I'm so excited I can hardly contain myself!!!!!!

We're going HOME!!!!!!  Saturday!!!!!!!!  Tomorrow we meet the attending physician for our exit meeting and then Jim gets his line pulled.  Oh my God!  Can you believe it?  Finally!!!!!  Pugs here we come!  So we got some packing to do.  We need to set up an appointment to see Jim's Oncologist in Spokane next week.  But I think we have everything else in order.  The house is being cleaned.  The backyard is getting picked up.  The pugs have been groomed. The hotwater heater is being fixed.   Now all we have to do is pack up the car and go.  I hope we've thought of everything.  If anyone can think of anything that we may have forgotten please let us know.  We'll want to see everyone soon so keep us in mind for get togethers.  Looking forward to seeing everyone.

95% chance that we'll be leaving here at the end of next week

We met with the doctor today and Jim convinced them that he was ready to go home. We had met with them on Tuesday and the doctor said that Jim needed to drink more so he could get off hydration.  He also told Jim that he needed to consume more calories.  Funny how your wife can say the same thing but when it comes from a doctor you take it more seriously.  So, now Jim is completely off of hydration.  Yippee!    We went to the Nueological Oncologist on Wednesday.  Talk about a huge waste of time.  No tests, no chemo, no nothing.    I was miffed.  So, we need to go back to see him on Monday to get Jim's spinal fluid checked for abnormal cells and to get a round of chemo.  Today the doctor said Jim may need to get another MRI next week.  He's still experiencing discomfort in his lower GI track.    He's done with the steroids now.  They're talking about the possibility of  doing an endoscopy.  They're saying that there may be some other sort of infection.   Someone suggested probiotics, so Jim started taking that and he started taking metamucil again.  So, hopefully that works. .  We're doing everything we can to get out of here.  It's hard to believe we could actually be home in Spokane a week from today.   Jim said he was experiencing a little bit of anxiety about it.  I know what he means.  Even though, I've been working on getting the place ready for us when we get back, there's a lot to do to get us there.  And what will the "New Normal" be like?  I only hope that we will have a new zest for life.  Not everybody gets second chances.

Avgolemono!!!!!!!

I've been meaning to tell you about the first thing that Jim craved once he could eat.  Avgolemono is a Greek Lemon Soup.  There's a restaurant in Freemont called "Costas Opa".  Jim had me driving to that restaurant everyday.  I'm not kidding.  Even though Jim came up with his own recipe and taught me how to make it.  I think his recipe is better.  I've offered to make it but he wants "Costas Opa's".   Sometimes I think Jim doesn't want to be a burden so he tries to make it easy on me.  I'm more of a driver than a cook.   Yesterday was another beautiful day.  We decided to go for a drive and we fell upon "Shilshole Bay".  Oh my God!!!  Wow!!!!  It was spectacular!    There were a bunch of boats in the water and a ton of people on the beach.  I've never been there.  It's located only minutes from Downtown Seattle.  Of course, we're surrounded by water but this was wide open and undeveloped.  Amazing for such a big city.  There's a tulip festival going on just north of here about an hour.  We've been himming and hawing about going.  I want to! But we have to be careful about crowds.  Today turned out to be another nice day.  Jim is at the clinic getting hydrated right now.  I'm hanging out at the neighborhood coffee house.  It's what I do. 

He continues to get better with each passing day....

Jim is down to a half a liter of saline now which only takes 2 hours a day.  Yahoo!  We met with Pooja , the P.A., on Friday and I asked her if maybe she could give us a "Release Date".  She's not willing to commit to an actual date just yet but said we would probably be leaving in the next couple of weeks.  We're going to be here for sure next week.  We have an appointment with the Nuerological Oncologist next Wednesday.  This is for the BIG TEST.  He will be withdrawing some spinal fluid to test for cancer.  So cross your fingers and say a prayer.  I really don't see how cancer could have survived that last bout of chemotherapy.  Today is another beautiful day here in Seattle and from what I hear from my friends in Spokane we have a lot to look forward to as far as weather when we get home.  And we are preparing.  Julie and Niryan,( Carol Vanhoff's sister and her husband) took two boxes of our stuff and Jim's walker to our home in Spokane.  A huge "Thank you" goes out to the two of you!!!!  I want to menttion someone else who has been extremely supportive throughout this whole process, Pat Soucy.  Believe it or not I've never met her.  She and Jim were good friends growing up in Massachusettes.  Just prior to all this "Hub Bub", the two of them connected and requested each other as "friends" on "Facebook".  She took it upon herself to request me as a friend and has been commenting on my "Facebook" page ever since.  It has been so nice since Jim has not been checking his email.  His focus is just not there.  And now I have a "pen pal" although I'm really bad about responding to "Facebook".  It's a "technical" thing.  I'm getting better though.  Your response to my blog has possibly given me the confidence to make "public" responses via "Facebook".  Well,  I think we're down to a daily countdown.  Jim & I are obsessing about the day we will be sleeping in our king size bed with our beloved pugs.  We've already hooked up with a potentially fantastic housekeeper who is going to "sterilize" our 1928 home as best as she can.  She will do just about anything.  She's going to take our oriental rugs to a cleaning company and she's going to take our pugs to be groomed.  Another Carol Van Hoff referral.  She's a problem solver allright.  Well,  I don't want to make this entry too long or you won't want to read them anymore.  So, until next time Thank you for your time and consideration.

