Biopsy Friday

I sat in the Rhode Island Hospital Radiology waiting room, slouched into a human depiction of Salvador Dali's "Persistence of Memory" painting.  Working overnight and not sleeping the day prior was starting to take it's toll on me by 1:00pm.  I was feeling punchy and actually starting to get a little concerned that no one had come to get me yet.  They finally took him to the OR around 10:30 and knowing he was going to be about an hour, went down to Au Bon Pain for a coffee (which I never drink!) and some breakfast with a good friend, Aura.

An hour later, she had to go back to work and I made my way back to the waiting room.  I played some Angry Birds, attempted to get my laptop working so I could do some school work and very unsuccessfully tried to curl up on the two person bench to catch a few z's.  It didn't work.  Finally around 1:15 they came out and told me I could see him for five minutes but that they were "very busy."  How was my visiting him going to make them any more congested?  Like I said, I was feeling punchy. 

When I finally saw him, he was sitting up in the stretcher, Johnnie on backwards (hehehehehehe) with his eyes closed.  He looked so peaceful. I saw down on the chair next to him and asked him how he was feeling and he said the 1mg of Ativan they had given him to "relax" him prior to the procedure barely touched him  but that he felt fine, just some pressure when they were inserting the biopsy needles and taking their samples.  They actually went through his back!  I thought they were going to go through his abdomen!  Anyway, the poor guy was STARVING, not having eaten since 8:00pm the night before so when the nurse came and asked him what he'd like to eat, it surprised me when they offered him a boxed lunch.  I was thinking he'd just get saltines and some juice.

He got the nicest boxed lunch! I know this isn't pertinent to his diagnosis or anything like that but watching him happily eat his ham and cheese and Doritos and chocolate Snack Pack made my heart squeeze!  It's hard to think of Al as vulnerable but watching him sitting on a stretcher in his Johnnie watching TV while eating a sandwich made me think of him as a child and how we all still have that little child inside us that wants to be taken care by someone that loves us unconditionally.  And I've wanted to do nothing more than take care of him since all of this started.

In any case, they said the biopsy results would take 3-5 "business days" before we knew anything. So, again, we waited.

Answers?

Al called me this evening to let me know that his doctor called him about his PET scan results.  Clear.  Totally clear.  Didn't even show the lymph node involvement that the CT scan showed.  Really?  That's curious.  The doctor told him that it would have lit up like a Christmas tree during the PET scan but there was nothing. So on the very positive side, the cancer did not spread.  On the curious side is: what the heck was the cucumber shaped mass that the CT scan saw??  They are working on getting the CT scan from the hospital so they can compare them.  He did tell Al that he might need a biopsy of the mass depending on what the two reports show but that it probably isn't carcinogenic.  So, that's good.  But curious...

Waiting...

I think the hardest part of all this (so far) is the waiting game.  Waiting to hear about results, waiting to find out what the treatment is going to be, waiting to see what our futures hold.  I try really hard not to get frustrated with Al's mom because I know she's coming from a good place when she asks if we've heard anything yet but it's just a continual reminder to me that we haven't heard anything yet.  It's hard to wrap your mind around what's going on when you don't have anything tangible to grasp onto.  So right now I'm just holding onto Al a little longer and letting my fears and worries of the unknown melt away into his warm hugs.

Good bye stress eating!

So, I've gone from eating every crappy food in sight to not eating at all.  My stomach is in knots and nothing seems appetizing.  My growling belly tells me I'm hungry but nothing looks worthy of eating. 

I'm just worried about the PET scan tomorrow.  I'm trying not to worry about anything until it's time to worry but a lot rests on what this PET scan tells us. Will Al need chemo or radiation? Will Al be out of work for the next three months or maybe just a couple of days?  Should I continue with school or postpone it?  Will we be able to conceive children the "natural" way or will we have to depend on the banked sperm?  And the most trite reason of all, will we be able to go on our Disney trip with our friends and family?

I can't even think about that one right now.  Like I said, I know it's kind of selfish to think about when there are so many more important things but the sheer build up of this trip...I can't even put it into words that would do the feeling justice.  It's just this swelling feeling of excitement inside you!  Disney is magical, especially around Christmas time!  Even more special this year was that we are going to experience it through the eyes of a child, Julia, and share the experience with Jen and Steve as well as cousins we don't see nearly enough. 

But if Al happens to have to go the chemo route, then we'll take it head on and deal with it then.  There will always be other trips.  I want Al around to plan and take those trips! Sometimes, in the last month, I get really emotional just looking at him.  Sometimes I fall in love with him all over again.  I can't imagine not having him as my better half.  This whole situation has really made me realize how much I take him for granted without even realizing it. 

I want to leave you with a video that always brings a happy tear to my eye and leaves me smiling!

One less thing to worry about.

