#MehLife

             Yesterday, for the first time since surgery, Karen and I woke up before 10 a.m. Surgery has forced me to become a back sleeper and Karen to become more gassy during the sleep hours. I don't understand how surgery impacted her level of gas, but I can't sleep unless i'm on my side...so, as a result, I wasn't on a normal sleep schedule. 

            We woke up early to meet with our team at Sloan Kettering. The surgeon took a look at my drain and stitching and was pleased with how everything was healing. They decided to remove the drain, but leave in the stitches for another week. While I was speaking with him, the nurse practitioner removed the drain. I honestly didn't even know she had done this because the area where the drain is inserted into my side is numb as a result of them removing a large nerve from the area. I'm feeling pretty sensitive about "losing my nerve", so please refrain from puns you feel are clever or funny when you see me. Like don't say, "Hey, you got some nerve! Oh, wait...no you don't". Or don't say, "Hey, you had a nerve removed from your back during surgery!" Both are equally upsetting to me. The surgeon explained to us that he was able to get all of the cancerous masses out from underneath my arm and that the pathology had yet to come back. Believe it or not, they still do not know the exact name of the cancer that I have. The exact kind really does not matter at this point as it didn't back in December because they know the family of cancer that it is in and they are all treated the same way. He started to tell me the name of the cancer that they thought it was and it consisted of like 5 words, each longer than the one before it, and each I had never heard before. 

         We then moved on to the next topic which was what is next in the treatment process. He said that he would like to continue on with two more cycles of chemo, then we will return to NYC for more scans. If the adrenal glands are still shrinking, it sounds as if he will want to maintain chemo. If there isn't change or if the masses are growing, I think we will have surgery then. So, it's kind of a weird feeling to be pulling for the chemo to continue in it's effectiveness, but at the same time, I really want surgery to get these things out of there. So, during the 2 cycles, Karen and I are going to be looking for an endocrinologist in the area who can sit down and explain to us what life without adrenals or living "adrenal deficient" will be like. From what we understand, it is managed with medicine and a controlled diet. One thing we have learned that has stood out is that I will lose my "Fight or Flight" response. So if a person with a gun walks into a Denny's, my reaction won't be like everyone else's. Some people will want to attack the person toting the gun, others will run, and others will hide. I, will be flagging down the waitress to order a milkshake. Things won't bother me in the same way they used to. I think, for the most part, that is a good thing. People who are adrenal deficient are often said to be "blah" about many things. So, I have decided to jump on board with this "meh" term that was trending for a bit. Most likely am going to get a few shirts printed out with #meh printed out on them. Maybe i'll adopt some of the funny adverts that MetLife puts out there with the help of the Peanuts gang.  #MehLife. So for now, it's back home loving being back with Harper, seeing our dogs, and being able to sleep in our own bed. 

              So to wrap up, we are extremely thankful and feeling beyond blessed that we are back home after a fairly major surgery. I was in the best hands possible. The operation and the recovery have both been phenomenal. I cannot say enough how much the prayers, love, and various kinds of support from family and friends have meant to us. I'm not often serious, but hey...i'm being serious now. I love you all and appreciate everything you all do for me and my family. 

Talk to you all in a couple of cycles.

love- Brian

Surgery...1 down...1 to go. Do not scroll all the way down if you do NOT want to see pictures of the end result.

Well, the surgery was Monday morning and it was successful.

Around 10 pm on Sunday night, Karen and I were laying in bed watching television. There was a little bit of tension, but not between us or anything I think that we could specifically pinpoint, but I would guess that it was just the upcoming surgery and the time spent away from Harper/home.  We received a text message from Trey and Suzy Barnes around that time. The picture was of Suzy pointing at a sign that indicated that a flight headed to NYC was boarding soon. Can't really explain how we felt at that moment, but whatever tension or negative feelings that were lingering around the room were immediately gone. They arrived in NY around midnight and were there at the hospital the next morning to be there with us as I went through all the pre-op procedures. Friendship is something that you can never really put a cap on. Every time I think I know what my friends are capable of, I just have to set reset the expectations I have placed on people in general.

