Surgery Today

Went to hospital for Bobbi to register at 7:30. Sean came with us. Jim, lori, Jeff and Chrissy soon arrived. At 8:30 they took her back to prep then allowed us to visit with her for an hour. Bobbi was cheerful and hiding her real emotions behind humor.

We’d look at each other and had a hard time not tearing up at the same time. Monitors were hooked up, wires, things I had no idea what they were. As she visited I simply rubbed the side of her head where new hair was starting. We spoke the same language to each other with our eyes. I remained quiet, taking in everything that was going on. Wanted her to spend the time with her family and son. The surgeon came in and explained what was going to take place, said a prayer around the bed. I was as at a loss for words. The journey has been hell and she has fault so hard to live and never balked this entire time with countless trips of chemo and pre-operative instructions. She truly is a warrior. The week leading up to this was difficult. Having the kids visit helped a lot. Now everything is resting on text messages that the surgical room is sending letting me know what’s going on.

The first text said the surgery begin at 11:18. The first thing the surgeon is doing is checking her liver out to doubly make sure there are no tumors. Then the procedure will take place.

Second text at 12:11 said no spots on liver. Surgery is continued.

I’m in the hospital chapel as I write this. The next thing I knew 5 or 6 people came in and a service began. Lasted about 20 minutes. Didn’t know when to stand, sit, kneel, or what to say back as it seemed everyone said the same thing by memory at certain times. Respectfully tried to do the same. With Easter this Sunday I think it was in relation to it. Pastor talked about Judas.

All of this feels surreal right now. My every thought is on Bobbi and flashbacks of simpler times. I’m so fortunate to have our paths cross 25 years ago. This experience has brought us closer in a million ways. About 80 minutes have passed and still quite a long wait to go.

Going to get something to eat now, meet back up with everyone. Know many are praying for her and in their thoughts. Many well wishes received this morning. A very touching one was sent by her nephew Cole. It meant a great deal to both of us.

5:51pm – Surgery is done. A complete success. All areas around were clean. Portal vein area inflamed. No ICU unit. Will be up and talking in 2 hours. Will be taking it easy today with rest, tomorrow walking. Good 3 to 4 days with drains. Everything that had to go right went right. Thank God. Twisty is gone. 100% successful! Not out of the woods yet but certainly see the trail and sunlight. Back in the chapel giving thanks. Thank you to everyone. When the going got tough you helped her in ways no others could!

Update March 28, 2018

Doing better than expected. Numbers all look good. No complications. Walking a lot, trying to do everything herself with no help but you know how she is! Miss. determination woman. Watching her sleep today was nice. She had a calm look that I haven’t seen in a long time. Family was here visiting and a good friend she grew up with. So glad Twisty had its ass kicked and out of there. Will continue to update this post with news. Thank you for the love and messages here on and on Facebook. She’ll have a few more months of chemotherapy when healed. Not sure what cocktail blend or type, all that will be decided later I’m sure.

March 31, 2018,

Sean and I went to the hospital yesterday morning and quickly learned that she was cleared to leave! Unbelievable. 70 some hours after surgery and she walks out the door. Last night she walked the hallways here at the Lodge and watched CD movies available from their large selection in a study room.

About 5:00am I woke to find her out of bed and sitting in the recliner. Asked her how long she’d been up and she said only a few minutes! Somehow or another I just knew she wasn’t in bed.

Today her sister Chrissy visited and spent some good quality time together. Sean went to Meijers food market and stocked up with soft foods. Bobbi also decided to tackle 3 sets of stairs! I was like….WTF? Seriously? It felt so good to sleep together. We have nothing planned for the next week. We leave Grand Rapids in 9 days after seeing her surgeon for follow up visit. Things are going very well. She is getting up and down like nothing took place.

 

You are Loved”P

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.

