I need a word that means baffled and pissed...
Because I am baffled and pissed!
The good news is that this is not about more cancer.
But, it is one for the books...

Part One
I Can't Believe it Really IS GERD!
For the last few weeks I have been focusing on my diet and trying to figure out if I really have GERD. I'm not sure when the pain returned on a daily routine, but it had. Ever since I started Gabepentin the pain was always less, more tolerable, but it was there, everyday, in the afternoon or the middle of the night, or both. Recently I noticed some food patterns so decided to restrict myself to a very bland diet. I have to admit, as sick as this sounds, I was a little pissed off that it worked! I just couldn't believe after all I went through that it was GERD! But six pain free days in a row, I could not dispute the evidence!! I knew if I went enough days on a bland diet my esophagus would heal and I could gradually add in some chilies and spices. Hopeful, optimistic...right?

Part Two
The Red Herring
I've been wanting to paint the kids rooms for years but painting a room takes time and energy-at the same time (unless someone does it for you...that was awesome, thanks Matt). I have not had time and energy at the same time for years. I was super psyched when time and energy arrived together and I was ready to paint! I was making it easy on myself with a light butter cream yellow I'd used in the past. Their rooms have literally no trim and I decided to paint the walls and ceiling the same color since it is such a calm neutral color. Mike helped with the prep work and I actually enjoy the painting part. I downloaded an audiobook to listen to and it makes the work so enjoyable, satisfying.

I started with a small bite, the inside of Michael's closet. I probably could have gotten away with one coat, but then I thought, I'm never going to paint this closest again, so I went ahead and painted 2 coats. I was so pleased with the end results!

At the same time we are having the outside of our house painted (there is not enough time or energy or a story compelling enough to ever make me want to do that!!!). So I decided once the closet was done I should wait to start the walls not knowing when or for how long the windows would be covered. Also Mike and I had plans to head out of town this weekend. In the interest of sprucing up Michaels room I decided to tackle the sticky gooey patches on his closet door that have been there since we moved in 19 years ago! I had my Goo Gone, a rag for scrubbing, a bucket of warm soapy water and a wet rag, turned my audiobook on and started scrubbing. The day was cool and I had not thought to open the window but after about 10 minutes I realized I should, and I did. I worked for about 30 minutes or so, enjoying the story and the fruits of my labor.

All of a sudden I was overwhelmed by the fumes and became lightheaded and nauseous.  I realized it was bad enough I should stop. I turned on the fan, threw the rag outside, changed my clothes and went to lie down to let this pass. After 20 minutes or so I felt worse, I felt ill and sat up to make my way into the bathroom. Just outside our bedroom door I had to lie down on the floor so I wouldn't pass out. This is not good, but I am stubborn as hell when it comes to this kind of shit (for better and worse)! I was in a cold sweat and gradually made my way down to the bathroom. I called Mike, he was nearly home. I warned him about how he would find me. Mike raced in and of course I downplayed it, though I couldn't get up. I sat up for a minute but had to lie back down. Mike called 911. The kind and caring firefighters showed up in a timely way and by then I was starting to feel better. I pinked up while they were there and was able to sit in a chair. With a promise we would call them back if it happened again they left us at home.

I felt funky all evening, not ever as ill, but funky for sure. The next day I was scheduled for my third round of immunotherapy and I was planning to drive myself as I had three weeks ago. The thought of that, at this point was stressing me out so I asked Mike if he could change his schedule and take me. Of course he did.

I didn't sleep much and got up numerous times in the night, each time making sure I was ok before I stood up and as I made my way down the hall. By morning I was sure this episode had passed, though I was not convinced enough to want to drive myself to my appointment.

Part Three
Shit
TMI warning...I have to talk about poop again!! Yep, you guessed it: the black poop of death (see my first ever blog entry for more info on BPOD). BPOD revisited and this time it had bits of red blood as well. Not good. I felt weak, but not dizzy. I called Dr. Kaplan and we agreed that if I started to feel dizzy I should go right to the ER, otherwise I should go get my blood draw, and see him at 9:30 as was the plan. I took a nice long shower and ate a big fat piece of toast loaded with peanut butter and Lizzy's home made plum jam (when you have the black poop of death you never know when you might get a shower or food again!!). We headed out. I was able to get through a blood draw and during my appointment with Dr. Kaplan we agreed I should get admitted so I could get an endoscopy that day or the next. As an outpatient I likely would have had to wait more than a week. So, we waited in his office until my reservation was ready. We walked through the skybridge, up to the 12th floor, and here I am.

Part Four
Coping
My goal has been to not freak out. Recently, I have been using the Headspace app to practice meditation. They suggest as a strategy to help when your mind wanders to think of your thoughts as cars on the highway. You try to watch your thoughts go by. Don't follow your thoughts down the road, just let them go. When you realize you've jumped in a car, you hop right back out, focus on your breathing and when thoughts return, again, try to watch them pass. This practice has really helped me during this ordeal. Obviously, I could think of a thousand horrible things that are happening inside me to cause this, and what we might do and what possible outcomes might be; that would be easy and so freaking awful! So, I'm working diligently to treat those scenarios as big fat ugly trucks. I'm not jumping in that rattletrap!!!! Who wants to follow that scenario down the road? Not me! For the most part, most of the time, this is working for me. One step at a time. Don't freak out we don't know enough.

