Well… Hello! Long time no talk! Nice to sit down and journal with you all again!! First and foremost… I am sooo sorry. I simply have no good excuses as to why it’s been 116 days since I posted an update to the site. I realize many have received updates from me, my wife or through other family and friends over the months… but that just doesn’t excuse my lack of updates. Nothin’ like gettin’ it from the horses mouth right? (Not sure I totally understand that reference… or if I’m even using it correctly… but I’ll roll with it) Anyway… I’m here now… Ready to type my update… After spending 30 minutes remembering my passwords to this site… And another 30 minutes re-learning how to post a new update… And another 60 minutes trying to actually have 30 minutes to sit down and type while I’m not helping my daughter with her Valentines for school or looking for the dog leash for my wife. But I’m actually ready now… So sit down… Buckle up and hold on tight… It’s been a wild few months. (It actually hasn’t been that wild… but sounds more exciting if I sell it that way)

RECAP: When I last left you… I had just returned from my hemicollectomy surgery… My pathology from that surgery had all come back negative for cancer. Meaning all 25 lymph nodes they pulled out with my colon were clean. The margins (ie. the places it attached to my small intestine, appendix and large intestine) of the colon section they removed were all clean. The cyto washings (ie. they ran some saline over exposed areas of my abdominal cavity and then had that tested for cancerous cells) all came back clean. Things were looking pretty good. I was waiting to hear back from the tumor board at UCSD to find out what their recommendations would be going forward. And I needed to find an oncologist to basically run my “cancer care” going forward.

ONCOLOGISTS (End of October): We met with two oncologists at the end of October. One from Providence and one from OHSU. We had chosen the Providence oncologist based on the fact that he was located in Newberg (which is a short 25 minute drive from our house on the way to the beach… lol) and we had a recommendation from the surgeon who performed my original appendectomy (whom we absolutely loved). He wasn’t a specialist in anything related to my specific type of cancer (gastro intestinal, colon, appendix)… but we kind of figured if the tumor board recommended chemo that it wouldn’t matter that much if my oncologist was a specialist or not. The OHSU doctor on the other hand was a specialist in GI cancers and also came recommended from multiple sources. We really did like both doctors a lot. However each experience with our first “interview” appointments were completely different.

The Providence appointment was very relaxed… calm… not rushed at all. He took the time to get to know me, my entire story and what i was looking for going forward. Almost too much… We were there over an hour and even spent time discussing how our kids spend too much time on their iPads… lol. As I mentioned… he wasn’t a specialist… and was up front about the fact that he had very little experience with appendiceal cancers specifically… but he was very nice and we both felt very comfortable with him. He didn’t have clear opinion on whether or not I should go forward with chemo and thought it would be best to wait to hear from the tumor board before going forward.

The oncologist with OHSU was also very nice. As I’ve mentioned in a previous post… the parking down at the South Waterfront OHSU offices is terrible… and even checking in waiting for the appointment seems a bit more rushed. But he was a specialist and it was obvious that he seemed to have quite a bit more knowledge about GI cancers in general. While the appointment was much quicker and we didn’t discuss my daughters Minecraft habits… We both felt good talking with someone who seemed to have a tighter grasp on my type of cancer specifically. While my wife differs on my opinion here… I got the feeling he was suggesting it would make sense for me to go forward with chemo. She insists he was really leaving it up to me though. It was at this appointment that he presented us with the fact that people diagnosed with Stage 2 poorly differentiated, signet ring cell, mucinous producing adenocarcinoma of the appendix… (lol… that’s a mouthful right?? But that’s what I’ve got.)… have a 5 year life expectancy of 27%. Yup… a 27% chance to make it 5 years… ouch!!! try hearing that one after a successful surgery where you’re feeling all high and mighty with clean lymph nodes and margins. Definitely brought it all back home… and reminded both of us that this cancer is as serious as it gets. I should make it clear that he wasn’t all “doom and gloom”. He was just much more familiar with how bad this can be.