Screw You Cancer

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Bobbi was holding onto my side as our old motorcycle was flying down a hill. I asked her about stopping for breakfast and then realized I was dreaming. It was 2:00am in the morning, she had her arm around me, wide awake. It sure felt real. I rolled over and asked why she was awake, told her my dream, and before I knew it we were sitting in our living room having coffee. Her 6th Chemo was yesterday and we traveled through two snowstorms on the journey south and coming back. Roads were icy and winds gusts of 35mph were reported. We knew that snow was expected, the TV announced winter storm warnings for the last two days. Had to make the trip though. Roads were terrible but Twisty has got to go. The treatment went as expected and the cocktail absorbed. We now wait until a scan in two weeks to see if she can have the surgery performed. The scan was planned for Monday but the powers to be want to see the full impact of todays treatment. If the tumor in her pancreas shrunk then surgery will be about 30 days from today. We’re hoping so. How screwed up is this? Hoping to undergo a Whipple procedure. WTF. But it is what it is and messed up choosing this fighter to mess with. She is determined to kick its butt no matter what.

So here we sat, up at 2:00. Years back it was our bedtime! Bobbi, out of no where brought out the hair clippers and said let’s do this. A half hour later we each had bald heads. Screw you cancer! You will not have the power today, not EVER. We may look like a couple of eggs to others, but have a battle at hand and will not give it the upper hand. Period.

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Bobbi’s friends and family, people she never met, are amazing. A once lonely struggle has evolved into one where many have lit their candles, said their prayers, and are sharing their love.

She shared the photos with friends on Facybook, and tweeted them out on our 100,000+ strong Twitter account (see here) She looks and is beautiful. Hair, no hair, matters little at this time. A simple haircut empowered her and wasn’t emotional in any way. We are talking life and death and the later is unacceptable.

I don’t know when a full nights sleep will return. I want so badly to swing my fists at this terrible disease. Beat it to a pulp and then take the boots to it. I stopped the wondering of why and not possible. We are not going to back down and feel pity. Many are climbing their mountains and life isn’t easy for any of us. Life certainly isn’t for the weak. If so it’ll run over you and bring you down. When push comes to shove everyone has the power to give it their best shot. Amazing things can happen when you believe and take a no prisoners attitude. It may start out by knocking you out, and down, attempt to strip you of your dignity and faith, but you slowly get back up, even if you can’t see straight and unsure if you can stand, and fight. May lose a few battles, but will win this war. May bend in the wind but not breaking. Screw you cancer. Not today.

The Dark Of Night

October 9, 2017
Yesterday was another rough day. It’s Monday, about 3 :00am in the morning and I’ve staying up all night to watch over things. On Sunday morning she got up early, dressed, and was tired walking across the room. Her scalp hurt, skin, mouth. Hair continues to comb out in clumps. Her mood was very down and emotional. I went to the store and got a few scarves and flowers. It picked her mood up some but the day continued to be tough. We sat outside for about 30 minutes and even the sun caused pain on her skin. All the areas where new cells are constantly being made are effected by chemo. The medicine kills cancer cells but also kills good cells that reproduce naturally each day. The pain in her pancreas is not the chemo but the tumor. So the battle was taking place at different spots and different times. Her brother Steve and his wife Debbie were in town, texted to see if she was up for a visit but shared she was whipped out for company. They understood. We watched the Lions play but really didn’t follow it much. She tried to stay awake so she’d be able to sleep tonight.

I had a feeling that her night wouldn’t go well so laid down for an hour about 2:00. Sure enough, it didn’t go well. She went to bed about 9:00 but was up at around 9:30 balled up in severe pain. It was like a 15 on a scale of 1 to 10. No matter what she did it wouldn’t let up. I kept switching hot water bottles for cold. One minute she’d be burning up and the next minute chilled. Her temperature was bouncing all over the place. Tried help with massages, laying with her, providing fresh towels, but Twisty has a mind of its own. After about an hour she fell asleep exhausted. It’s presently about 3:15 in the morning and I just checked on her to see if she had a fever. She was sleeping soundly but temps still high.465EFA25-8C63-4F9B-BB43-FA3CFA22CA2F

What an ordeal. She has a week off from treatments but we may be going to Petoskey anyways to see the doctors. It’s close to a couple hour ride. The pain is just too much. Will be calling again when their office opens to find out. We knew this battle would be difficult, but had no clue what to expect. We are hoping that after the whipple surgery the painful episodes will subside, though pretty sure the 4 months of chemo will still leave her with fatigue and such. At least the tumor will be out, no longer pushing on the surrounding nerves and organs. We’ll learn more about this within the next 5 weeks. Hopefully the chemo is shrinking the tumor so they can safely get to it. It’s pushed against her portal veins so is too risky to attempt right now.