I think we all dread talking to insurance companies.  It never seems to be anything other than a hassle and leaves you feeling like your head is locked in a vice.  I was not looking forward to calling up our insurance company to talk about our coverage.  I was downright scared, knots in my stomach, the whole nine yards.  I even reverted from stress eating to not eating at all.

My first sigh of relief came when the person on the other end of the line spoke clearly with no trace of a foreign accent.  The last couple of times I've had to contact anyone in customer service, their accent was so thick I could barely understand a word they were saying.  Thankfully Vincent from upstate New York was pleasant and supremely helpful.

To make a long story short, once Al reaches his "Out of Pocket" maximum (which he has after all the appointments he's had already), everything is covered 100%!  Aside from any co-pays we might have from office visits or prescriptions, all his other stuff will be covered.  Any radiation, chemo, lab work, radiology work, anything he needs from this point forward will be covered by insurance.  I can't tell you what a HUGE relief that was to hear.

At first it seemed selfish  to be worrying about the expense of cancer but it's a very real and tangible thing.  You constantly see benefits and telethons and charity auctions to help raise money for families going through different types of cancer.  Al and I each have our own charities that we donate to, Al's being the Jimmy Fund and mine being St. Jude's.  We know that the costs are astronomical.  So with the prospect of Al being out of work for an extended period of time, our house still under construction and me starting school in October, I was really starting to worry.

Well, thankfully, that one worry was put to rest after a very pleasant phone call with Vincent.  In the words of Forrest Gump, "And that's good.  One less thing."

A "human wife mode" minute

Since everything has happened, I've been in nurse mode.  I know who I am there and I'm comfortable there.  It makes it easier to explain to people what's going on when they ask questions, although very few people know.  I feel stronger here.  I don't think I've broken down once since Al's diagnosis.  Why bother?  What good does it do anyone to be a blubbering mess?  Then they feel sorry for you and I don't want pity.  It's not me that it's happening to!  

I haven't really talked to a lot of people about it either because that's just who I am.  I don't like to talk about things that are sad or depressing.  I like to focus on the positives and make the information that we do have work for us, not worry needlessly about the "what ifs" and "if onlys."  That's just how I roll. :-P  I almost shut down when we start talking about this situation with Al's family.  I guess it's part of how I cope.  Unfortunately, I've been coping by eating large quantities of chocolate as well.  Not good.  This totally happened:

I don't know why I am the way I am.  I've always been very independent, keeping to myself, wanting to take care of things along, do things my way.  My mom was so insulted when I finally told them because I didn't lean on them sooner.  "You don't lean on us for anything!" she cried, exasperated.  No, mom, I really don't lean on anyone except Al.  He's my rock and we are a team.  

In any case, I went back to work on Saturday for the first time in almost two weeks.  I was fine driving in and getting my stuff together but when it came time to take report from the previous nurse, something came over me.  I didn't want to be there.  I didn't want to be anywhere but with Al.  I started to get choked up and tear up and my sweet coworker asked if I was ok.  I nodded mutely and she said "Riiiight, come on, let's go in the back" where she proceeded to give me a hug and accepted my response that I didn't want to talk about it without question.

Later that night I got a text from my friend (who also knows about our situation):

Jen: "How ya doin cheeriest girl in the world?"

Me: "Lol I'm OK...almost broke down at work for no reason at all! :-P"

Jen: "Ummmmm no reason?? Silly girl.  You went into nurse mode.  And then had a human wife mode minute. You are allowed those you know"

Me: "Oh, I like that take on it!"

That was my first "human wife mode" instance.  I know there will be many more to come.  Al knows it's not me just trying to be strong for him.  He's strong and together we are a force to be reckoned with.  I'll be strong for him when the time comes but for now, we are just being ourselves.  We talk all the time and both understand the importance of keeping open communication during all this.  Not once have I kept something in that I thought would upset him the same way that he doesn't sugar coat something he thinks I need to hear.  Like that I've gained weight. :-P 

A look back...

In retrospect, I wish I had started this blog a month ago, but woulda, coulda, shoulda, right?  I'm going to try to sum up everything that's been going on with a quick timeline just to bring everyone up to speed.

• 7/31 - 8/8 - Al goes to urology appointment to satisfy the life insurance people who are insisting he have his "spongy kidney" evaluated before giving us the OK for him to be covered. Dr. Olsson discovers that Al's right testicle is much smaller and harder than the left. Al goes for an ultrasound.

• 8/9 - Dr. Olsson calls Al and says he needs to see him ASAP.  We make appointment for following evening.

• 8/10 - Sitting in the exam room, Dr Olsson talks to us about Al's testicular tumor.  I remember that he really never said the work "cancer" until I asked him about it.  I don't think they like to say the C word because it seems most people just shut down after hearing they have cancer.  I know I was feeling pretty numb.  He asked about the ultrasound done previously, from a few years back and we told him that we had never heard anything about it.  He said he would pull the records and review it.  Al and I can't even remember how long ago it was, just that nothing had come from it.  We both leave the office somewhat subdued.  Who do we tell? What do we tell them?  We scheduled Al's orchiectomy (testicle and spermatic cord removal) for two and a half weeks from today.  Al was to have a CT scan and lab work done to determine if the tumor had spread. 

