Circle the Wagons

img_2165When contributing to different media outlets photography, positive and inspiring stories and events, there were times when I decided that the camera and pen were to be be shut down. An example is on a story detailing a school that was having a replica of the Vietnam War Memorial put together on their football field. Filmed the school children lining the streets welcoming the semi trucks coming into town, wrote about a teachers vision to one day have this replica become a reality. But when people from all walks of life began to visit it, placing their hands on names and crying, it didn’t feel right to invade their pain recording it or details writing on it. The cameras and video equipment were silenced and respect for what was taking place honored. The piece done was picked up later, and shared to millions through CNN on Veterans Day, 2010.

This in one of the reasons the iPad keyboard is going silent (taking a break from “blogging”, which I still don’t quite understand what it is). Right now isn’t the time or place to share the intimate and private battle this family is fighting and trying to come to terms with. Family and friends will continue to hear from Bobbi whenever she’s up to it or wants me to share with them news. We are in no way giving up this fight! There will be good days and unfortunately rough waves our tomorrows will bring. It’s time to circle the wagons and bring together all whom she has loved and who love her. The last update she put on Facebook today, with it being deleted a few hours later. Will always stay in touch with others, our email is on another page. We certainly are not conceding anything to Twisty! It’s a bitch of a disease. Plenty of fight and time left. Each 24 hours alive is about choices and mine this hour are is spend as much as my time interacting with her. There are some tough ass days, but there still is a lot of love and laugher! Laugher is so important! She is quite the unique person. I just smile when thinking about her! We have such a fun week in front of us. Spending time with family. Christmas makes it more special! Missing all of them. Seeing Sean, Jen, and the grandkids soon is exciting. 

Thank you for the kind support, prayers, and wisdom to the many never met. The battlefield has change dramatically. Both of us are wishing everyone a very Merry Christmas and a peaceful New Years. My time is now going to be spent entirely on taking care of my wife. In my world it matters the most. 

Optimistically Resilient

We knew deep down that the battlefield has changed. The CT scan Bobbi went through last week showed no liver spots to be biopsied. Naturally we were elated. Christmas miracle. The doctor performing the procedure even said the spots might have been inflammation from her first bile duct stent falling out and going through her system. Nothing to be seen meant the cancer hadn’t spread right?

Well, he’s not a oncologist. And after discussing it with three unrelated oncologists we learned that her pancreatic cancer did in fact spread to the liver. It has metastasized. We met with a new doctor, Tuesday, before her chemotherapy treatment and she confirmed things. The reason the spots were not seen by the CT was because her first two sessions of six treatments of chemo decimated them. Which is good news, yet learning that her cancer has in fact spread, and how we learned of it, was heartbreaking. There more than likely won’t be whipple surgery. Plans are now to do two more sessions of chemo, PET scan, then radiation for five weeks, once a day on the tumor in her pancreas.

Bobbi took the news good as one could I guess. At least we now have clarity she said. We wanted to believe this and that, hope for the best, but reality has a way of slapping you in the face no matter what your wishes are. It’s Thursday, we took a nice drive to get out of the house, talk, and went out to dinner. Have had lots of talks of late. Putting all the cards on the table, not trying to convince ourselves jacks are queens and hearts are spades. Three different doctors have been involved, many different scans at different hospitals, and everyone assumed that the other had informed us about it spreading, when in fact we never knew and had to learn about it in the manor we did. Doesn’t change anything. It is what it is. Can get angry and I want to jack people up but it wouldn’t do any good. It’s also isn’t an automatic death sentence. Because we may have a good idea what may eventually lead to our crossing over doesn’t mean you stop living, laughing, or loving. I know, with my heart having a full metal jacket in it with 19 stents, and complications from the open heart surgery, that it will probably be what does me in. Yet I’ve been battling the challenge seven years now when told one to three years at the max. You just never know. To start digging your grave because of bad news is nonsense. Bobbi shared she’s been aware of it for sometime in the back of her mind. Again wanting to hope for the best, yet still knowing deep down that Twisty had more tentacles unseen but felt.

