Quick Check In

Hello.  I'm popping in for a quick update. :)

I thank you for your kindness in respecting our absence, even though I know how you want to be updated on Rob.  We've just been in that holding period between surgeries/chemo treatments, and starting back up the long process of looking for things we're hoping not to find.

Yes.  We've kind of been hiding.  And it's okay, because we needed to.

We've had a few little spurts of cooler weather, letting us know that Autumn is on it's way.  I have mixed feelings for the first time ever, of summer coming to an end.  I am not a big fan of summer at all... way too much heat for me!  But this year it also means that our time of being free of the medical world is winding down.  We have appointments set in September, October, November, and December with the surgeon, the oncologist, and different CT scans...  All looking for something.  Something.  That ugly something we've pushed out of our minds for the days of heat and humidity.  Reality is returning. 
 
When we last saw Rob's surgeon/urologist, he said that the cancer generally reappears within 1-2 years of the surgery.  That's why they'll be searching high and low, which we understand, and which we accept.  And we'll just keep taking it one day at a time, having faith no matter what, and staying positive.

Rob - Yate's Cider Mill, Autumn 2012

Rob is doing pretty well!  He really enjoys conversing with friends (old and new) on facebook, sparring back and forth, testing each other's wits on everything from music to cartoons to films to serious topics.  He is still sleeping quite a bit, sometimes napping after being up for a while, usually always after showering, and always for 2-3 hours in the afternoon.  He gets out of the house now and again, but he tires very easily.

His hair is continuing to fill in, much grayer then before, but at least it's come back and his thick waves are rippled up the back.  Nice to see.  :)

There are major changes going on with me and my job, which is part of why I've been a bit absent here, too.  I know not all of you are on facebook with us, so here is a brief post I put up last week on my page:
  
Cheri Glass Stein

August 21

"Today I gave my two week notice at work... and it took everything in me to hold back the tears until I got back out to my car.
My co-workers are my family... They have held me, prayed for me, loved me, and helped me through so much in the three+ years I've been there, and my heart is breaking that I've had to make the decision to leave. But I had to.
I'm not able to work enough hours there to be able to pay my way in the world when I'm alone and having to face "that time." It's not anything I want to think about, but I've been in a panic trying to get all my ducks in a row. I haven't even been able to recover financially from having to take the time off work for Rob's surgery and recovery, not to mention having a reduced schedule for the four months of his chemo. And those billing people have no sense of humor when I send them crumbs rather than steaks.
So hopefully, I will be able to breathe a little easier with a better job choice with a financial future, benefits, and a chance to advance within the organization. I will work hard, because I want to, and because I have to.
I hate having to make these decisions. I am going to miss my fellow queens at the castle (Camelot), their laughter, their love... and so much more.
They are so important to me, and I love them all dearly. ♥"

 

So, you see, I've had to make changes... ones I am wishing I didn't have to make.  But as I told my boss, I can't have my world fall apart, and then try to figure out what to do.  For my sanity, and peace of mind, I need to have things in order NOW, so that when the time comes where I will fall apart, I will be able to pull myself up and carry on, as hard and as awful as it is to have to even consider.  

 

But I know me, and this is what I need right now.

 

Rob jokingly commented under my post writing, "Planning on my sudden demise, baby ?. Umm, you take the first bite of food from now on !!"  

 

-- to which I replied, "And Robert, dear, though I know you say these things all the time to me in jest with that glint in your eye, I'm not planning any such thing... I am dreading it, fearing it, cursing it... and quietly crying away the thought of it most days - regardless of how I'm handling it on the outside. I do love you, my gentle, Piper man...♥"

 

♥♥♥

 

Rob's sense of humor remains tightly intact, and is part of what makes him strong, and lets him deal with all he's had to go through, all he deals with daily, and all that is to come.  Too much 'all' for such a gentle soul.

 

Well, I am off to bed.  It's my last week at my old job, and I have to be up in a little over 4 hours.  

