Life as we know it…. day zero, cycle one.

All last week I felt like I was leading these two parallel lives… one half of my heart and my consciousness was preparing for my new chemotherapy, and the other half was diligently trying to pretend that this was just another very busy mama week.  Which I loved.  Danny was the student chair for a big invitational golf tournament… to benefit the Allegro Foundation.  Somewhere on the internet is a link to a video of a speech I gave at their Ambassador’s Ball a few years back…. maybe Esther can find it?

The Allegro Foundation provides movement education to hundreds of kids with physical and intellectual disabilities…. Danny is NOT a golfer.  So his speech (which admitted this fact) was truly wonderful.  I have a video, but I need emily to assemble it and teach me how to post is… The golfers laughed so hard, Danny had them all in the palm of his hand.  ALL DAY.  He rode around the tournament in a golf cart meeting and talking to the players, including important Charlotte business guys, current and former professional athletes, all sorts of folks.  I wasn’t with him for that whole middle part of the day ,  his RN Delacey was on duty for the majority of it (but I DID see his speech 🙂 )

But even though Danny isn’t a golfer, he is the most amazing “people person” ever.  He has an uncanny ability to remember people’s names, long after even just one brief introduction.  And he had done his research about many of the players who were there to support Allegro, so he was able to chat confidently with people that I would have been seriously intimidated by.  It was such fun to watch…

Back to the rest of the week…. knowing it was the last one before my first chemo, I wanted to better address the lymphedema issue.  See that little folded sleeve up there?  For several years, if i was meticulous in my lymphedema management, I could wear that sleeve on my arm during the day.  Then came more cancer and the blood clot and …. no more sleeve.

 

 

All this wrapped around is what we have now.  Rewrapped twice a day as it slides down or gets painfully tight if my arm has been hanging down and the swelling is worse, or if it gets totally soaking wet

 

Did I tell you our dishwasher and clothes washer both died?  They have now been replaced, (and it’s crazy how hard it is to have something installed on a saturday…. they would have been happy to DELIVER them, and leave them right in the middle of my kitchen and laundry room, and then send somebody to install them in 10 to 14 days.  HA!  True confession, (and I NEVER do this….) I used the “I have cancer and I am starting chemo, yadda yadda….  ” and it was amazing how fast they found someone who could fix it.

But anyway, this lymphedema wrapping this is a pain,pain,pain.  Lymphedema plus blood clot plus growing tumor equals a big problem.  There are great user friendly solutions, but of course we want our medical insurance to pay for them, and the closest in-network place to buy these things is in Winston Salem.  I had long been planning going up there, getting established with the lymphedema products store there and getting to see Betsy at the same time, but obviously that’s just not going to happen for now.  If I COULD get back and forth several times (for measuring, insurance pre=approval, getting prescriptions and letters of medical necessity, picking up, etc.) this is my dream sleeve:

 

http://solarismed.com/introducing-the-tribute

This thing is called the Solaris Tribute.  Instead of wrapping layers and layers that shift and move, you just strap this on and go.   Plus my lymphedema has now spread up to my shoulder, and this covers that.  So someday soon I am hoping to feel well enough to get the process started.  It would make things so much easier….

 

But meanwhile, we just keep wrapping.  boxes and boxes of bandages come in the mail.  It’s way more fun when flowers come in the mail….

 

 

I guess I should tell you about the latest with the cancer…  we had hoped that one last test would show that my tumor was sensitive to some fancy superdrugs.  No luck.  I was so disappointed, Pulling the research study about that protocol that we had wanted so much out of my notebook and throwing it away made me cry for almost an hour.

 

Oh well.   So here is the email i sent to family after I sort of calmed down

 

 

Backing up… the initial plan had been to do a big excision of the tumor, under my arm and the side of my chest, and then clean up all the rest of the cancer cells with chemotherapy after 6 weeks to heal.  This would be the conventional, aggressive way to increase survival time.  They decided last week to change it up a little bit, thinking out of the box.  First of all, they didn’t want to ignore all those little cancer cells floating around for 6 weeks, since we know this is growing fast.  Secondly, they thought about this…. even the best of the chemo options have a low chance of working.  They might try something, and the cancer still grows, so they want to try something else.  But if the one big solid tumor is sitting on a shelf in a lab,we can’t use its response to guide our treatment,

so they decided, if I could handle the concept of having this ICKY THING under my arm, and be really flexible, and that I understood that this isn’t the standard way of doing things, that the would change up the plan.  They would send me for a 3D volume measurement of the tumor using a brachial plexus MRI and use changes in tumor volume to guide therapy changes.  Then, after 8 cycles of chemo every 3 weeks, if all goes miraculously well, we cut out the leftovers of the tumor

Sounded great, so yesterday I went to get the MRI.  Not helpful.  There is so much scar tissue, so much lymphedema.  the tumor is almost the same density as the surrounding tissue, and all the tissue planes are irregular and complicated.  Oh,and there’s more clot (remember the whole blood clot in the chest thing?  It’s spreading.)

When I got home from my 2.5 hrs in the mapping machine (although i didn’t know yet then that it didn’t work, that had to wait for the surgeon to call me) I found out that the last receptor test, that would have let me qualify for two new superdrugs that I had never had before, was “non-amplified” meaning that the drugs would be of no benefit.

When the oncologist was telling me this, he also said that even though the published research studies for all the drugs they are considering use the every three week plan,or sometimes an every 2 week accelerated schedule in really healthy strong people, for me we just don’t have that luxury, and we need to be on the every one week plan.  chemo works because it kills all the fast growing baby cells – cancer cells and others – and they do it in cycles because when they kill off a crop of cells, a new crops starts growing all together and they are all at a vulnerable phase all at the same time when they clobber them again… but you hope that the good cells have a chance to recover meanwhile.  Apparently we don’t have time to do that.

So, lots of discouraging news.  However, we are also looking at other novel ways of finding chemo options, I am hoping that chunks of my tumor will be on their way to Boston very soon for fancy testing….

we meet with the oncologist for final planning and to sign the informed consent papers and everything today, to begin weekly chemo early next week.

we are working on changing around dixon’s work schedule, but since he can’t just quit his job, I think my parents are going to come help.  We will figure that all out after the meeting today.

in other news, we are having both a dishwasher and a clothes washer delivered on Saturday.  and installed… one place said they would deliver saturday and leave the appliances in the middles of my kitchen and laundry room but that removal of the broken ones and installation of the new ones would be scheduled in 10 to 14 days.

Will update after the meeting.

esd

So with (unmatching, I couldn’t choose so I wore one of each) socks made by my sweet friend Dafna, Dixon and I went for my first round of new chemo yesterday.  Nasty stuff.  Nasty enough that I started this blog post on day zero and it is now day one.  Nasty enough that I was watching a video with Danny on my laptop last night, sitting up on the sofa, and I fell asleep so suddenly I dumped an entire mug of really hot tea down into my lap and onto my computer.  That is a BAD way to wake up.  Today the bigger problem is my mouth, but you don’t need those details.

I am going to take a nap now, I’m not even going to read back over this blog post to see if it makes any sense…

Thanks again for the love and the prayers.  Oh wait, you have to see one more picture, from my Sunday school class, taken 5 days ago.  I so hope that with my chemo scheduled every tuesday that by Sunday I feel good enough to go be with my class…..