Something I won't miss - TRAFFIC!

Man, this big city ain't for me...It took me 1 1/2 hours to go one mile to the pharmacy and back.  Granted it was at peak traffic time but really what's the deal?   Talk about stressful.  I'll be glad when we get back to Spokane.  Jim continues to get better with each passing day.  The Nurse said we should start to taper off the prednisone already.  So, each day Jim will get 5 mg less for about a week then he will be done with it.  He continues to have more energy.  His appetite is getting better but still not where I'd like to see it.  He needs to drink more.   We're not going anywhere until he gets off the hydration.  He's still getting a liter of fluid which lasts about four hours a day.  Yesterday,  I went into the showroom for a meeting.  It was nice seeing my boss and coworkers.  It's always a shift in mindset.  But it's good to mix it up a bit.  There is something satisfying about being independent.  Being a Caregiver all the time can get tiresome.  It's good to take a break and take care of myself.  Even if it's work.  I even made a trip to the mall and got myself a treat.  Last night, the Seattle Cancer Care Alliance had a special  dinner that I attended with a friend.  Jim didn't want to go.  I ended up closing down the place with five others.  We had a fabulous time.  This cancer stuff is like a sub-culture.  There is so much to talk about because everyone's experience is different.  Today,  I was on camera for a documentary that the U of W is doing about the Information Industry.  I was in the coffee house around the corner and they came in and asked me if they could film me on my computer.  Well, Of course you can!, I said.  So, now I'm famous.  Yeh, right.

I'm in love with another pug!!!!!!

His name is Mort....And Oh my God - he is the wackiest little guy I've ever met.  Carol Vanhoff suggested that I take her Niece's pug for a walk so I took her up on it.  He is hilarious!!!!  And such a LOVER!!!  KISSES LIKE CRAZY!!!!  He actually barks at airplanes.  He's a NUT!  We had a great time last Sunday.  It was 70 degrees out.  Just perfect!!!!  Anyway, he made my day!  As far as Jim goes he's doing a lot better.  The steroids worked!  We met with the new doctor yesterday.  I'm not sure if I explained how it works but we meet with a team of Medical Professionals - the Attending Physician, a Physicians Assistant or Nurse Practitioner, a Nurse, and a Scheduler.  The doctor and the PA rotate every month.  So, the new doctor was pleased with how well the steroids worked over the weekend so Jim doesn't have to get an endoscopy.  Yahoo!!!  They prescribed two more weeks of steroids and then they will start to ween him off of them.   More Good News - His hydration has been reduced to four hours a day.  He's really making an effort to eat and drink.  His energy has increased quite a bit.  He is making a lot of progress.  It's interesting to be a witness of such an incredible phenomenon.  The role I play is to make sure he's on track.   Being a Caregiver is a weird thing I think.  Some things seem effortless - you just do them because it's the right thing to do.   Everything you do is out of love for this person.  You genuinely want to see them get better.  You don't realize how all consuming it becomes.  I told a friend that I prayed that I would someday learn Compassion.  Oh the things I've seen.....To understand another person's pain and suffering as if it were your own is what it's like I think.  Jim and I were  reminiscing this morning about his experience in the hospital.  I wondered how much he actually remembered.  What a relief that we made it through that trying time.  Reliving that experience now that it's over we can look back and see how much grace played a part.  We are just so grateful for every day.