Physically she is doing well. This last session has left her joints sore and numb. Fatigue hasn’t kicked in yet, but know some will soon, is tender in midsection. Has medication for discomfort and anxiety. Was assured that medications would given no matter what the problem. Don’t know if they have pills to give us 10 more years, the real problem. But palliative care will help ease discomfort. I know from experience that isn’t always the case. Morphine may take the pain scale of ten down to a 6, not to mention all the BS side effects.

Tuesday night we slept for about three hours. On Wednesday night she fell asleep five minutes after her head hit the pillow. I went into the living room and just sat in the dark thinking and trying to wrap my mind around everything. I want to do whatever I can to make her smile and laugh, feel loved, and be happy. We are hoping for some years. Not stupid though. Statistics are statistics. They don’t mean much but they don’t come to be by rolling dice and adding things up. This is a terrible cancer. Once it spreads it really is a different battlefield.

Clarity is important. Bobbi is a fact person. She deals with reality pretty damn good. Right now she is assuring others that she doesn’t plan on leaving this earth soon and worried more about how loved ones will handle the news than how it will impact her life. We talk about it though. We have the tough discussions and talks that we never dreamed in a million years we’d be having. Right now we have TODAY though. That will be what we live in and take in. Optimistically resilient. Twisty is certainly going to be smacked around and choked off when it can be. We each agree that when it’s time to slide into home base it’ll be head first with plenty of dirt on us. No time for games or time spent on meaningless things. This fight is a long ways from being over! Going to have a great holiday. Going to visit with her sister Lori and Jim on Christmas, and nephew Jordan. Then when we come back our kids and grandkids will be visiting! Very excited to see and spend time with everyone. It’s been hard to get together when not knowing if there would or wouldn’t be surgery, and when it’d be if so. She is still on a high from seeing so many at her “You are Loved” party. So many people from the hospital she worked at for forty years she’s kept in contact with. The news wasn’t great, but life isn’t always great for anyone. You fight your battles the best you can, give it your best shot and live in today. None of us know what our tomorrows will hold. As a friend shares, we could get hit by a bus. We are hoping everyone a Merry Christmas and a peaceful New Year! Let this writing remind you to look at the people in your lives as if it’ll be the last day you see them, and the words shared as if the last. The fight goes on!

Is Twisty Hiding in the Shadow?

We drove down for the liver biopsy last night, checked into a hotel a block from the hospital, and went out for a nice supper. The surgeon told us last week there were a number of new spots on Bobbi’s liver and the biopsy would provide us whether or not there’d even be a surgery. Showed up on time, she was prepped, blood taken, and we waited for the procedure to be done. Thinking positive the whole time but preparing ourselves for grim news.

We weren’t  expecting  a Christmas miracle, if Twisty isn’t just hiding in some small cell we’d be lucky.  There wasn’t a spot to be seen. Strange. She moved into different positions on the CT and still nothing. A different hospital than the first imaging was done. All week long Bobbi has lived with the thoughts that her cancer has spread. Trying to stay positive but even the surgeon, going on the films they had, thought it had spread. When they said there was nothing to biopsy we about ran out of the hospital. I wondered if the beast is watching in the shadow. Damn thing.

Don’t know how, why, or anything in why one place said there was and then another saying all was good. Elated for the good news but also a bit angry that she, and the whole family, had to spend the last eight days mentally preparing for the worst news possible. It was fighting Twisty and having it suddenly becoming a dozen of them. I don’t trust this monster. It makes a horror show mage in Hollywood boring. It’s the stranger in the dark.

We’re unsure what the next step will be. Calls have been made and we’re thinking the original planned Whipple surgery will be next. Get the tumor out of her pancreas and follow it up with 4 months of chemo. Knew it was too early to step out of the batters box. Knew we had to stay and think positive, which we did, but things certainly didn’t look good. Onward with this battle, there will be no rest until Twisty has been destroyed. It’s still inside her and it’s shown to be crafty and deceiving. It felt like Bobbi was walking the Green Mile, going to be strapped into the electric chair, and the phone ringing at the last 5 seconds before the switch was flicked given a full pardon. Each day dreading waking up because it was the first thing on both our minds.