 

I'm going to try to post at least every Sunday evening to keep you all updated a bit more.  In the meantime, go out and enjoy these fleeting days of summer, and prepare your hearts for the beautiful Autumn that approaches... vistas of rolling hills filled with colorful trees, crunchy leaves for walking on and jumping in, cider and donuts, sweaters, fireplaces, and those wind-swirling Winnie-the-Pooh days that make life so much fun!  

 

It's my most favorite season of all! :)

 

 

In Love and In Peace,

 

Cheri ♥ 

Hello there (I say sheepishly...)

Hello there (I say sheepishly...).  

I know.  

I've been absent for a long time, and I apologize.  I get messages and notes filled with curiosity and compassion and worry.  Rob's okay right now.  :)

We've just been enjoying a little normal wherever we can find it for these summer weeks we're living in.  There have been NO doctor appointments or tests and I must say, we are enjoying that even more.

We celebrated Rob's 57th birthday with a great Mexican dinner and two nights of gathering with some family members and sharing laughter and moments of that normalcy I mentioned.  It was really nice.  

Life has been full with MUCH going on, and we're just temporarily getting lost in the shuffle of days and nights and commitments.

Rob is doing pretty well!  There are many good hours in his days, but still a few bumps.  He is continuing to struggle with overbearing headaches that, when they come, last for days.  And our OTC drugs don't seem to phase the pain very much.  If these were from chemo side effects, they should have worn off by now.  But whatever is causing them, at times he is struggling to remain above the pain.

Rob is still sleeping quite a bit, taking at least 2 hour naps on the good days, more on days when he's feeling a bit 'off', as he puts it.  Some days he tells me that he just doesn't feel right, and can't even pinpoint exactly what he means.  I worry quietly deep inside where I don't even realize it sometimes.  But it's always there.

We've had some major difficulties with some of our "medical professionals" not following through with things like they should.  We're phone-tag-fighting (so to speak) trying to get Rob's urostomy supplies covered.  And it seems one of the other "professional's" staff sent LOTS of lab work during the chemo months to labs that don't participate in the program Rob's covered in.  So, yes, bills are coming in that we can only sigh at between the hair-pulling and frantic calls to put out fires.  When I get home from work, it seems I'm on the phone taking notes, and making more calls, and moving from pile to pile depending on what real voice I can talk to.  I'm getting pretty good at one-sided conversations with phone systems.  The only problem is that nothing is ever accomplished other than my rising stress level.

Argh.

But I am not trying to complain, although when I read this over, it's what I'm seeing.  And I'm sorry about that.  I try to stay away from complaining.  I guess, it just leaks out here and there when I'm full.  I've been really full lately.  *sigh*

In all honesty, though, we are thankful that we have these days, and we know what a blessing time has become.  I know that everything will work out for good, now or later, and I need to just rest in that.  I do have faith that all will be well.  I think the fact that I'm hardly sleeping is adding to my ability to stay sane... at least temporarily.  :)

I've more to tell you of specific things that are blooming and being put to rest, but as of right now, by the time I wrap up this evening and quiet our home for the night, I'm only looking at about four hours of sleep before another work day begins... So I will bid you all a blessed evening, and a beautiful weekend of smiles and laughter and most of all, love. ♥

You are all in our hearts and prayers, as always.

In Love and amazingly wrapped in Peace,

Cheri ♥    

Very Quick Update

Well...

I drove to the surgeon's office on Friday since I couldn't get anyone on the phone at his office other than a recorded voice...  I don't seem to have the patience lately for those voices that don't talk back or call back in the time frame I find I need.  (I'm trying to work on the "patience" thing...)

Although the doctor had not gone over and signed off on the report, a couple of the nurses collectively decided to give me a copy of it because it was NEGATIVE!!! :)

Under the words "negative for cancer cells" it did say that there was mild, acute inflammation.  This could be from a number of things, including cell changes from the chemo (which we knew could happen prior to starting the treatments), to an infiltration of certain immune system cells involving WBC's.  They said the doctor would probably be calling us to go over it, and to discuss a possible date change for the next abdomen/pelvis CT scan... so we will wait for those details, and I'll keep you posted.

Until we hear anything to the contrary, we are holding strong onto the NEGATIVE results, and relaxing a bit for the remainder of the summer months!

