I'm Home!
Low residue diet.
Come on scar tissue!
Here is to healing!
Love to you all
Janet

It's Monday.
An absolutely beautiful day here in Seattle and I think I might have the best room in this hospital. I started out in a room down the hall, a double room that was originally designed to be a single, how do you say...small, tight, cramped, no privacy! And, to make it worse (maybe?) I had the bed by the door, so no window at all. However, I was closer to the bathroom, a big bonus for me under any circumstances.

I am going to completely spare you any details about my roommate except for the fact that she really wanted to get the hell out of here and have a cigarette and she didn't use the bathroom so she didn't have to drag herself past me to get there. I don't want to talk about what she did have to do, ok? Thanks!There are many more facts that my visitors know about her...but like I said, I'll spare you.

She and I spent 2 nights as roommates. We chatted very briefly just a couple of times. She had a lovely son and a few other visitors so I didn't have to share my family! I politely mentioned to nurses and the good doctor that I would just really love a private room (as would every other patient in a double room) but could see for myself on my walk abouts that the hospital was very, very busy. No room in the inn. Suck it up, time. Luckily I spent most of the time I was in there with headphones in my ears during the day and earplugs at night. I also found the family room down the hall was usually empty with a beautiful sunshiny view of downtown and the harbor. I spent a good deal of time in there.

On Saturday morning I went on a good long walk, looping round and round in a figure eight around the west wing and the east wing of this floor. I noticed, especially in the other wing a number of empty rooms. When I saw my nurse in the hall I went up to her and politely mentioned how I could smell stale cigarettes in the room and saw some empty rooms and if it is possible, pretty please, could I....next thing I know we are moving down the hall to the corner room! Wow! It is stil a single room because it has some funky angled walls the would not allow 2 beds in here. It has a sweeping view from east of Mt. Rainier all the way south and west to the middle of downtown! Absolutely gorgeous! I can see Beacon Hill and the old Rainier Brewery, a peek-a-boo of Seahawks stadium, the harbor, the West Seattle bridge and Mt. Rainier in all it's glory! It is such a blessing to have this room, big enough for all of us to gather yesterday for the game and this glorious view that I swear makes me feel a little better every time I look out the window!

Bright and early, well actually dark and early, as he is known to do, Dr. Kaplan came knocking on my door. This is his protocol; his patients know he is going to arrive early and you need to be ready. I sat up, threw on my glasses, grabbed my notebook, started taking notes and asking the questions that we had collected over the weekend, just for him.

The good news, in spite of the blood that I passed last night, is that my blood count was stable. There are 2 more bags of blood for me in back up downstairs, just in case, but I don't need them at this point in time! Dr. Kaplan was ready to let me go home based on that, until he heard about the blood passed last night. It was enough that he declared one more night, at least, for sure. It is actually helpful to know that right up front in the morning, you just set your mind for that and make it be OK. Clear liquids only, too. Ok, I would rather have only clear liquids and heal my duodenum than have food and cause more damage...right...a no brainier! Off he went to work all day to see more cancer patients than any other doctor in their group because that is what he does. But, he'll be back tonight, before he heads home to the Isle of Mercer, as he likes to call it!

Later in the morning 2 women from GI came to visit. One was the first woman I met from that department my first day here, Dr. Anderson, the other was a nurse practitioner. What I know is that there are a number of doctors electronically talking about this situation. What they were able to tell me is that the radiologist who placed the coils has now chimed in on the conversation. Dr. Anderson assured me that the radiologist is giving this thorough and thoughtful attention and has included some more specifics into the electronic conversation. He named the arteries where the coils were placed. And, when they say coil, it may mean 1-3 coils as needed to "fill up" the space and block the blood flow. It can also mean coils and some kind of gel which was used in one of the arteries. He is also floating the idea that if the coil (or coils) work their way into the duodenum and out through my system they would be moving so gradually as to allow time for scar tissue to seal up the "hole" as they go and therefore not leave a big gaping hole in my gut. That's good to know, we were wondering about that! And, the good news is that they moved me to a full liquid diet. Now I can have ice cream and yogurt and soup and smoothies without lumps, pudding and custard, etc. I started with yogurt as I wanted to save my ice cream for some good stuff that Mike is picking up, right now on his way here. Betty is headed home from work to make butternut squash soup, I can't wait for that! So that is progress my friends!

For the record, I write this blog, I babble on in my wordy way because it is very cathartic. I have this need to record this information for myself. Today I spent some time reading back over my posts from the time I was going through the Y90 treatment. It was helpful to refresh my memory and recall some of the details from the procedures.
So this process is very cathartic and is a place for me to store some facts and some thoughts. I know, sometimes it is a lot of words. Like I said to Betty today, I'm not sure I would have time to read my blog!! So thank you for that!

Tonight Dr. Kaplan came back around. It is abundantly clear that NOONE wants to go in there after this tiny piece of titanium. We are absolutely, at this point in time, going to let it be. Because of that blood I passed last night they want to look at my ilium tomorrow. That is part of the lower intestine that you cannot see with either a colonoscopy or an endoscopy. It also happens to be the part of my body that was so damaged by the xeloda and put me in the hospital for nearly a month 2 years ago! So after midnight tonight I can have nothing by mouth and tomorrow they will use some kind of dye and I'll have an x-Ray of my lower intestines. If they see no problems, I get to go home. If they see something, well we'll cross that bridge if we have to.

Time for bed! Good night, I'm off to dream sweet dreams of scar tissue!
Love to you all,
Janet

PS Did you notice, I figured out how to post pictures using my iPad, no easy task...this thing is over 4 years old...that's old for an iPad! What I couldn't do is copy, cut and paste to move some stuff around...oh well, maybe next time!

