Monday, April 8, 2013

super glue

The drama of this week!

Here is a little breakdown of some events:

Monday.  After three days on the market, a ton of interest, and too much cleaning, we get an offer on our house.  I am happy with the buyers, I always saw a young couple here. 

I talk to my nurses and nurse practitioner.  I explain that I am having severe anxiety over the new cancer.  I am not feeling good about the injection trial since I have cancer in other places.  I make a case for doing IPI again.  My doctor is out of town this week.  He will check in in the middle of the week.  I explain I can't find a PD-1 trial in the West that I qualify for (I had been researching and calling around.  Very time consuming).  They mention the one in Florida that my doctor has talked about with me before.  We had reasoned that with nothing new showing up (we didn't know about the new tumors yet) this may be extreme (it will require a trip to Florida every other week for up to a year).  Well now that there is some new growth, I am seriously considering it.  It is with the PD-1 drug that I tried to get in Oregon.

We get the inspection report back from the house we are in contract for.  There are some major repairs we were not aware of.  I was surprised, and got a little nervous.

Tuesday.  I get a hold of the doctor in Florida who is conducting the PD-1 trial for people who have had dose limiting side effects from IPI (that would be me).  I give him some background info and he thinks I may be a candidate!!!

Wednesday.   We fax some of my records to Florida.  Or try, rather.  The faxes were not making it through and I had to keep bugging people.  I hate it when I get that way, but it has to be done. 

Thursday.  Josh convinces me to do something fun for spring break (tragically, we had a beach house on the Oregon coast all lined up for this week with my sister.  I have almost sworn off ever planning a trip again, as they all seem to get ruined by cancer).  My kids had been with their grandmas a ton while we were showing the house, and I hadn't seen them enough.  I was happy to be in the mountains again.  But all the time I'm stressing.  Checking my email all the way up the lifts.  Waiting for word from Florida.

Friday.   Florida gets my paperwork.  My heart sinks when the doctor explains a blood test that was ordered a couple of weeks ago came back to show I was HLA A2 negative.  The type that is not allowed on their trial.  He is in the process of amending the trial to include those of us without this antigen.  But that won't take place for a few weeks, and then there are 5 people on the waiting list before me.  I can't get on the waiting list until I am seen by him, and even then there are no guarantees, but he is guessing if I qualify I could start in about 6 weeks.  As much as I tried not to get my hopes up, this was a disappointment followed by great and noisy sobs.  So, so close!!

I decide to check my armpit tumor to see if we can wait 6 weeks.  HUGE.  Feels like a golf ball.  When did that happen?

I go to bed, but feel nauseous and in serious pain.  These kind of symptoms will drive a cancer patient crazy with worry.  I take everything I have in my medicine cabinet, which is next to nothing as I have packed everything away.  No pain pills, so I tough it out.  Even with anti-nausea meds I end up tossing my cookies.  I finally fall asleep around three.  Luckily, no problems since.  Most likely just a stomach bug or something.  Or a serious reaction to stress.  I would not be surprised.  One of my biggest anti-cancer lifestyle goals over the last two years has been to minimize stress.  Not succeeding in this right now. 

Saturday.  I wake up early to get the house ready for the inspector to do his thing at our house, and for our buyers to come back and get the full report.  Keeping your house spotless is kind of a joke.

We hear back from our sellers that they are willing to offset only a portion of the repairs.  This has me in a complete meltdown.  I can't understand why this could not have been a smooth situation, given everything else we are in the middle of.  We now have to decide if we go through with this, knowing we are going to have to fork out the cash we were going to use on some necessary and some cosmetic changes.  But if we don't do it, we did just sell our house (we didn't really think this out so great, did we?), and there is not much on the market right now.  And location was our big thing.   It is in a great place for the kids...  We have to respond by this afternoon.

So, you know.  Just life and death decisions over here.  Just deciding what to do with all our money.   Everything up in the air.  All this week.  And it seems only to be escalating.

The crazy thing is, it looks like I'm holding it all together.  But honestly I feel like these days are all just jimmy-rigged and could fall apart at any moment. 

Somehow it hasn't happened yet.  And maybe if I can hang on long enough...

15 comments:

  1. Wow, just wow. Prayers for sure. You guys are dealing with SO many things right now. I think about you often and my prayers continue for you. If there is anything I can do please don't hesitate to ask. I know you have lots and lots of friends/family, but consider me one more. You are holding it together well, and even if you do fall apart, you have people there to help you put it back together. Love you and your example!

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    1. Thank you Jenn! I will count you in. :)

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  2. I think Jenn said it best...WOW! Hoping God's plan for you will be made evident soon. As always, He will have impeccable timing! He isn't a 1st hour God, he's an 11th hour God but he's always there! Sending our love, concern and prayers!

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  3. My anxiety levels are rising just reading through this! I'm so sorry Alisa. Sometimes I wish things could just work out perfectly for once,that thing would stay out of the air and firmly on solid ground, but this is not the way of things in mortality. I'm so, so sorry. You'll hang in there, because that's what you do best.

    Thanks for keeping us up to date. Best of luck on the house thing. I hope it all works out for the best.

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    1. Too true, not usually the way it goes is it? You will have to come see this house and tell me what to do with it next month.

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  4. You do seem to be holding it together amazingly well considering all that is going on. I am praying hard for the PD-1 thing--I hope you have some answers soon.

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  5. I have tons of tools and the skills to go with it if you took the house!! Homes can be repaired! Lots of skilled labor can come free. We all know people. We are all here for you!

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    1. I hear you are good with a tractor...I'll keep that in mind!

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  6. I think you are doing better than you think you are. I am probably on the anti-Pd1 trial you are looking at....or at least an arm of it...2 years and more than 3 months in. If you have questions...I will try to answer what I can. You ARE doing better than you think you are. Hang in there. C

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    1. I have read your blog in the past. I will message you some questions I have about the Pd-1 trials. Love your results!!! Gives me hope.

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  7. I've been thinking almost steadily about you and Josh since Sunday, and pray for the right synapses to fire in the doctors' minds to find the right next step. I love you.

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  8. Love, hugs, and any glimmers of comfort I can send your way dear friend!

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  9. Hang on! Yes, keeping your house spotless is a joke. Keeping my spots from molding is enough to stress me out. Didn't our teachers used to say about tattling- "don't come to me unless it is life and death." Yeah, most of us don't have to face the time when it really is.
    You are such a capable and strong person.

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