• 8/19 - I left that night to head to Boston because I was flying out early the next morning to Kentucky for orientation for school.  I didn't want to leave him.  It crossed my mind just to stay home, snuggle up next to him and not let him go.  I could do school any time.  Now was the time I didn't want to leave my husband's side.  But he encouraged me to go.  I was teary (and somewhat embarrassed) when I spoke to my friend, Brandi, about missing Al while I was away at orientation.  I'm sure she was internally rolling her eyes at me but she didn't know what was going on at the time.

• 8/20 - Al has repeat ultrasound, blood work and CT scan.  I get a phone call from Al before boarding the bus to the campus.  He tells me that there are no tumor markers in his bloodwork and his CT scan came back clear.  I breath a huge sigh of relief and enjoy my week at orientation. 

• 8/29 - Surgery day!  I can tell Al is a little nervous, never having had any kind of operation before, because he snaps at me to get out of bed, he's so worried about getting there late.  We get there in plenty of time, check in and wait to be called to pre-op.  The nurse is super friendly and welcomes me in with him.  She escorts us to his "pod" and tells Al to change.  He looks so cute and vulnerable in his johnny!  They hook him up to the C/R monitor and watch his vitals, marveling at how low his pulse is.  At one point, as I'm rounding the corner from the bathroom, he says, "Hey Dani!  Look at this!" and I see that his heart rate is 38bpm!  We must have had about 10 people come over to "look" at Al's chart and comment on his low heart rate and ask if he's a runner.  Before the surgery, Dr. Olsson comes by to do his checks and informs us that there actually was lymph node involvement noted on the CT scan.  Whoa.  That came out of left field.  Not what we were expecting to hear right before they wheeled Al in.  Dr. Olsson believes that the lymph node involvement is big enough that Al will more than likely need chemo after the surgery.  A whole new ball of wax to wrap our minds around. Too soon, they ask me to head to the waiting room.  About 35 minutes last, Dr. Olsson comes out to tell me that Al is in recovery.  Almost three hours pass before they tell me he's ready to go.  Apparently he got lightheaded from the pain the first time he tried to get up and then he couldn't pee, so they finally said uncle and let him come home.  When I walked around the curtain in the PACU (Post Anesthesia Care Unit) he was sitting in the chair and he looked ok.  I helped him get changed into his comfy clothes and they wheeled him out.  He seemed in good spirits.  I think I drove the best I've ever driven on the way home that afternoon!  When we got home, I got him settled on the couch and went out to search for the only thing he said he wanted: Breyer's Mint Chocolate Chip ice cream.  I ended up going to two stores looking for it but what my baby wants, my baby gets!  I stopped at Steve and Jen's on the way home to give them an update.  I tell them everything that happened and now that chemo was on the table.  I'm not emotional, just matter of fact.  I've been in nurse mode since that first visit with Dr. Olsson and it's comfortable to me.  Later that evening, Steve comes over with a plate of grilled flank steak, brown rice and grilled asparagus for us.  Couldn't thank them enough for that!  Al spent the rest of the night on the couch where I slept, fitfully, with him until I went to our bed around 4:00 for a couple hours of restful sleep.   

• 9/4 - Follow up with Dr. Olsson. Explains how Al's tumor is staged and the possible treatment options available to us.  In the old staging days, he says that Al's cancer is Stage II.  It's a little more involved now and too much so for me to explain.  He doesn't think that radiation is even an option at this point because of the size of the lymph node involvement.  He refers us to a medical oncologist and we get an appointment for Friday.
• 9/7 - Appointment with Dr. Ahktar, medical oncologist.  I was NOT optimistic when we first entered this doctor's office and even less so when we entered the exam room.  First off, it's in the basement.  Secondly, they didn't take credit cards.  Thirdly, the exam room was so sparse but for an old 13" CRT tv hanging from the corner of the room and a very comfortable looking recliner plus the stool and exam table.  Oh, but there was a large picture window...looking out at a stone wall.  Fun.  My insecurities were put to rest when we met Dr. Ahktar.  Amicable, straightforward and intelligent.  He explained with no sugar coating what we could expect with chemo therapy.  No fun.  However, he did put radiation back on the table.  He was going to send Al for a PET scan to determine if there was any lung involvement and if not, then we would go the radiation route.  We left feeling both feeling a little shell shocked.  We were happy that radiation was back on the table but concerned and apprehensive (and in my case, a little scared) about what chemo would mean.

So, that's where we are at right now.  Al is scheduled for his PET scan on 9/11 and when the results are in, we'll have a better idea of what the plan is going to be for the next couple of months.