Over dinner that afternoon… (and while I enjoyed a very strong drink… lol) We decided that because my cancer is both rare and serious… we thought it would be best to go forward with the OHSU specialist. I went in to both of those appointments thinking that I was 70-80% sure I was not going forward with chemo. Why subject myself to that if I’ve got zero signs of disease. My lymph nodes are clean… my margins were clean… my guts were gorgeous (according to my UCSD surgeon). But I left that appointment 80-90% sure I was going forward with chemo regardless. Why would I not do it was the question I was asking myself. We decided to wait and see what the tumor board said and make our final decision after that.

TUMOR BOARD (November):  Recovery from my surgery was all going pretty well in early November. I had planned to return to work during the second week of November… and now this “chemo question” was weighing pretty heavily on me. We had reached out to UCSD the first week in November trying to find out when the tumor board was going to review my case and we were told “next week”. We finally got an answer on November 9th. “The board is indecisive on a recommendation going forward”. I don’t recall if those were the exact words… but that was the jist of it. We were both pretty shocked. Here we decided to have my surgery done at a place that sees more appendix cancer than anywhere on the west coast… a team that specializes in HIPEC, peritoneal cancers and specifically appendix cancer. We chose them because of their expertise… and now they basically said “/shrug… hard to say… best if you choose”. It definitely took the wind out of our sails. I was really thinking that experts who’ve spent years studying and devoting their lives to fighting this disease would be better suited to advise me on my next course of action. I’m making this all sound very dramatic… and at the time… we were pretty upset. My wife reached out to UCSD… letting them know about how we felt. (by “letting them know how we felt” I mean she wrote a very scary email that I would not have wanted to receive from her… lol) And they responded honestly saying that my case was a very difficult one to advise. It’s rare to find my type of cancer before it has spread… and as we’ve heard so many times before… there is just no evidence one way or another. While I would have loved a resounding and unanimous “GO FORWARD WITH CHEMO”… I understand it must be difficult to recommend a course of treatment without any evidence to back it up. Instead… the decision truly is mine. Mine and my families decision on what we feel will give us the best chance going forward. Over the next couple weeks leading up to and through Thanksgiving we had many discussions and realized there really was only one choice to make. We called OHSU right after Thanksgiving to move forward with scheduling chemotherapy.

PLANNING CHEMO & AN UNPLANNED HICCUP (December): OHSU responded saying they would reach out to us regarding getting my surgery scheduled to have a port installed in my chest, which is the first step needed to get chemo started. Scheduling reached out to us and we got my port surgery scheduled for Friday, January 4th. This was the first week in December and I was about 6 weeks post-op from my hemicollectomy surgery. During a previous week I had woken with a low grade fever one morning. It wasn’t serious… my temp was reading 99.5… not quite breaking 100. (I was using one of those ear thermometers so it would bounce around 99… ). I didn’t think much of it at first… just figured I was getting a bit sick. I do have an 8 year old after all… people get sick all the time right? It lasted two days and was gone. Well the next week… it came back. Again… not a high fever… very low grade… but now I was feeling a bit achy down in my lower right abdominal area. Again… not a huge deal… I wasn’t doubled over… puking or anything… but myself (and everyone around me…lol) was screaming at me to get in and have it looked at. My problem was I don’t have a “general practitioner” yet… (long separate story… but I’ve tried to get an appointment… and it’s impossible… lol. The soonest appointment I could get with a GP was late February.) and I didn’t want to walk into an urgent care having to explain my entire story to them. “Hi… I’m josh… I have appendix cancer and I lost some colon down in San Diego… would you mind checking me out and see if there’s a problem?”. No thanks… So I reached out to my original surgeon at Providence who did my appendectomy (whom I already mentioned I love… lol… I call him Dr. Awesome… ). Anyway… I asked if he might be willing to do a “post-op” appointment for me since I didn’t feel like flying down to San Diego to get one at UCSD. He replied immediately saying he’d make room to see me that week. (Again… did I mention Dr. Awesome? lol) He also had me go in and get a CT scan before the appointment. Well… because I’m nosy… after my CT scan I went back in to get copies of my scan… and to get the radiologist’s report.