We will be celebrating Rob's 57th birthday on Tuesday, just happy to be in the moment!

Have a blessed week, and know how thankful we are for all of you!


In Love and In Peace,

Cheri ♥

Deep in Thought

Hi.

Me again.

Buried and tired and trying to stay above the water line.  It's harder on some days than others.

Rob is doing okay!  He's still sleeping quite a bit, but when he's awake, he continues to become more of who I know.  More of who he knows.  It doesn't always last long, but it is there.  His hair continues to grow  --  it's getting hard to see his scalp through the fuzzy growth!  And the color continues to return, back to that rich, salt-n-pepper darkness that's his alone.

Love the smile in the sky. :)

I sit here in the quiet of the night, watching and listening to him sleep, as I wonder why I'm afraid to call for the pathology results.  I just don't want to do it yet.  But I will.  Maybe tomorrow, I breathe, as I have for the last two days.  We're both hoping for good news so we can re-learn how to relax again.  Even if for but a while.

We have been enjoying the beautifully cool late evening breezes, in the 50's, and feeling wonderful!  Refreshing and soothing and calming and crisp... and so good to sleep with it swirling softly around us.  Darby and Gypsy are enjoying it, too! 

(For those who don't know them, Darby is our Eeyore-ish 70-pound black-furred snuggly protector.  And Gypsy is our canine-wanna-be feline, who is spoiled rotten by the Robster.  Of course.  He is a gentle kitten inside himself, so I kind of understand the relationship.  Gypsy really tries to be good, but hasn't achieved perfection in that area yet.  I'm getting frustrated at finding my books and magazines with little teeth holes in the corners.  *Sigh*  There's no changing a cat!)

Please keep your prayers going for any hurt you see or hear about.  Prayers are SO powerful, SO life-changing... and SO needed by all.

Well, I'm going on hour 20 of being awake, and sleep is tugging at me... hard.  So I think I'm going to give in and be carried away, at least for a little while.

I pray God washes you in His peace and grace.  You just need to ask Him to.

This forgiven child knows.

Good night. :)

Cheri ♥

 

Today's Appointment Update...

Hi!

Very quick update... I have to leave in 9 minutes, and still have to feed the dog and get ready!  Aaaagh!

The appointment went well, not as painful as Rob was anticipating, and quicker than expected!  (To be repeated yearly.)

The specimen was taken and sent to pathology, and we'll find out the results in about 1-1/2 weeks.  If all goes well, we are hoping to enjoy a quiet summer!

Our appointments will resume in September, October, November, December, and well into the new year for the oncologist, surgeon, CT scans, bloodwork...  They're going to keep a close eye on him, as the cancer can flare up, especially within the first 1-2 years.  

The surgeon, at our urging, shared that with Rob's cancer diagnosis, his odds of surviving 5 years are about 20-30 percent.  That's better than what we learned from the National Cancer Institute:  12-15 percent.  We'll take all we can get!

Rob's in good spirits, but still dealing with major headaches most every day now... most likely a side effect from the chemo, so we're told.

Okay, gotta run!

Love to all, and thank you for the enveloping prayers!

In Love and In Peace,

Cheri ♥

Surgeon Appt. Wednesday, July 17th

Hi, it's me again...  The woman who keeps disappearing from the blog-writing!

Sorry.

My job is taking a toll on me.  I work in a place without air conditioning, and come home soaked and completely sapped of any resemblance of energy.  I sit and look at my lists and piles, and the next thing I know, I'm waking up with a sore neck!  Sheesh.

I need to do some rearranging and changing and prioritizing.  If I can only stay awake!

Rob and I went to the Olive Garden for our anniversary dinner (having been blessed by family members...).  He's never been there before, can you believe that?!  He loved it and ate a LOT!  Afterwards, we went to a very cool frozen yogurt place called Cool Yo, where you fix your dessert from a wide choice of flavors and toppings, and pay by weight.  It was great, but Rob had a HUGE creation of treats, and paying almost $12 for two desserts can't happen too often!  LOL!  But he enjoyed it, and that was the point.  Mission accomplished (thank you H&D!)!