The surgery took a while. At the moment I can't remember exactly how long I was under, but I think it was like 4 hrs or so. I woke up in recovery, stayed there for a bit, then was moved into my overnight room. Pain wasn't as intense as I had anticipated. I have never been under the knife for a serious procedure before, so I had nothing to compare it to. 24 hrs after being moved into my room, I was discharged. The staff at Sloan was pleased with how I was healing and somehow felt confident in Karen taking the wheel from there on out. Fortunately, the Hope Lodge was able to give us a room because of a patient leaving early.

The room is really nice, spacious, and well, free. It's amazing that a place like this exists in the heart of NYC. We have a large one bedroom apt that has a private bathroom as well. We have to share the kitchen with others on the floor, but it's been nice seeing others here going through familiar treatments. I'm not saying it's nice to see people going though such things...just that it's nice to see people that understand the process.

Today we were visited by, well...a visiting nurse. He came by and went over the different sorts of things we can expect over the next week or so. In addition, he changed my dressing and measured my stitching. The length of the scar is going to be 15 inches. It's healing very well and he said there is some reason to be optimistic that we could have the stitching/drain removed by next Thursday. It's not something we are getting our hopes up on, but it is something to frame our mindset around...loosely.

So it is going to be a week or so in NYC, then we return. When we get back to St. Augustine, i'll start another cycle of chemo, then get back on with life. As we mentioned before, we will have to do a few cycles of chemo before we meet with NYC again to discuss the adrenal surgery.  Thanks so much for your support, love, and prayers. If you are scrolling, and do not care to see the handiwork of my surgeon...stop scrolling  now.

B

View from the front

View from the side/back

A giraffe's coffee would be cold by the time it reached the bottom of it's throat. Ever think about that? No, You only think about yourself.

             Well, it has been a long week here in New York. Not long in the it's dragging out sense, but long in the we're not used to being up here for this LONG. As you may have heard or read, we met with the surgeon this past Thursday. He explained that after reviewing both the most recent MRI and CT-Scans, surgery on the mass underneath my right arm was the best approach. That in itself was news that was unexpected and well, just amazing- but he also told us that the adrenals are still shrinking. Which is great news. To be honest, I wasn't 100% sure that would be the case after the switch to the new medicine. As many of you know, the new medicine hasn't been near as harsh on the system as the old chemo, so it's great to know it's working. That also is good news for surgery on the adrenals down the road. Previously, the surgeon had mentioned that surgery on the adrenals would be contingent upon the containment of the disease. So continued shrinking of the masses on the adrenals is obviously more than just containment. So, assuming all goes well with the surgery under my right arm, then it will be back home to do a few more rounds of chemo. During this time we will be looking for an endocrinologist to meet with. We need to sit down with one to get a better understanding about what life will be like living without my adrenal glands or living "adrenal deficient". From what I understand, it's not going to be a major transition, but it will require being on a variety of meds for the rest of my life. I can live with that. If Karen has to take one or two for her halitosis and nail fungus, then I can certainly take a daily Rx or two.

            So my mom and Roger are flying up today. We will see them tomorrow for dinner. Monday morning we are to be at the hospital at 7:30 for pre-op. Guessing surgery will follow about an hour or so after that. I'll be under for about 5 hours and the procedure will take about 3. Karen will be getting her manicure/pedicure down the road and should be done around 2 hours after I wake from the the procedure. She has promised to text me and check in with me from time to time.

            Prayers for a successful surgery and that it will leave me with a REALLY cool scar are appreciated. Thanks for all of your love and support. It's appreciated...unless your name is Suzy or Steve. Then no. It's not appreciated at all.

Pause...

After an early start at 3:45 this morning, a broken airplane, and a wife slept well on the plane(s) thanks to a belly still occupied with the comforts of Mac N Cheese, we finally got back home this afternoon.
As you know, yesterday was a mess. If you had told me that i'd be happy returning home to complete two more cycles of chemo before yesterday, I would have been more upset than Victor Simon when According to Jim was taken off the air. The bottom line is that this trip, specifically, the 5 hrs that we were "misinformed" served as a strong reminder that I should absolutely be thankful, at all times that I am making the progress that I have made. Keeping that mindset when entering conversations like the one we did yesterday, certainly keeps things in perspective. Nothing like thinking that 12 weeks of chemo had been for nothing and that they would have to resort to a Plan B to try and get things turned around to escort your thoughts to the same place you were in October when you were first diagnosed.
So again, we are back home. Being back with Harper and the dogs is all the distraction Karen needed to stop getting on me about starting smoking this week. So i'm going to put the blog on pause until we return to New York in May. It was, after all, started to keep those we don't get to see everyday in the loop about the latest trends in my relationship with sarcoma. So, thanks for all of your continued love and support. It really has made this process so much more manageable. Just kiddin' about the smoking thing.