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

Technical Difficulties
Today Maggie came by and I enlisted her help with the issues I've had with this blog. There are so many of  you who have let me know that they have not been able to respond to this blog on the blog. Then I cleared a bunch of cookies and I couldn't reply to my own blog!! Ridiculous!

So, today Maggie and I tried a few things and we ended up switching the account over to my google+ account. So, if you have a google account maybe you will be able to respond. On the computer I STILL cannot make it work... ridiculous! However when Maggie suggested I try on my phone, that worked. So, I was able to leave a reply to a reply.

All these technical difficulties reminded me to breathe deep and relax and then I remembered a link my sister recently sent me; one she uses for her meditation...

Enjoy! And by the way, NOT SUITABLE FOR CHILDREN!!

http://canyouactually.com/meditation/

Happy Saturday!
With love and laughter,
Janet

Hello my friends,

It has been awhile since I’ve posted, so I’ll do my best to catch you up.

As far as I can tell I am having minimal to no side effects from the Keytruda. I would say the first infusion left me feeling quite fatigued, but I had good energy Labor Day weekend after my second infusion on the 31st. After the Labor Day festivities (more about that later) I was completely wiped out, but I really can’t blame Keytruda for that!! I can only hope, pray and visualize that the immunotherapy is doing what it is designed to do on the inside. But, really I feel pretty good.

The pain continues to be buffered when it does raise it’s ugly head and to actually pop up less often. I’m now going with a theory that the pain that comes through to my chest is GERD or acid reflux. Why or how it starts (every time) in my back and moves into my chest no one has been able to explain, but we are now treating me and the pain as if I have acid reflux. When Dr. Kaplan said to take Zantac to try out this theory, Mike said, “Oh good! Now we can go to a buffet and you can eat whatever you want!” Yikes, I don’t think so. I have to admit if I have a pulled muscle or two (as my pain doctor was thinking) or acid reflux (as my oncologist now thinks) and I had an MRI, a bone scan and an endoscopy, then got addicted to and went through withdrawals from opioids to search out and treat the 2 most common afflictions in our society…well…that just feels ridiculous! My PT says they were taught not to look for the zebra…but I guess if you have stage 4 cancer they have to rule out the zebra…whatever! I have responded to the Gabepentin for nerve pain (all pain travels on nerves???) and I am responding to the Zantac along with some supplements that Dr. Standish recommended to go along with the GERD theory. My pain is, like I said, less often and less intense. I am also, for the most part, most days, trying to eat and drink like someone trying to avoid GERD symptoms. So, hopefully, in time it will go away completely. I’m a little embarrassed to think that all along it’s been a back ache and acid reflux…but there you have it! I still don’t understand the connection in spite of my vast amount of googling! Oh well, the body is a complex machine, to say the least!

Today is the first day of school for Seattle and I have to say I have no doubt that my decision was the right one. Dr. Standish gave me some advice that I am trying to heed. She says I’m likely to be looking for something to fill that void and that I should take time to heal, heal, heal and then open myself to the possibilities and see what happens. But, first, I need to heal. So, that is what I am doing. This month I have a PT and a massage therapy session each week. In addition I have a reflexology appointment this week. Starting yesterday I increased the time and distance in my morning walk with Wilson. Tricia is kicking it up for me in PT and I start back to pilates next week. So, I am deep into self help and healing and feeling pretty good about it. 

I did have a teacher nightmare, however, my subconscious clearly hasn't gotten the memo about me not returning to work: 

I was on a field trip and I couldn’t remember my password to open my phone to find a map for the bus driver. I could not remember how many kids I had in my class or any of their names! I was going to a park with the kids where there had been coyote sightings and I had to make sure I left with the same number of kids I came with and every time I tried to count them I got a different number! A classic August nightmare! I am thinking of you all my teacher friends and hoping that you are having a great day with your students! And especially to Lisa, Missa, Beth and James: I hope you love my little cuties! And, do let me know how they are doing!

I’m thinking of you all today!

Many of you regular readers know I have a sweet nephew, Jamie, who posts regularly on my blog. I’ve bugged him for years to bring his family to visit from Boulder. Finally, they flew up here to spend Labor Day weekend with us. On Thursday morning, the day after Keytruda, I picked them up from the airport: Jamie and Abbe along with Gaby (10), Annable (8), and Joshua who had just turned 4 last weekend. He greeted everyone he met by holding up 4 fingers and saying, “I’m four!” We had a fabulous time. On Thursday we went down to Alki and to Whales Tail park. On Friday I sent them downtown by water taxi. They had lunch at the Space  Needle and then went to the Aquarium. On Saturday we went to low tide at Constellation Park and saw an octopus!! Then we went to the Locks (two of my favorite Seattle activities). And on Sunday they went to the zoo. Of course that was followed by our biggest pizza party ever to celebrate Maggie’s 25th birthday. We really had a wonderful time and I tried to pace myself as best as possible! On Monday I crashed! Mike took them to the airport and we both just hung out the rest of the day. We did make an afternoon walk at Alki, but other than that we were both pretty spent. So, thank you Jamie! Thank you for coming and sharing your dear family! I love them all!!

So, that brings us up to date. Two more weeks until number 3 infusion of Jimmy Carter’s famous immunotherapy drug. I’m not sure if the good doctor will want to scan after infusion 3 or infusion 4. I’ll let you know.

In the meantime, happy back to school, everyone!

Lots of love,

Janet

Gaby, Joshua, Annable with June

It was alive, moving...about the size of a dinner plate!

A quick stop in Fremont for these three.

June IS a part of our family!