The “You are Loved” party in Wisconsin took place and really brought a smile to Bobbi’s heart! Was so happy to see her having fun talking with so many.  It was so good to see her laugh and smile, even in the midst of unsureness in severity. We FaceTimed with everyone and seeing people dancing and wishing her well, missing and loving her, can’t be described in words. Now with this good news she is riding a well deserved wave of happiness. Yes, a major surgery isn’t a great thing thing to look forward to, but knowing that she’s still in the fight is a blessing. Thank you to everyone who took part in this, as well as the support and prayers of others across the globe. It has become a global support. People we’ve never met in person, from Wales, England, Italy, Mexico, and new blogging friends here have been unbelievable. Never imagined that so many would take the time to lend their support, recommendations in getting second opinions, prayers, gifts, all of it! I look back on how we dealt with this last week, look at the goofy video made doing the coneheads skit on the last post, and I’m more convinced than ever that positive thoughts and energy make a huge difference in today and the reality each day brings. There will undoubtedly be more fastballs coming. Not today so will embrace it. She WILL beat this. There is fear but no compromises. It will and hasn’t effected our celebration of Christmas. It’s wanted to! The mental anguish has been the toughest it’s ever been this last week. One I wasn’t sure I’d personally be able to endure physically. But just when your at the edge and brink of despair there is always hope. A simple for letter word that now has so many meanings.

Thank you for the read. Very much appreciated. We couldn’t have the attitude we have without it. Never give up! Pick up the bat no matter how heavy it may seem or how bad the last pitch hurt smashing you in the head and swing away. We all have this ability. May not feel like it at times, but when push comes to shove we learn things about ourselves we never knew existed. Until the next writings please embrace today and try to find the good in it. Hard to do when physical pain wants to be boss. All of us are human and will have these times. Hard to put one foot in front of the other while our bodies and thoughts are saying no more.

There really is no description in believing, even being told, that the cancer has spread to there not being a single spot. The doctor said it might have been inflammation from her first bile stent becoming dislodged. Not going to lift our foot off Twisty’s neck, it’s going down! Going to continue to think positive, make goofy videos, and move forward. When dealing with cancer it’s rare to get good news. It certainly was a relief to learn this good news in the midst of this battle.

UPDATE 12/14/17 – Plans now, after several phone calls between Petoskey and Grand Rapids this morning, is to have 2 more months of chemotherapy and then another scan to see if spots reappear. They’re being cautious and before they do the Whipple procedure. Which makes sense yet knowing the tumor in her pancreas is still there is naturally worrisome. It is what it is and all the worry in the world won’t change anything. We’ll continue to take things day to day and keep swinging at the pitches. Waiting now to see when the chemotherapy will resume. It’s not a set back. Feels like one, because their not really “sure” and I expect things to be in black and white with no in between. All I can do is be supportive and remain strong for her.

Refreshments

 

This may appear upside down, why unsure, but hit play and it will become upright. Yes, we may be dealing with some serious challenges (one with cancer and one with heart disease) but never shutout laugher and love from today! Married and still crazy after all these years! #ConeHeadsMovie Have a great weekend friends, we are! Live each day of your life like it’s the last and love!!

You are Loved

The anticipated CT scan took place as planned. Bobbi stopped by the hospital a few days early to have labs done and picked up two bottles of contrast dye she drank before the test. The label on the bottles said they were like a vanilla flavored smoothie but Bobbi shook her head with disgust drinking them down. A long ways from a smoothie she said. They then placed an IV in her arm. Why they continue to stick needles in her, for blood work, IV’s, and such when she has a port confuses both of us. Use it!