July 2013

Tomorrow we finally will see the surgeon  -  I verified the appointment this afternoon to make sure it wasn't rescheduled again.  We've waited long enough on pins and needles, so to speak.  The doctor will do a "urethral wash," which will be as unpleasant as it sounds.  But he'll send the fluid he collects to pathology to see if there are any cancer cells present.  If you'll remember, some of the original cancer cells were found in the urethra.  Some of it was removed when they formed the ileal conduit, but some remains that they will have to continue to check.  So, even though our appointment is tomorrow, we'll have to wait for the pathology report to come in.  It's okay.  We're enjoying the time we've had away from all medical professionals.

Rob is still sleeping for long periods of time, and still dealing with sometimes daily headaches.  There is more 'pepper' returning to his colorless chemo hair, and he said the texture is much better now, too.  Yeah!  It's so nice not to have all that poison coursing through him.  He hasn't had any bloodwork in some time now, so we're not sure exactly where that stands.

He's doing better on his blood sugar, but still overdoing it on certain foods.  I know, the Cool Yo wasn't the best idea, but it was needed nonetheless.  Needed.  And enjoyed.  :)

I hope you have a blessed day and a blessed week.  I pray you have air conditioning, or at least a cool place to be during the hot weather that is upon most of us.

Okay, I've got to go now.  I've fallen asleep and had to erase typos several times already!

We love you all, and so appreciate everything about you.  Thank you, as always, for your continuing prayers.  I can't even explain what a blessing that you are to us.

I'll let you know more when we do.

In Love and Wrapped in Peace,

Cheri  ♥

Patiently (sort of) Waiting...

Yes... 
I've been avoiding the online world for a little while now.  

Not a lot has changed as we await the surgeon appointment next Wednesday afternoon... the one that was rescheduled three weeks ago.  We don't talk about it much.  Whether it be worry or concern or fear or just avoidance, we don't talk much about it.  We just wait.

Rob is still sleeping quite often, for long periods of time.  But when he's up, he's much more alert without all that chemo raging/ravaging through him.  That's good to see.  And I think a little color is coming back in his hair!  That's good, too!  

He has been dealing with many headaches... bad ones that aren't helped with regular meds.  We don't know why, and I think we're both afraid to want to know why.  We just pray they don't stay.

With the exception of a few humiliating and humbling flawed-product days/nights, all is going well in our world.  Life is different, but it is life just the same.  

And that, too, is good!

I'm trying to finish unpacking the last of the boxes... just about there. It's the quilt room that's taking time, but I love being in there... whether it's finished or not.  I don't have the cable hooked up in that room on purpose.  I just watch old movies, and listen to music... to soothe my soul!  


I was off work last week and had so many things to accomplish, but my list of things to help me 'chill' seemed longer than the time I had.  Isn't that what usually happens?  I think I need a year or two to relax and get through my piles and books and papers and projects.  Or I just need less of the 'stuff.'  But I like my stuff.

My daughter has had my heart, too, the last few weeks as she continues to pass out and deal with the myriad of symptoms related to (or not related to) the Chiari.  Hiding my tears from her and Rob is getting harder and harder some days.  But my strength is in God, and He gets me through the days.  I just wish I could take away all the bad.  Everywhere.

Even with it all and through it all, the peace continues to cover us.

~~~~~~~~~
 
I've been having fun buying and selling on Craig's List, and furnishing the apartment with things I need (well, that may be a bit strong) at pennies on the dollar.  It's a challenge that I enjoy!  Well, it's kept me busy and entertained.  Doesn't take much these days.  :)
 

Tomorrow is our two year anniversary... ♥  

The time has been filled and has flown by in an instant, so it seems.  Even though it has been a time of many stresses and many tears, I am happy to have been able to be together during it all.  And I'm happy that he is still here with me.  Even if he's sleeping.  :)

I hope you are all enjoying a beautiful summer, and spending time soaking in all the beauty around you... the beauty in nature, and the beauty in the love of family and friends.  You can't get much better than that!

Thank you for the continuing lifting of us all in prayer.  Right back at you. ♥ 


In Love and Filled with Peace,

Cheri ♥