This was Thursday, December 13th. Due to the CT scan… I was going to get out of work a bit early… head home and start getting our Christmas tree ready to decorate. Instead I ended up spending 30 minutes sitting in the parking lot staring at the paper that said “1cm soft tissue growth near surgical site. Likely early recurrence for cancer…”. There was plenty of other words on there… but those were the ones I was focused on. I still went home and put the tree up… but the pep wasn’t quite in my step anymore… lol. My wife, the optimist, was sure it wasn’t anything to worry about. “It’s just swelling at the surgery site… c’mon… ” I really tried to agree with her… but that stupid piece of paper just wouldn’t get out of my mind. “Early recurrence for cancer…” My appointment was the following day with Dr. Awesome and it wasn’t terrible but not great either. Frankly… he thought the scans looked “interesting”. He isn’t a surgical oncologist… and he said as much. But he did tell us it was at the very site where they had reconnected my large and small intestine… and that it was odd. He wouldn’t even hedge a guess on whether or not it was cancer… but he also said that it would be very rare to have an infection this far out from surgery. I believe his words were something along the lines of… “I probably wouldn’t freak out just yet… but it’s interesting and you’ll definitely want to check it out more… Your oncologist will probably want to get a PET scan scheduled to look at it further…”.

So we contacted OHSU to let them know about the CT scan… and that it was recommended by our surgeon that he might want to get a PET scan scheduled. They responded by scheduling an appointment with my oncologist on Tuesday January 8th. (… I believe we also got a short response saying our “doctor would look at the case and get back to us.”) 2 weeks later we were past Christmas and approaching New Years… and we hadn’t heard back from OHSU regarding the PET scan. I’ve got my port installation surgery on the 4th and my oncologist appointment on the 8th… and I’m still living in the “unknown” on whether or not this “growth” was a recurrence or not. Finally the week before New Years (December 27th) we get an email from OHSU (not the doctor by the way… this is a short message from the nurse) that says my oncologist… “would like me to get a PET scan before my appointment on the 8th. Call the number below for scheduling”. Well… OHSU couldn’t fit me in for a PET scan for 3 weeks (January 15th). Really? Wow. So… let’s recap… we reached out to my oncologist on the 15th of December saying it’s been recommended that I get a PET scan… they responded by making an appointment for the 8th of January. Then waited two weeks (December 27th) to reach back out to me to tell me to get a PET scan before my appointment on the 8th of January. And now I can’t get one at your hospital until the 15th of January? I didn’t want to wait another two and a half weeks to get this figured out. My amazing wife went to work contacting every imaging center in the Portland area to find someplace that could squeeze me in. And of course… she found one. (Damn she’s good isn’t she? How lucky am I to have her on my side… ) She got me an appointment for Thursday, January 3rd… the day before my port surgery. So… I went in and got injected with radioactive material and laid perfectly still on a table for 30 minutes… lol. If you don’t know what a PET scan is… It’s basically a fancy CT scan where they inject you with radioactive tracers that supposedly can help identify whether a growth is cancer related or not.

Ports, Oncologists and Biopsies Oh My (January): The following day (January 4th) I checked in to OHSU to have my port surgery. I honestly had no idea what to expect. I sort of thought it was just a fancy IV… kind of like maybe getting my wisdom teeth pulled… lol… Oh how I was sorely mistaken. It’s a very serious procedure where I’m under full anesthesia and once again, get wheeled in to an operating room. But this was my third time in 4 months so I wasn’t too overly impressed with the process… lol. (I’m kidding… the entire surgical staff, both nurses and doctors were amazing… and once again… I really was sooo impressed with how well they took care of me.) Everything went fine with the surgery… and I went home late that afternoon with a nice cork in my chest ready to insert whatever crazy toxic cocktail they had planned for me.