Two days later we were back on the road to Petoskey to go over the scan with the doctor. First seeing the nurse, who took vitals and her weight. Then about 45 minutes alone waiting to see the doctor. Usually it’s only five minutes or less after meeting with the nurse. When he came in he explained that the scan hadn’t arrived but the preliminary report did.

He said that everything that could go right went right. The tumor shrank to 3 to 4 millimeters. We were elated. Wow! It went from 3-4 centimeters to millimeters! What we didn’t catch at the time was that he was talking about a tumor present in the liver. Not the one in her pancreas. When he mentioned liver I told him we knew nothing about a spot on Bobbi’s liver. This was the first time even hearing about this. Something didn’t make sense or add up. WTF? When asked about the tumor in the pancreas and it being butted against her portal vein he said the report only detailed the liver. We thought that it must be good news if it went down, the chemo was working, because it wasn’t even mentioned. He asked what plans the surgeon had and we explained that a Whipple was the next step. He said that he didn’t know what criteria the surgeon wanted but perhaps no surgery at all. The tumor had shrunk so much maybe more sessions of chemo? That would be great!

We left the meeting feeling elated, everything that could go right went right he 0said. This was good news right?Though in the back of my mind red flags went up. We text family and relayed the good news. We drove back excited that there was a chance no surgery would take place. Bobbi wanted to celebrate getting a cream puff. There was a bakery across the street from the hospital so we made a quick stop. No cream puffs, she settled for something else.

On the drive home things simply didn’t add up right in my mind. I didn’t want to say anything and wreck the good mood by questioning things. Everything that could go right went right we were told. This must mean what it implied.

After we got home we sat down and read a copy of the report. It gave a detailed summary on the tumor. Problem was that it was a new tumor we didn’t even know existed before today. When it got to the pancreas the report said that the known mass there had poor detail imaging. That was it. One sentence on Twisty. We googled all the medical jargon that the report was written in and learned the tumor he spoke of was in fact in the liver. There were also spots on her lungs but they did appear to be cancer related. Which is what we’re being told today.

Maybe it was scaring from the result of her bile duct problem? The tumor in her pancreas had blocked it, which lead to the jaundice and then her cancer diagnosis in August. A temporary plastic one was placed in the duct to relieve pressure. This fell out about five weeks later and was replaced with a metal one. So maybe it was a spot on the liver from this? Had to be. We would know more when the surgeon calls us from Grand Rapids after they receive the actual imaging. Knew it would take a couple days.

We lived by the phone, waiting to hear from her surgeon. When Friday arrived every thought was on the phone ringing. What a situation. To live your entire life, to suddenly be waiting for a 5-10 minute phone call that would change it forever. The hours passed with no news. At about 4:00 it rang. It was the surgeon. She explained to us that the imaging did arrive late in the day, but because it was a Friday her team wouldn’t be able to read everything, compare them to past scans until Monday. She said she wanted to call us and at least inform us that things did arrive, knowing we were very concerned. Monday? Seriously? I understood why, but it seemed like years until then.

So we waited, determined not to worry and spent the weekend watching TV, cleaning the apartment, talking and finding things to laugh about. Attitude is important and I know how to get her to laugh. We each said we were having bad hair days in the morning. Both being bald made this impossible of course. But it lighten the mood. Bobbi’s energy returned and she was busy as ever going about the day. On Sunday we drove over to see her brother Mike and spent most the time laughing and having a good time. Her family are really good people. We have our moments like any family, but who doesn’t. Situations are dealt with and moved on. One can’t help but leave in a good mood after spending time with him.

On Monday morning Bobbi went with her mother Betty to a doctors appointment for a hip problem that’s been causing her a lot of pain. Which again shows you the type of woman she is. We are waiting for a phone call, that will change her life, one direction or another, and she makes it a point to still take her mother to the doctor. It’s one of the reasons I love her so much. She has always puts others first, with no hesitation.

When she got home we sat on the couch and waited. The hours passed slow. Around 4:55 the phone rang. The called ID said it was from Grand Rapids. It was her surgeon. The call took the wind out of both of us.

