Talk About A Blindside!!!

Wednesday, May 2, 2012 – I took the kids to school as usual this morning and decided that it was totally ok if I didn’t go down to the office.  So I didn’t.  Of course, I really needed my morning coffee, and the nearest coffeeshop is right next door at Andrea’s house. 🙂  The service there is really great, except for when the Peppermint Mocha Coffeemate creamer is frozen, and then I just go for black.  When I got there, Andrea was on the phone and Jakob was on the couch looking at some books.  I plopped down beside him & said we should read some of those!  He was ALL for it!  I can’t believe how long it’s been since I’ve read little children’s books – they’re so cute.  After about 3 or 4 of them, I went into the kitchen so that Andrea & I could chat.  I love having my sister live next door to me.  We don’t get to get together all that often, although I think Tom might argue that statement. 🙂  But really, we have gone a whole week without either of us coming to the other one’s house!  We try to keep those weeks at a minimum though.

Mom met us at the house around 11:00 so we could leave for the appointment with plenty of time to spare.  I think it only takes about 45 minutes to get to Willamette Valley Cancer Institute, but I want to leave enough time for unexpected delays.  We arrived in plenty of time.  When I checked in, it was a little awkward.  The gal at the desk said, “So this is your first time here?”.  “Um, no.  I’ve been there quite a few times, I think this is my fourth.”  Apparently she looked at the schedule & saw how much time the doctor had blocked out for my appointment, and assumed that it was a first time appointment.  Bad sign number 1.

The receptionist then informed me that Denise in the Business Office needed to talk to me.  Ok, so it sounds like a financial talk to me.  I’ve heard how rediculously expensive chemotherapy can be and steeled myself for the worst.  She called us in, and had paperwork in front of her with some big numbers.  I couldn’t tell exactly what they were because they were small enough and far enough away for me to read, but I tried.  Finally she showed it to us.  I think the total was around $3600 =+/-.  This was above & beyond my $2500 deductible, and additional $5000 out of pocket expenses.  I was a bit confused.  I thought that she was saying, each time I went in for treatment it would be this much, but she explained that the amount she told us was for the ENTIRE 6 months of treatment.  That was a very pleasant surprise.  She explained that they did not expect us to pay for it all that day (well that’s good cuz it wasn’t happening!) and that they could set up a payment plan for us.  Preferably a one year plan, but if necessary, they could stretch it to two years.  They just prefer not to because once the year changes, we have to go back to having the new deductibles, etc.  The blessing to this though, is that they are willing to do this interest free.  Thank you LORD!

Out in the waiting room, mom saw someone that she knew from a long time ago & they got to chatting.  Apparently he’s a pastor of the Halsey Mennonite Church.  We visited a while, and then my nurse called me in.  The other great blessing of the day was that I didn’t have to have any blood drawn.  I have been told that at every appointment, I will have my blood drawn so that they can keep an eye on my white blood cell count.  Makes sense.

Upon getting into the room, the nurse took my temperature & blood pressure: 116/68 if I remember correctly – I thought I wrote it down on the calendar in my phone and apparently forgot to hit “save”.  Chalk that up as one for an overstuffed brain.  Shortly after the nurse left, Dr. Sharman came in.  We chit chatted a bit, and then I told him I wanted to talk about the Bone Marrow test.  He said, “Ok, let’s talk!”  The long & short of it was that I told him that we were not going to do that again without him giving me some Valium, or else I would just come drunk!  LOL!  We all had a good laugh about that.  He told me that it would be fine to have something like Valium if we had to do it again.