Part Five
The Hospital
The first doc I saw was from the GI department. A woman who was easy to talk to, listened to me and seemed highly capable. We agreed on a first step. Because I had black and red blood I had to get the double whammy: an endoscopy and a colonoscopy. Lucky me! No more food for me (that toast was so yummy!) clear liquids only until midnight. Then nothing. At 5:00 my nurse delivered a 4 liter jug-o-fun! YUK! It was truly vile. 4 liters of yuk to down between five o'clock and midnight. There is no way to make this next part pretty, so I'll make it short; I pooped dark maroon blood throughout the evening, night and into the next day.

My procedures were scheduled for 2:00 Friday. While I waited I was given 2 bags of blood to compensate for blood loss (thanks to all you blood donors out there!) and mostly stayed in bed listening to my audiobook. Nothing by mouth until after the procedure. I'm grateful that the doctors in that department were running on time and that they listened and HEARD me when I reported that I'd felt so much pain during endoscopes in the past. I did not have the sedatives usually used for such procedures, instead they gave me full anesthesia, propofol, which was a beautiful experience for me. I almost remember falling under the spell for about 7 seconds, but the best part was recovering so very quickly and easily. You might recall (we sure do!) that it took me hours to come out of the anesthesia that was used during my microwave ablation last summer. Propofol was fabulous; quick under and quick recovery.

Dr. Chang introduced himself prior to the procedures and then gave us the results. No cancer, that is the good news but in my duodenum there is an ulcer. The ulcer is what caused the blood but fortunately at that point in time it had stopped bleeding. Unfortunately, in the middle of that ulcer he saw two metal rings, right there, sticking through my duodenum!! Hmmm...you know where they came from right? That's right...one (or two they're not sure) of the titanium coils that was inserted into the vein going into my liver during the Y-90 mapping procedure in February has migrated to my duodenum. That's right. At least one of the two coils blocking blood flow into my liver has now penetrated my duodenum and is blocking the blood flow at that point. FYI, the way I was taught to say duodenum is not how medical professionals say it these days. They have the emphasis on a different syllable. It is a tricky word!

Since then, Friday afternoon, we have been on a roller coaster. We've talked to Dr. Chang a couple of times. We saw Dr. Kaplan Friday evening. Dr. Mawad was Dr. Kaplan's weekend representative, I've talked to her 2 or 3 times and I've talked with 3 different surgeons. After each of these conversations there is a better level of understanding and of course more questions. Always more questions.

Part Six
What We Think We Know
I didn't think it was GERD...but really, it didn't have to be this weird!
At least one of the coils is embedded in my duodenum which is really really close to where it was placed. It has most likely been there for some time. (Like since March when the pain started and I asked, "could one of the coils have come loose?") This is very, very unusual, but it has happened before. The best solution is for the ulcer to heal and for scar tissue to form around the coil and just stay there forever. A second, less pleasant solution is for it to continue working its way into my duodenum and then get carried along through my intestines and out. Of course this is likely to continue to cause pain and bleeding all of which will have to be monitored and dealt with closely and carefully. The last resort would be to go in surgically and remove it. It is in a very tricky spot and seeing as it is embedded, well, they would have to get it "unstuck" and there could likely be a good deal of bleeding. In addition, they, we, need to come up with a plan so that if the ulcer doesn't heal and I continue to bleed, well, something has to happen.

I have started two new medications to try and help heal the ulcer. I am on a clear liquid diet so that my duodenum doesn't have to work which aggravates the ulcer. I had the procedures Friday and continued to pass blood off and on all day yesterday. But last night and through today I had no more bleeding. Unfortunately, a couple of hours ago I passed more blood. So, let the healing begin again!!

So, my friends, I ask you to visualize scar tissue for me. Wrap that titanium in scar tissue and let it be! That is the goal for now.

As far as treatment, immunotherapy, well we haven't even talked about that, yet. I have no idea when I'll get to resume treatment.

Part Seven
This Place
Once again, I have to sing the praises of the staff at Swedish Hospital. I am profoundly amazed by the quality of care from the individuals I meet. I know I've babbled on but I just have to tell you about Jaja and Yaya. Yes, today, Jaja came in to cover my port with plastic bandages so I could shower. At the same time Yaya came in with my clean linens and clothes. Jaja is from Brazil and she was the charge nurse today. Yaya is from Gambia and he was one of the nursing assistants. They said they love going into rooms together and introducing  themselves! You really can't make that up!

My nurse today was Miriam. She is from Nigeria and learned English there. She moved to New Jersey when she was 19 and worked with a woman from Jamaica. She totally sounds like she is from Jamaica. She went to school in Kansas, met up with a man she grew up with in Nigeria, now they are married and have 3 kids. Crazy! She was lovely; warm and caring with a bright and easy laugh. I love meeting all these people! What an amazing hospital we have here!

There are so many twists and turns in this story that I had to leave out. So many details and bits of information about these coils, their size and shape and how they moved, and all the theories we've come up with. We are baffled and pissed!

I don't know what tomorrow brings but I had a great day today. Mike, Betty, Jennifer, Michael, Maggie and Eva were all here for the Seahawks Game. We laughed and they ate and I drank lots of clear liquids and we had a great day!

Yesterday morning I met with 2 of the surgeons who were explaining how rare and tricky this is and I said, "I will get through this and you will look back and say, she was right!" I'll leave you with that and I'll be back in a day or two.
Lots of Love,
Janet
 PS I am posting from my very old iPad and it is slow and tricky. I am also posting late on Sunday without my editor around to assist. So, please overlook spelling, grammar, etc...just want to get this story out into the world! oxoxoxo