I recovered over the weekend and had my appointment with my oncologist on Tuesday, January 8th. We kind of assumed we’d be finding answers about “the growth” and figured we’d be getting ready to start chemo. My wife had prepared a multitude of questions to ask about chemo, treatment going forward, questions about research she had done on appendix cancer etc. So I saddled up once again to go down in to the lions den of the South Waterfront OHSU building (did I mention it’s a miserable place to get to?) and checked in to the oddly rushed feeling of the office.

I remember this time specifically because as my wife and I were brought back to the patient room to wait for the doctor… I couldn’t for the life of me get a smile out of the nurse. lol Seriously… she took us in to the room… i had my blood pressure taken for the 240th time in the last 4 months and I could not get this girl to smile. (Not that this is an important detail… but after the really rough three weeks I’d had with “the growth”… my issues with OHSU and their lack of response about “the growth”… then driving down to this horrid location… the least she could do was give me a courtesy giggle when I make a cheesy joke. I totally understand that she doesn’t need to have her finger on the pulse of all my frustrations… but c’mon…. I’ve learned throughout all this that a little bedside manner goes a long way.) Anyway… my oncologist comes in and quickly begins telling me that the PET scan results are inconclusive. That there is “something” there… but we really don’t know what it is. It could be a resolving infection… It could be early recurrence of cancer… He’d talked with his radiologist and the radiologist was not willing to place an opinion either way on whether or not this was cancer. He went on to tell me that his radiologist was very confident that they could access the growth with a “CT guided needle biopsy”. If I agree to it… he’d have his nurse come in and get it scheduled with me. We tell him that we agree that I’m willing to do this. He says “great” puts his hand on the doorknob and looks back at us… “did you have any other questions?”. (At this point… He’s been in the room for about 6 minutes.) My wife looks down at the sheet full of questions in front of her and says… “uh yeah… I’ve got a few”. He closes the door… sits his bum on the edge of the patient bed and we peppered him with our questions. She asked about chemo and he said that it would really depend on how the results came back from the needle biopsy. We asked about at least getting the first treatment scheduled and then when the results came back from the biopsy we could cancel or alter it if he wanted to change the treatment. He said he’d really rather wait till after the biopsy. We asked how the chemo treatment works… who do I meet with during… who do I call if there’s a problem… etc. (now i understand my wife and i tend to be on the side of anal when it comes to information. But I can’t imagine that’s a rare thing in cases like mine.) He then told us he could call in a “social worker” to answer our questions. (that’s really the word he used… not sure if that’s an OHSU thing but that’s what he said). At that point… I was done… I told him… “no… that’s fine… let’s just get the biopsy scheduled”. He leaves… comes back and says… “Actually my head nurse is sick today… she says she’ll contact you with an appointment.” (His head nurse is different than the “smiles-a-lot” nurse we dealt with earlier by the way.) I paraphrased a lot of the conversation… and we did have more questions… but I’m trying to get across how we felt. We’ve waited weeks for this appointment and you’re just gonna come in and schedule a biopsy? Why didn’t you call me last week when you reviewed the PET scan and tell me this over the phone if you were going to be so brief with us in person? This was only the second time we had met with him and we were feeling like he was too busy for us. I must add… I really do like this guy… really. He’s a very nice guy and I’m sure he’s an exceptional oncologist… My wife and I both just feel that it’s the entire system at OHSU that creates this “rushed”, “busy” vibe that is contagious.

His head nurse didn’t contact me later… I actually just had an appointment pop up on “My Chart” that said I’d be going in at 6:30 am on Tuesday January 15th to have a very long, very thick needle inserted into the side of my abdominal cavity. (It didn’t really say that in My Chart… but that’s how i read it.) Which… by the way…. would have been the same day I had a PET scan at OHSU had I allowed them to schedule me. Which most likely would have put all of this out another two weeks waiting for results and probably scheduling the needle biopsy for the end of January.