Been slackin'

Not a lot has transpired since I wrote last....  The doctor did come in and talk to us on Wednesday but she said she wanted to wait and see how he does.   She would revisit us again on Friday which was today.  Since Jim is still struggling with the diarea and since he has no appetite and no energy she wants to try the prednisone.  But this doctor does not dole out steroids in any generous fashion.  She prescribed two 50mg for over the weekend.  50mg is nothing.  Jim has taken 100mg at a time as a part of his chemotherapy regiment in the past.  I'm glad she is cautious about steroids, doctors should be as far as I'm concerned.  But if this can give him a "Kick Start" to getting an appetite and some energy I'm all for it.  It should also help with the diarea.  This is how they treat that disease I was telling you about - psuedo graft vs. host disease.    But if it doesn't work then they will have to do an endoscopy to check to see if he has an infection.  So, I really hope the steroids work.    I don't want him to have an infection.  Who knows what type of treatment he would have to go through for that.  Jim is still getting hydration for 6 hours a day at the clinic.  And I have to tell you this clinic is first class.  We have an incredible view of Lake Union.  I sometimes wonder if Seattle is the Boat capital of the world.  This lake is filled with sailboats, yaughts, skulls and the like.  At the apartment  I've developed several friendships with the other Caregivers.  There is a comradery amongst us.  Even though every person's story is different there is a common bond between us.  

I may have jumped the gun....

It all depends on how well Jim does.  He's sooooooo tired.  He's sleeping quite a bit.  Understandably so.  There's a fine line between being compassionate and letting him sleep and being somewhat pushy to get him to eat or exercise.  I talked with the nurse today to find out what was expected at this point.  She signed him up for some physical therapy for tomorrow.   Energy begets energy.  The Nutritionist came in while he was being hydrated and discussed different possibities of food he could eat.  It all goes hand in hand.   She addressed the diarea and suggested some things to help.  She also told us of typical types of food that people who have been through this find better, like teriyaki, BBQ sauce, etc.  I went shopping and bought a ton of stuff that he should be eating.    The diarea could be a sympton of what they call psuedo graft vs. host disease.  Normally people that get someone elses cells gets graft vs. host disease but this is like mocking that type of disease.  They treat it with steroids, which would also help with one's appetite.  We have a meeting with the doctor tomorrow.  I think shes going to prescribe those steroids, probably prednisone.  Prednisone can make one crazy.  Hopefully Jim can endure the craziness until the diarea is gone and he gets his appetite back.  In spite of all this, our nurse told me that it is still possible that we may be home home in a couple of weeks.  Keep your fingers crossed.  A couple of prayers couldn't hurt either.  We would really appreciate it.  Oh and by the way,  if you sign up to be a member of this blog you can have these entrees sent directly to your email.  Just an FYI.

Good News!!!!

Talked with the key doctor yesterday at the clinic and she told me that she had just talked with a patient that she treated with the same type of cancer that Jim had and she has been cancer-free for two and a half years. Unbelievable!!!!!  I'm so excited!  Up to now, noone has even mentioned that they had ever treated Intravascular Lymphoma  before.  It is such a rare type of cancer that most people have said they've never met anyone with it.  So, I'm so happy.  More good news.....  The nurse at the clinic said she didn't see why we couldn't be going home in a couple of weeks.  Oh my God!!!  Home Home - Spokane.   I think I was in shock when I heard that.  I need to wrap my head around it.  I know it may seem weird that I would be unprepared but two weeks is just going to whip by and I need to pack up everything.  I think I'll be shipping a lot back to Spokane.  So, I need to get boxes and make a change of address and so forth.   I can't believe it.  We'll be hanging out with the pugs before ya know it.  My heart is very glad.  It just so happens that I called our housesitter yesterday too.  She said she found an apartment already and she wants to move into it.   She basically told us that she and her grandmother would juggle the time spent at our house.  I have to admit it freaked us out when we heard this.  We were trying to come up with an alternate plan but it's only going to be a couple of weeks right?   Her grandmother promised that they would make sure the pugs were taken care of.  The first day at the apartment went well.  No problems whatsoever.  Kinda boring actually.  Jim is so tired and all he wanted to do was watch fishing shows on TV which is more than he's wanted to do in a long while so I guess that's good.  I know he will be tired for a long time.  He's actually sleeping right now.  He needs to eat more.  It's really hard for him.  Like I said before, everything tastes like cardboard and he just doesn't have an appetite.  He needs to be eating pretty regularly before they will release him from here.  He's still got that dreadful diarea.  It's hard to believe.  He's been on that Immodium for four days now.  That chemotherapy just did a number on him.  But the diarea can cause one to get dehydrated.  So, we have to go to the clinic today and get hydration through an IV.  The insurance just approved home IV so tomorrow I will be trained on how to do that.  The hydration will be delivered to our apartment this afternoon.   I'm hanging out at the local coffee shop while Jim sleeps.  He has his cell phone.  He can call me if he needs me.  I'm only a block away.  We don't have internet at the apartment.  Anyway, I better go...gotta get hydrated.