lies ahead.

More praying…. More thinking…. More hand holding… More talking… More praying…

The C Word - Me, Myself and I

Me – This is who everyone else sees me as.  They look at me and see a woman of faith, a strong woman, a courageous woman.  They see me as mom or wife or sister or aunt or grandma or friend.  They see me as creative.  They see me as someone who loves everyone (or almost everyone) she meets.  Someone to rise up and meet the challenges of the day.  They see me as someone who loves to organize things – except for organizing things in my own home which George will attest to.

Others are watching me.  I know this.  They wonder how I do it.  They may not consider themselves strong or courageous, yet I know many of them are. 

This is the me that I let others see.  Chin up, smile on, Go get ‘em girl.

Others see what I want them to see.

Myself – This is the me I am.  I am someone with a strong faith.  I do believe that God will take and use all the crappy stuff going on and use it for good.  I do believe that I can handle whatever life sends my way.  I may not like it.  But I’ll handle it.  I don’t consider myself strong or courageous – but those are likely components of faith. 

I am mom and wife and sister and grandma friend.  But these days I feel more like caregiver, trying my best to balance the needs of the ‘patient’ but still trying to maintain some sense of those other things.  Some days I am more successful than other at that. 

I am creative.  My sewing room is my haven when I can get to it.  Since I don’t have an office to go to, this is the next best thing.  I only have one problem  - there aren’t enough hours in the day for me to get all my projects done!  I tend to figure out what I want to do and work on that one project until it’s done and then figure out what to do next.  I put on an audio book or music and go upstairs to just be and do what I want for periods of time. 

I have been told I am WYSIWYG – “wizzywig”.  What you see is what you get.  And that, for the most part is true.  Yet, I do not show my whole self to everyone. 

I – The “I” is hard.  “I” feels selfish and self-serving.  But “I” is reality. 

I am angry that cancer has entered our home and has taken it hostage.  No matter what we do, it is ALWAYS there, lurking in the shadow or stomping it’s ugly self on top of us.  It affects every decision, every plan we make.  It has done this for three and a half years.  No matter what we think or do, “it” is on our minds. 

I hate that it interferes with absolutely everything.  Every plan has to have a back up plan.  A “just in case” plan.  I have to be able to cancel things at a moment’s notice.  I have always been very flexible in regards to making plans – but this disease truly tests that ability. 

I hate that it has robbed us.  It has taken George’s physical stamina to do all the things he loves to do.  He no longer does woodwork.  He no longer does yard maintenance.  He is no longer able to do so many of the household repairs and tasks that he used to do.  He can’t go out and do anything that requires a lot of walking or being on your feet.  He is relegated to his recliner with his iPad in tow for the majority of his days.  

It has robbed us of vacations and holidays.  A year ago, when I planned on leaving work, the hope was that we would be able to just get away for a day or a night here and there and get out on mini-adventures.  That never came to fruition and, as time goes on, our world continues to shrink.  It has taken away the golden years we were supposed to be able to enjoy and have fun.  Our wedding song was “Grow Old Along With Me” … the best is yet to be.  We’ve had 15 years together – but the last three have been anything but the best.  And the grow old along to me, sadly, is not likely to be.  I hate cancer!

I hate that as we make medical/health insurance plans and plans for taking pension or social security, that the one thing on George’s mind is that I will be financially okay when he is no longer here. Rather than think we can make plans to do things together – the plan is for me to be alone… again.  Four years ago we were looking at whether or not George could afford to retire – would the two of us have enough to get us through to the ends of our life.  Now, instead of “for two” it is “for one”.  Don’t get me wrong, I am glad that I should be able to be financially stable (unless something hugely traumatic healthwise happens)… but, just as with my first widowhood, having money in hand does not take away the sting of losing a spouse.  Nothing can replace that. 

I fear what lies ahead for George, for us, for the family.  Having access to knowledge of what shape this cancer can take, we are all to aware of the possibilities of what is coming down the road.  We don’t know when and we don’t know exactly what will happen as every case is different.  But, from what I’ve seen, it’s not an easy road ahead.  What we are dealing with right now in this moment is a cake walk compared to what’s ahead. 

I fear how the kids and grandkids will handle whatever lies ahead.  Will I have the strength and courage to not only comfort George but also the family. 

The “me, myself and I” live in conflict with one another.  The “We” that this trio makes, creates a roller coaster of highs and lows, twists and turns.  “Myself” is the middle man, trying to keep things at an even keel as much as is possible.  As I said, some days are easier than others.  “I”  rears its’ head as it did last night, creating havoc and causing insomnia.  It doesn’t happen often, but it does happen.

I cannot and will not let “I” have the last word.  I allow myself a short-lived pity party – and then I go back to being “myself” – for faith is what grounds me.  Faith will define me and serve a much better purpose.