It's not happy, so we just have to be happy

It's been a few weeks - good weeks  - of recovering from that last brutal round of chemo, catching up on things that have been forgotten during the last few months, a regular routine - no hospital visits - scheduled or emergency.  The times between appointments or treatments - when Jacqui is looking well and feeling well and hopeful are the times that we can forget for a little while and pretend that life is  "normal".  

The funny thing is when Jacqui is feeling so good and looking so good, it's hard to imagine that there is really anything bad going on behind the scenes at all - people say this to her all the time.

But an appointment is coming and before we go to see the doctor, we need to sit down and talk about:
- what questions we want to ask
- what questions we don't want to ask
- all the types of treatment, alternative treatments, alternative medicines, clinical  trials
- when she can go back to work, can she go back full time

I don't want to forget anything important - so I make lists on my phone, in my journal, in my notebook at work, on the notepad on the fridge, on my hand to write down somewhere else later.  And I read up on Synovial Sarcoma, I read things that make me hopeful and I read things that make me cry.

These weeks as we've celebrated births, reunions, birthdays, graduations, weddings, showers, mother's day, sunny days, Peter and Ty went to NYC - each event - though I try to stay in the moment, sometimes my mind wanders to "what if's".  Most days are good, a few aren't. 
 
And today was the appointment - the usual routine:

- check in

- wait

- blood test

- wait

- see the nurse, get vitals taken

- wait

- and then the doctor comes in and we dutifully ask all the questions on our list

- really there's not much to say other than when we asked if he thought the chemo was successful, he said she looks better and feels better so sometimes that's better evidence than what's on the CT scan

- there are no answers

- basically we have to wait

- until they do the next CT scan in July and we get the results 

At that point we'll see how things are and make a decision on further treatment - different chemo, surgery, radiation - who knows?  It's such a rare, unknown cancer - I find myself envious of those who have common cancers - with tried and true treatments - that's just how weird this gets.

Today he used the phrase "advanced cancer" and other related, suggestive phrases - that's hard to hear. It seems like all there is to do right now is to wait and be patient.  As I just said to a friend, it's not happy, so we just have to be happy,  sooooo......

 - we leave Friday....

Where there's life, there's hope

Quick update. 

Last Monday we had Jacqui's appointment to get the results of the CT scan she'd had.

The results were not really what we wanted, but I am not really sure what we were expecting either.  So, to sum it up quickly, she had a CT scan in January, (the one that showed the tumors were growing and surgery wasn't an option) and then a PET scan in February, which confirmed this and showed that they'd grown a little more and then the latest one, that showed that although the spots have shrunk, they are still bigger than they were in January. 

So the good news is that they have stopped growing, and in fact have shrunk, but the bad news is they are not gone.   Now what?  Well her Dr. said they'll now treat her cancer as a chronic disease, they'll monitor her regularly with X-rays, CT scans and that type of thing and then treat her as needed when and if there are changes.  Possibilities are different types of chemo, radiation, surgery...miracles.

She had one last round of chemo this week (this type's effectiveness decreases with each round and the side effects increase with each round - so they didn't feel any more than 4 would be worthwhile especially since she's had so much trouble with side effects already).  True to form, it was very hard on her and it didn't make it easier knowing that it's less effective but still as hard to take. 

We were all a bit distraught at the results of the CT scan, but two bits of hope came during the week.  the first was when we were leaving the hospital on Monday, she bumped into the man that she had shared a room with during the last round.  He was diagnosed with a similar type of cancer 11 years ago and was told at that time that they could only treat him palliatively, no real hope and now it's 11 years later - not all easy - but as he told us when we were leaving last time "Where there's life, there's hope".  The other was when the Dr. came in to check on Jacqui during chemo and when she expressed some distress, he said, the news is not bad, the chemo is working, and we still have lots of options.  Little things, but little bits add up to greater hope. 

One day at a time.  We were talking about that the other day - it's much harder when you have no choice but to live one day at a time - when it's not just a good philosophy for how to live your life but how you have to live your life.

We have her home now and she is relieved to be done the chemo, and because hope is hard to lose - she is looking forward to feeling better again, getting back to work, making summer plans and growing some hair. 

And then we'll see...