Over that weekend… waiting for the needle biopsy, we really started to question our choice in going with OHSU. Our regrets were mainly that we didn’t interview more specialists… and give ourselves a chance to find someone we were really comfortable with. But… alas… I want to find out about this “soft tissue growth”! lol… It’s literally driving me mad wondering how out of control this thing is growing inside me. So we both just bit our lip and decided to wait till this next procedure was completed.

January 15th We drive back up the hill (all the these “procedures” are on top of the hill… which isn’t much better… but definitely better than the South Waterfront… lol) and check myself in one more time. Strip down… put on the gown… smile at my wife for my next iconic ‘hospital bed photo’ and get rolled away one more time. Again… I had no idea what to expect… I kind of thought it would be super fast… like a shot with a big needle… but no… again I was wrong… lol. This was the first time I got to have my port accessed. Which was kind of exciting… no need for the nurses to stab at my elbow pit… just plug in that little doo-hicky and the IV is good to go. They then load me up with fentanyl… lay me out on a board inside a big CT scanner and mount this grapefruit straw on a rack to insert inside me. It’s not quite as barbaric as I’m making it sound… but it’s very close… lol. I was to remain there for 38 minutes… which is no small feat when you’re hopped up on opioids. Not to mention… as talkative as I am… I was fighting to not chat all their ears off. But I kept scaring myself thinking “don’t distract them while they have that ball point pen stuck in my side”. Anyway… it went okay… but truthfully… of all the procedures I’ve had… that one hurt like a son-of-a-gun. I was limping for a week after that. Not sure if they went through a muscle or a nerve… but ouch! I was out of the hospital early that afternoon and headed home waiting for the results.

And I didn’t have to wait very long. Thursday, January 17th I got a very quick call from the head nurse (that was sick earlier). She told me that all 5 biopsies came back negative for cancer. I said “great news”… She said “yes… I’ll have the scheduling department contact you to get your first chemo scheduled”. I didn’t ask any questions of her… but I was taken back a little… cause my oncologist had made such a big deal of talking about treatment after we find out the results… but now I don’t even get to talk to him? It’s just “on to Chemo-Town”… lol.

Let’s not move beyond the fact that I was ELATED! The last month of my life swallowed by this stupid 1cm growth that might or might not be cancer. This stupid little growth that we had heard multiple times “is likely an early recurrence” wasn’t. It was just a stupid little growth. Whew… Double Whew! So needless to say… I went home and opened a very nice bottle of Chardonnay and drank to that stupid little growth. (And of course… my wife was right again… )

The next day… My wife and I both began discussing alternatives. The truth is… my plan was to go forward with chemo. There was absolutely no reason we should feel obligated to go forward with OHSU. So we reached out to a couple other resources to get some names. Although I didn’t mention it earlier I had gone to see an Integrative Doctor in November to establish someone who could help with the cancer fight in a “non chemo” kind of way. She’s at Providence and she’s great. We really like her and the whole experience at the clinic at Providence. The office is relaxed… The staff courtesy laughs at my jokes… and it’s always been a nice visit when I’ve seen her. She’s helped guide the supplements I take… recommends a cancer fighting diet… and once we knew for sure we were going forward with chemo we knew we would want to involve her for acupuncture, supplements to help with side effects etc. Anyway… I had seen her twice already and she was aware of my “small growth” saga… so I emailed her and asked if there was anyone she might recommend. She responded instantly… (and when I say she responded… I mean… she actually typed me an email response… just like Dr. Awesome. It really goes such a long way when you get responses like that… It feels like they are actually involved in your care.)… saying that a new oncologist who specialized in GI cancers had just come on at her clinic at Providence. Literally as I’m reading the email from the doctor… my wife calls. “Oh Hi… I just got off the phone with the clinic at Providence where we see your integrative doctor and I had a long conversation with the scheduling lady there… I love her by the way… she’s so great. Anyway… they just got a new GI specialist who literally started today… She’s all booked up but she helped me get you in to see her next week…” Anyway… you get the idea… my amazing wife did it again… lol. Even when I’m on the cutting edge of finding out some great new information… She beats me to it… and gets me an appointment for Wednesday, January 30th. Damn she’s good. A couple hours later my Integrative Doctor wrote me back (again… she emailed me herself) saying… “oh… I see you already made an appointment with her… I think you’ll love her.”