Have no clue what to expect today. The longer she stays asleep the better. At least she is not experiencing these problems then. I know she’ll will beat this but it’s hell watching her go through it.

So many thoughts and concerns going on at one time. There will be better days but at the time it’s like one boxing round after another. Each one leaving a toll. Her weight is slipping because she has no desire to eat, though is because she knows how important it is to be healthy enough to endure the major surgery. A whipple surgery is very complicated, which will be explained later. It’ll take place in Grand Rapids. For today we’ll just take it moment by moment until the darkness of the evening comes.

At about 11:00 her Doctor in Petoskey said to get her in the ER here in the Soo. We checked in, now she has her pain under control and a CAT scan is next. Will know more soon. She wasn’t too thrilled to come here but enough was enough. Could not sit back and watch her suffer. Bobbi’s the type to bite the bullet but in a situation like this it isn’t something to be messed with.

Doctor just came in and explained that the CAT scan shows that the stent they put in her bile duct became dislodged and she’ll be transported to Petoskey by ambulance to have it fixed today. Knew that something was going on. At least it’s not a new mass or tumor! We can handle this one. It’s what it isn’t that provides the relief. Serious but she’ll probably be back home tomorrow. Time to pack the bags and meet the ambulance down there. Thank you for the concern. Onward with the battle.

Keep Pushing On

BCD1D353-725E-4686-88E1-7CDC7A7A494FToday the severe pain, which would come intermediately partially subsided. Though Twisty did show its urge and painful resistance last night really bad. Another endless night. Bobbi battled through it. The continuation of keeping pain Meds going on a 24 – hour basis worked for about 20 hours and then she was balled up with the severe wrenching again. Hot water bottles helped, changing positions, and gently messages got her though the ordeal. A fan lightly on and oils filling the air with defuser helps. The whole thing gets me so angry. They tell us to take her to the hospital if things take place again but we’ve been that route many times in the pass. Bright lights, a million questions while hurting, and waiting for different things. By that time the episodes become easier then your told you’ll be in the ER until a bed is available in a few hours. While laying on a bed with a hospital gown on freezing. Then the end result being told they can’t help much so a transfer to another hospital should take place. With me on palliative care pain medications are plenty, but you don’t want to use something that will make matters worse. It’s such a catch-22 situation. Billions and billions of dollars are spent in healthcare and yet people have to experience deliberating pain while the wheels work in approvals and decisions. Don’t get me wrong, we appreciate what can be done, and is, but I personally feel things could and should move much faster.

After the latest episode, which lasted a good half hour she got dressed into her nightwear and is relaxing comfortably on the recliner. Had we went to the hospital she’d be telling her story 10 different times to 10 different doctors all asking the same question as the previous one.

We talked for an hour and even joked some about the system. The tumor itself is acting up, and the cells next to it are dying and have nerves. We are picturing Twisty getting a shot of the Chemo and reacting with a temper tantrum. Her attitude is amazing. She simply deals with it, good humor, and tries to prepare for the next episode. Know it will come. When it decides to show its ugly side is on its own schedule.

Attitude and outlook is so important. She isn’t laying around whining with a poor me attitude. Not even a little. The effect on her, with hair loss, has been traumatic but reached the point where she really doesn’t give a damn about it. I told her the courage she has shown throughout this ordeal has made her more beautiful than any other time. I get why it bothers her. Women grow up seeing beauty on TV and billboards being brainwashed that beauty is having to look a certain way. Hair, weight, makeup, etc… Such a bunch of crap. It naturally freaks them out when they feel they aren’t living up to societies so called model image. She could give a damn now about any of it. She knows the people around her simply want her to get better and wants the same. But it is a process. There have been mood changes but we talk our way though them. Letting go of past bitterness in different ways, forgiving, and moving on with just getting better. She’s always treated everyone important and caring. The times it hasn’t been returned, or with “attitude” hurt her. A few times stand out when first moving up north. I’ve wanted to call these few people out… she simply asks me not to. People have to live with that guilt, if it even exists, so that’s on them. Life holds many unpleasant and confusing times. We all have this experience. From people we thought were friends, and even family. You forgive and move on. You do it for yourself. She once lived a little unsure about her ability to speak out, (though always strong and independent) afraid to hurt feelings or being a bother to others. That Bobbi is long gone. This experience has taught her how strong she really is, the people who actually care and give a damn, and she is going to come out of this stronger, wiser, and more sure of her abilities. I’m proud of her. I’ve always tried to help install a confidence in her, and remember teaching her to drive a huge big boy Harley when she expressed the desire. A few months later she was ripping down the highway with a friend to visit Nigeria Falls on our 840 pound beast.