Then we got to the meat and potatoes of the appointment.  He started out by telling me that based on what he has seen in my PET scan & Bone Marrow test results, I have a 77% chance of being cured.  Bad sign number 2.  Everything that I had read up on talked about how even people with Stages 3 & 4 Hodgkin’s Lymphoma can have an 80-85% chance of full recovery.  I did NOT like the 77%.  He then told me that I am at Stage 4.  What???  Stage 4???  I started crying.  I knew that because I had a mass in my chest, I really didn’t think that there was any way that I could be a Stage 1.  But Dr. Neal had given me a physical earlier (this will be in the prequel blog) and he had not detected any swollen lymph nodes.  Neither had Dr. Sharman when he physically examined me.  So I figured that I was probably a Stage 2, but maybe a Stage 3.  Surely there was NO WAY I could be a Stage 4.  Well, apparently I was completely wrong.  He did try and soften it a bit by saying that it could be viewed as a Stage 4 “lite” since it was just one lymph node in my back that really pushed me into the Stage 4 category.  There are many people who are in Stage 4 and in way worse condition than I am.  He even said that you could probably take my case to a room full of oncologists, and they would argue whether I am Stage 3 or Stage 4, but that he was going to stand behind his Stage 4 diagnosis.  After another brief meltdown of tears and a couple colorful words, I told him, “I REALLY don’t like you today.”  He replied with, “Yeah, I’m probably headed up the s*** list today.” 🙂  Yes, I definitely believe so.  Here are a couple pictures of the PET Scan:

Dr. Sharman went on to explain a little more about how my treatments would go.  I will need to have chemotherapy once every two weeks for 6 cycles.  Once cycle is 2 sets of treatments.  So the easiest way to explain it is to say I will be having chemo for 6 months.  This does mean that I should be done with it by Thanksgiving – that will definitely be something to be thankful for!!!  Originally he said it would be 4-6 months of chemo, but with my Stage 4 diagnosis, it was going to need to be 6 months.  He did mention that on occasion some people have to go for 8 months, but that will have to be something we figure out later on down the road.

I asked him if I’m going to have to have radiation in addition to the chemotherapy.  He explained that with Hodgkin’s, radiation is used when a mass is more than 10 centimeters in size, and he needs to get a copy of the CT that they took on April 5th.  When I expressed my surprise that he didn’t already have that, he said that he had been sent the report, but not the image.  In one report it says that the mass was 10.3 cm, but he tried to do some measuring of his own from the PET scan, and he wasn’t sure it was that big, so he really needed to see the image.

His next question to me was, “When do you want to start treatment?”, to which I answered, “Friday!”  We then went out and got everything scheduled for this Friday, and then my next appointment on Thursday the 17th.  I can hardly believe that it’s really happening, but it is.

After hearing everything he had to say, I had a question of my own.  “How long have I had this?”  He replied that based on the size and the stage that I’m at, I’ve probably had it for at least 2 years.  I was stunned.  How could this be?  I mean, 2 years???  I can’t hardly believe how something could grow inside me for that long and not be found.

Although I didn’t have much of an appetite after getting this fantastic news, I knew I needed to eat something.  We stopped at Shari’s to see if they had a taco salad in a tostada bowl, and ended up down the street at Taco Bell.  On the way home, we stopped in Brownsville to let Tom’s parents know the results in person, but they weren’t there, so we told Teresa, Tom’s brother Joe’s wife, whom they live with.  We visited for a little bit, and then went up the hill & set up a sign on the house lot I just listed in town.  The view is amazing by the way!

Today was the first day that I have really felt angry.  I mean really angry.  I wanted to scream, throw things, break things – I didn’t know what all!  I don’t even know why I was angry except that the results in my opinion were so bad.  This is not fair!  I did not want this – I don’t do things to my body to make my chances for cancer high.  Why am I having to go through this???  As much as breaking things sounded like a good idea, I couldn’t think of what I could break that wouldn’t end up costing me a lot of money in the end.  Maybe that would be a good business to start up – a place full of things that could be broken, and people could come in and pay to do just that for a length of time.  I think it’s been done with sledgehammers and cars before.  Oh well, there went another “SQUIRREL!” 🙂  I finally decided that what I really wanted to do was go out and run.  I haven’t felt good enough to go running in so long.  I had set a goal for myself this year to run 366 miles – 1 mile per day, but not necessarily 1 mile every day.  The last time I got seven miles done in a week was March 9th & 10th when I ran 7 miles in 2 days.  It felt so good.  The next weekend, Tom & I had gone out to the Sea Gypsy in Lincoln City for our 19th wedding anniversary.  That Saturday, I ran from the D river to Chinook Winds Casino on the beach, a 3.5 mile round trip run.  I remember getting back from that feeling really winded, but figuring that was because I was running on the sand.  I did plan to go out the next day (Sunday) but I was so tired I just didn’t have the energy to do it.  So today (5/2) I decided THAT was what I really wanted to do.  I wanted to run as hard and fast and far as I could.