The doctor said that her team looked over everything and she was highly concerned about “spots” on her liver (more than one). We asked if it could be related to the bile duct problems from the stenting and she replied that they considered this but some spots were definitely unrelated to that. There were spots that didn’t show up in her scan in August, which were present now. Her scan in October, when she had the metal stent put in showed them, but nobody informed us, assuming we most have been aware of it already. It was the hospital here in the Soo who did the scan in October and they had no idea what we knew and didn’t know. I think the hospital figured we were informed already. Surgeon said the the liver tumor started out about 14 millimeters. Chemo shrank it. Bobbi asked her point blank if it meant her cancer is metastatic, has spread, their was a moment of silence, and surgeon gently said she believed so.

Tests for a biopsy will be done on Tuesday in Petoskey with guided ultrasound. Problem is the chemo worked so well on this tumor that it may be hard to biopsy to know for sure. The fact that it shrunk is a sign in itself. Scars don’t shrink. She also said there were more than one, unrelated to stent problem. It was a very uncomfortable conversation. The surgeons voice sounded sad. We won’t know anything for sure until the biopsy. She recommended that chemo be continued, if it wasn’t making her too sick.

So that’s where we are. Hoping for the best, to hear that it’s nothing to be concerned about, but also know that it’s a game changer. She said there would be no sense to do the surgery if it has spread to her liver. Why put her through that ordeal she added. We are going to drive to Petoskey Monday night, get a room, and be at the hospital early at 8:00. It takes about 72 hours for the results. If they can get to it. If it has spread she will have to stay on chemo forever she said.

I told Bobbi I was done writing about this. She insisted that it must be written. I’m not comfortable doing so. She wants this to help others and it’s very important to her to do so. We don’t know anything for sure. Not going to jump to conclusions without the facts. Angry that we had to find out about the liver spots the way we did. Maybe nothing to be concerned about. The fact that the spots responded to the chemo isn’t good. The fact that the spots shrunk isn’t good. The fact that no one has mentioned anything about the pancreas tumor against her portal vein, is concerning. No mention of it. That was the beast we thought we were fighting. What I do know is that there is a whole lot of fight left in us. We knew that this wouldn’t be easy. It feels like we have to ask the right questions to get the answers.

Yesterday I went out and got us a small Xmas tree and it looks wonderful. We had put up decorations and some lights 2 weeks ago, but not a tree because we thought she’d be in the hospital for the surgery a couple weeks. Bobbi decorated it beautifully and we are still determined to enjoy the holiday. Very hard to do, but refuse to allow it to strip from us the good. We’ve cried, and I hold her at night close. It’s a very confusing time. I looked at her decorating the small tree and decided to take a shower. I wanted to hide my tears. I love her so much and it’s so painful to watch her experience all this. August 24th feels like a million years ago.

There is a gathering of friends being held in Wisconsin this coming Saturday, simply to show us we aren’t alone. It’s overwhelming seeing how many people are involved and doing so much. She is feeling so much love from others that she often sheds tears when a Facebook notice sounds on this iPad. We have it set to sound like popcorn, and at different times it’s like a large kettle is being cooked. Thank you family and friends. Life often shows the worse of humanity on TV and in newspapers. This shows the very best in humanity. The worst three words heard was “you have cancer”. The best three words she has heard is “you are loved”. Thank you are words that can’t describe what this feels like. She has touched so many lives, and will continue to. You have certainly helped her in ways that only love can do. When we decided it was time to let others know what was going on, until now, the love shown has been unbelievable.

The battlefield may have changed a bit. But there is no quit in her DNA. Not now, not tomorrow, not anytime. Tuesday more tests, results probably Friday or Monday. Have gotten about 5 hours a sleep these last few days. How do you tell your mind to shut down when there is no off switch. We move forward and deal with today. She is feeling good, no pain, but it’ like getting hit by a fast ball. Shock, disbelief, confused, concern, all combined into one.