Until May,

Brian

On the run...

       Well, before I get to the results, I should provide a little background as to what exactly we knew going up to NYC and what we hoped to hear. We knew that the adrenal masses (one on each) were "not viable". As it were explained to us, not viable means that they were not considered  functioning tumors. There were still cancer cells present, but the chemo had done it's job. That really was the most important element to the progress we had made. The adrenals were and are going to be the more complicated of the two surgeries.
This morning, we met with the oncologist who was working with Dr. B, our bff/oncologist in Jacksonville. she entered the room very positive, and excited saying that we had made good progress. Then she sat down after examining me and said, "Well, there doesn't appear to be very much change in your adrenal masses." I can't tell you how blown away we were and crushed, really. She went on to explain that with no change, she didn't see our surgeon going on with the surgery, but she of course would let him decide that.
Karen and I walked down the block to soak up our sorrow in a sandwich...or in Karen's case, a sandwich and some chips...and some gummy bears. We returned to the Sloan for our 1:45 appointment with the surgeon. We are called back at 4:00 to meet with him. He comes in and says, "Well, your adrenals look great and your arm mass has shrunk as well." Blown away, yet again, we say in unison, "But this morning the oncologist said that there was no change and that we had been misinformed". I know what you are thinking. "That's a lot to say in unison" but hey, it happened. He replied, "Yes, I heard about this morning. She made an honest mistake when reading the forms." I don't have time to get angry over this sort of thing. I honestly was so stoked that everything was going according to plan that not one negative thought has crossed my mind since hearing the good news.
The surgeon went on to say that the chemotherapy treatment was going so well that he did not want to operate...yet. He said, "I don't want to stop now...we have the cancer on the run". So he said that we WILL have the surgery in 8 weeks...2 cycles more. While it wasn't the news I was wanting to hear, after going through what we did today, I will take it. We are heading home tomorrow to see our reason for being (HARPER) and I will be back on chemo this Tuesday. It really does work out better in that we have a scheduled date for surgery and we can plan this whole thing out before we get here...unlike this time.
So, thank you all for your prayers and "good vibes". There was a period of about 5 hours when I cursed all of your for either lying or not doing those things hard enough or without rolling your eyes after doing so. Now that I realize you were true to your word, I say thanks and we love you.

Days 1 and 2

So we arrived in NY yesterday afternoon. Around halfway through the cab ride to the hotel, I was given a whisper from my tummy that the next 12 hrs or so would not go as I had planned. Around 4 in the morning, the evacuation notice had reached everything it was intended to reach and I was able to get some sleep.
Karen and I were both a little concerned that this bug would continue on into our afternoon scans, but that wasn't the case. I was weakened by this bug, but was able to lay in the CT machine, breathing and not breathing when prompted...all the while not leaving more on the machine than a picture of my inside.
After about 30 minutes of IV/scans, we left Sloan to find something to eat. Karen suggested we try a place that was on the way back to the hotel. It was delicious. There was a side of Mac N Cheese that we decided to share before our main course arrived. It was delicious. It wasn't going to cause any sort of breaking the seal I had worked so hard to create last night. The dish was filled with all sorts of different cheeses and the best part...well, the top was a nice layer of burnt cheese. About halfway through the Mac N Cheese, I reach for my water. The CT folks were adamant about me flushing out the IV that was used to create contrast in the scans. Before I can place the glass down to give myself open, prepared hands, I see Karen taking her spoon to scrape off the entire top of the burnt cheese layer that remained. After seeing how upset I was, Karen starts spewing off excuses and burnt cheese (as she couldn't wait to finish her food before cleaning her conscious) such as, "It's for your own good. Your tummy couldn't handle it",  "You were done. You needed to save room and focus on the main course" and, "I deserve this after you stole the covers because the stomach bug left you shaking".

Tomorrow we head into Sloan to find out the results of the scans. I'm praying that we find comfort in whatever direction the results send us, but also I'm hoping really hard that we are ready for surgery. I would really appreciate it that you all would do the same...once the UNF game is over, of course.