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.

28 thoughts on “You are Loved

  1. Why always so much uncertainty and a roller coaster of emotions with so many differing bits of information being given. And why so many needles!!! Christmas is there for you to enjoy, and I hope it gives you some more power to keep moving forward (not that you need more necessarily!)

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  2. I know how much this appointment was on your your minds–and that you were looking forward to it as it would give you a better idea of what was next. What an unexpected, heartbreaking result. But this didn’t stop you either! The spirit and the fight in the two of you is so inspiring! Holding you both close in my heart!

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    1. Thank you, life can sure throw fastballs in your way, but have to stay in batters box. She has a biopsy on the liver in morning so we traveled down to the town today so not have to deal with it 3 in morning. Tough wife I have and very blessed to now have 27 years together. Thank you for your taking the time to write. 🙂

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  3. Dear Mike and Bobbi,
    About them not using the chemo port to draw blood etc. I have had my port for nearly two years now and most of the time because I am being treated in a cancer center they access my port when they need to do blood draws etc. I do know that it has to be a special nurse to access the port, not every RN is trained to do it.
    Also the technician who does my Pet scans says they prefer to have direct access and he uses my arm, sometimes has trouble finding a vein (dehydrated from fasting) and uses the back of my hand. He is not trained to access the port. So that is probably why they don’t access Bobbi’s port. But go ahead and ask them. I know from experience that it would be less painful.
    I also have trouble getting the doctors to talk to one another and each of them has a different way of interpreting test results. I’m sure you also wish they were on the same page.
    I am thankful that the cancer center is less than two miles from my home (a ten minute drive) but even with that I have trouble with transportation since at this time I can’t drive (metastasis in my left hip bone, walk with a rollator). A taxi isn’t expensive but sometimes I have to go to downtown Seattle…about 45 minutes with decent traffic and that’s where I have problems as a taxi would cost $50 each way.. I can sometimes get a driver through a volunteer place but it’s a pain to have to rely on other people for something I’ve always been able to do myself. Those appointments get rescheduled because $100 for a trip downtown for something that isn’t even entertaining (a show, dinner) is out of my budget. Opps. Don’t mean to whine about me, this blog is about you. I do have a good thing coming up, a gentleman friend is taking me out to dinner for my birthday on Tuesday evening.

    Just keep loving and holding each other. And nice head massages with some lovely oil will keep those beautiful bald heads feeling fine.
    Happy holidays to you and yours.
    Michelle and the boys (my two cats).

    Liked by 2 people

    1. Thank you so much for sharing this! Makes a lot of sense now and understand things. Hope your battle is one of better days than hardships. Seems hard to see the good ones when simple tasks are difficult. Appreciate your taking the time in sharing! Have a Merry Christmas season!! ☃️🎄

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      1. I really would like to be close enough to give you both a big hug and kiss. Right now I can’t do much beside that. I get plenty of love and support from my friends from all over the world that I found through blogging. So blogging does help…..even when the news isn’t the best. But I can tell from your photos that you know how to find the beauty….particularly in your lovely lady.
        M.

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      2. I’ve thought a lot on your notes and really appreciate them. Please don’t look at this as your feeling guilty about whining or it’s about us and not you. This is about every warrior who is dealing with the black and white, sometimes colored, imaging that is faceless from the outside. Cancer. The system is operated by money and it’s sad. There should be discounts for everything when another human being is struggling to stay alive. It angers me to see it different. When I began my cardiac battles, 27 hospitalizations, 19 stents, EECP, radiation, months for rehab it sent us into bankruptcy and the loss of our home from bills. After getting back to simply having our own roof over our heads my wife began her battle. Money times before treatments the different institutions first questions were about money. We are fortunate now to be on Medicaid but that also limits many things. It’s a struggle against disease and society. That’s why it’s important to try and block out the stress and find some pleasure in something. Otherwise the desire for all of it to end, to welcome the crossing of going to the other side becomes stronger than the will to battle on. You are important, we all are, are are people who deserve, have earned, respect and dignity. The word warrior I don’t use lightly. You are such and hold your head up high and know this. The American Cancer Society has helped at different times with a lot of things. They might help with transportation. Worth a call to them. Again, thank you for sharing and be strong. I can’t tell you why, because half the time I haven’t an idea how or why, but there are moments that make life worth it.

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    1. Yes, it was very frustrating to say the least and you can bet some are being notified and the ship corrected. Shouldn’t have to learn this information like one has already been aware of it, when weren’t. Thanks Jean

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  4. Mike always, always, always, follow your gut. Worrying about the holidays will become less worry and more merry, with a well defined plan based on well defined results. I read the comments of the radiology doctor and the oncologists and compare my last scan, which is critical because who can remember everything when you’re standing there feeling like a deer in the operating room lights. If you can send the scans elsewhere for another opinion, do it, because results should never come back confusing.

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  5. No words can convey the Love I have for you big Sister. I have always looked up to you and Admired the Smart, Kind, Compassionate, beautiful sister you are. I am truly blessed to have you in my life.
    Our continued Prayers for you as you fight to beat Twisty and it’s pals into submission.
    Thanks for taking care of my sister Mike.
    With Love and hugs

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  6. Wow is all I can say, but I do know Mike your Bobbi is a fighter and I send prayers strongly to help you both to go into this war Bobbie hugs 🤗 prayers keep strong 💪 don’t give up❤️❤️❤️

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