Meanwhile with OHSU… lol. We didn’t want to necessarily “fire them” just yet… we wanted to go meet some other oncologists and play the field a bit. After the nurse said she’d have scheduling contact me. I again had appointments pop up on “My Chart” for the following Friday. We had told them we didn’t want to do it on Friday but that didn’t seem to matter to them. So we cancelled that appointment and after some painful back and forth with scheduling… we set it up for Tuesday February 12th to start. At this point… we just wanted to have something on the books… but we were fairly certain we were going to be switching over to a different clinic. I then receive a very short email from the head nurse for my oncologist. Something to the effect of… “We noticed you postponed the start of your chemotherapy. Your oncologist wants you to know that all the studies show that adjuvent chemotherapy is shown to be most effective within 12 weeks of definitive surgery. If you want to follow your oncologists recommendation contact scheduling at the number below.” I probably don’t have the exact verbage… but I promise I’m not that far off. I was floored… what is she talking about? 12 weeks after surgery? Not one time in my two short meetings with him had he ever once mentioned 12 weeks. And after which surgery? My hemicollectomy had zero signs of cancer at all… are you talking about my appendectomy last August? That was the last “definitive surgery” that I’d had where cancer was present. Shouldn’t this have been something we talked about in October when I first visited you? I wasn’t even able to hit reply to the email. We had to form a new email that would go through the same gatekeepers all the others have. Anyway… long story short (way too late I know)… we replied with major frustration at that email… seeking an explanation to the awkwardly worded email the nurse had sent. And we got a response saying “Your doctor will call you this evening”. Which he did. (And this phone call was almost as long as both the appointments we had with him) The long-short of it was basically that he just didn’t want me putting it off too long. I didn’t really like his answers as to why he had never mentioned the 12 weeks before or why this was the first time he suddenly felt the urgency to reach out to me. We assured him we weren’t postponing it any further and were certainly going forward. We hung up knowing for certain that we had to find someone new.

We did make another appointment with Compass Oncology as well for the following week. But when I went in to see the “new” Providence oncologist… We were sold. She was great. She listened… she asked questions… She gave an upfront honest opinion. All the things we had wanted… and she did it in a way that didn’t make me feel like she had other places to be and other people to see… (and the nurse even smiled at my cheesy joke). She recommended I get started on chemo as soon as possible. We made an appointment to start my chemo on Tuesday February 5th.

I’m going to end this update here. I know I’m leaving everyone hanging on the first round of chemo… but I promise to get that posted in the next day or so. And I’m very sorry for such a long read… once I started… I just couldn’t stop typing. I could have broken this up over a few posts… but at this point it was really one big roller coaster leading up to chemo therapy… and it just felt right to put it all together. And don’t let me leave you all thinking we hate OHSU or anything… quite the contrary. I really did like the oncologist… a lot. I just can’t shake the feeling that it’s their system that created our frustration not the people who are in it. I dealt with many great people there in this last month and a half… and I certainly don’t mean this as a slight to anyone personally. But the truth is… with all the crap we already have to deal with from this stupid disease… why should the scheduling, appointments, emails, responses and information be so hard to come by? It shouldn’t… that should be the easy part. Those things should be the minutia… along with paperwork and insurance…lol. The hard part should be having to wake up every morning knowing there’s a crazed assassin sith lord possibly living inside my belly that wants to mow down my organs with a double bladed lightsaber. That should be what I’m worrying about. Not whether or not I can get the nurse taking my blood pressure to crack a smile.