Anyone thats meet or knows her instantly takes to her kind and caring ways. She had a good day today considering a few rough spots. Proud of her. Thank you again for the kind letters, cards, and calls. To both family and friends. If we can’t respond right away it’s because the days have often turned into nights and the nights into days. Thank you, it won’t be forgotten. You really learn who your friends are, by what they say and do when the chips are down, and feel very fortunate for the people in our lives. We are really missing the kids and grandchildren but hear all is well with them.

A Positive Attitude

September 29, 2017
The last couple of days seemed to have bleed into one long one. Bobbi’s 2nd chemo treatment was on Wednesday. We were hoping the side-effects wouldn’t be as severe but unfortunately not. Thursday wasn’t too bad. She got up early and drove over to mom’s apartment for coffee. Each of us probably slept a total of 60 minutes last night. Pain, nausea, muscle aches. This morning I went to the grocery store about 5am, while it was slow. Stocked up on fruits, liquids. Fever running a little high but within range they said to expect. Lori met us in Petoskey so that was very nice. The two made the best of the situation and I tried to give them their space. The area was in a dayroom type setting. Loud and lots of things taking place all over. Lori brought some great pumpkin muffins and that really made her day! All of us went out and had coffee after she checked in and between the time where her chemo was being prepared. Also stopped by an art gallery to deliver a picture Lori painted of Bobbi appropriately titled “Braveheart”. (Click here to see 2nd round of chemo with Lori) The chemo is mixed going by her latest lab work the day before, body weight, and side-effects from last week. An extra nausea medicine was given through her port.

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Had a nice weekend too. Sunday afternoon was nice. We drove over to Mikes house and had cheeseburgers while watching the Lions play on TV. He showed how his hunting cabin is coming along, a short trip from his home. It’s amazing how much work he finished on it since seeing it in July. He is really a good guy. All of her siblings are for that matter. All have called and inquired about how she’s doing. Bobbi’s attitude has been fantastic! She posted a message on Facybook letting friends know what was taking place. Someone had written her a message saying they heard she had brain or bone cancer so she wanted to nip the rumors in the rump right away. Her good friend Jamie is putting an event together, probably in the start of December so it’ll be nice for her to connect again with friends. And seeing family again will really pick up both our spirits. Know it’s difficult having so many miles apart so make short videos when we can. She sure is inspiring. She credits me for showing her how to deal with a health challenge but I can’t take any credit for that! I’d be a mess dealing with what she’s dealing with! She is truly blazing her own trail on this one. How she manages to get through things with a song and dance has me shaking my head in awe. Was a nice relaxing weekend. Not so good at the present moment but we’ll get through it. Love her so much and so glad our paths crossed 25 some years ago! Have added a lot of photography from over the years to these writings and her smile is as beautiful as the day we met. We are now a third away from finding out if the tumor has shrunk, and then the surgery probably in December. Hard not to worry about that. Trying to take things one day at a time. Had some Facytime with Cinneidi and she played the guitar for us, which was really nice!

She did get a chance to relay the experience she had at the War Memorial Hospital last week with the one nurse who said her teeth would fall out. The hospital called and inquired on how the experience went and she shared good except in regards to that ordeal. Didn’t want to mention any names, she’s not like that, but did relay the information. People each step of the way have been very nice. Her support team is strong and she IS going to beat this! Parting words for readers are to keep the faith and prayers coming, and a gigantic thank you,