As soon as we got home from the doctor’s, I got out my exercise clothes, strapped on my heart rate monitor watch, got my iPod charged and in my running band that goes on my arm, and laced up my Nikes.  I wanted to run until I couldn’t run any more.  I wanted to run until I collapsed and couldn’t breathe.  I wanted to scream and sob and I didn’t care who saw me.  Well, I found out a few things. I can’t run very far anymore.  I couldn’t even do a half mile.  That was discouraging.  I also can’t run very fast either, but that wasn’t a big surprise. 🙂  However, I was able to run HARD.  And that I did.  I got onto the Periwinkle Bike Path where it begins right off of Oak St, and started running.  I don’t know how far I got, and I don’t think I went more than 30-45 seconds, but it was enough to get me to the point I wanted to be.  I couldn’t run another step.  I could hardly breathe.  I was sobbing.  I was exactly where I needed to be.  I told God I was mad, and He didn’t get mad at me.  This disease is evil.  No one deserves it.  I am just very fortunate to have a type that has such a positive prognosis.  For that I am blessed.

9 thoughts on “Talk About A Blindside!!!

  1. I’m reading, and hurting for you. But writing these posts are probably helping you as much as anyone…and helping me and the others who are reading to understand the many facets of this disease. Just because you are angry doesn’t mean that you have lost faith in God. I suspect that you will be on very much of a roller coaster for the next several months–and I am glad that you have set up this forum to journal your experiences. Thank you for allowing us to walk alongside you and support you during this time with words of encouragement, prayer, and physical acts of help and love. Hugs.

  2. Nobody deserves this, and I am so sorry you are having to endure this treatment and uncertainty. Your family has had enough already! And I know about the anger. I am dealing with that in my situation too. Have to figure that one out.

  3. When my cousin was going through treatment he got very angry also and wanted to throw and break stuff. His parents set up “some walls” it was made with some 2×4 for a frame and the lined with some traps that included covering the ground and they went to goodwill and the dollar store for some cheap glass ware and let him go. I hope that you find a way to let your angry out.

  4. Again, thank you for sharing your heart. I am crying with you as I read this…..and telling myself that our God is a Sovereign God and He knows what He is doing! He knit you together in your mother’s womb and before you took your first breath He ordained every step of your life! We trust in Him! Praying often for you…..

  5. We have June 22 set on our calendar for the Relay for Life and Brandon would be honored to walk or run with you and maybe swing a bat at something breakable. We are praying for you daily and hope that your brain comes back to fill that black hole up there ; )

  6. oh wow, my heart breaks for you. I like your idea of the place to go and smash things. Praying for you. I am a friend of Nicole

  7. Hey sis – I’d be more worried about you if you weren’t angry. It’s totally normal…and in my opinion, healthy. Remember that even Jesus tore up a temple!

  8. Kristin,

    My eyes are filled with tears for what you are going through. I can’t begin to imagine what you are going through!! I wanted so much to give you a hug in church yesterday morning..but by the time
    I was done on Worship Team, you were gone. I want you to know that I see so much courage in you. I want you to know that I am praying for you. You are so brave. Thank you for keeping us up-to-date and I can’t believe how well you are explaining everything as to what is going on in your body. May God bless you through this tremendous trial. As Pastor Scott is teaching us in church….may Grace and Peace be yours abundantly through this time!!

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