July 31, 2018 - Trip to Houston / 4th Transplant Consult at MD Anderson

On July 20 we traveled to Houston, TX to be evaluated for transplant at MD Anderson Cancer Center. This is one of the top cancer centers in the world, and Dr. Bixby sent me here because they are the best.

We planned the trip so that we could have the weekend to explore Houston a little before our appointment on Monday. We have been through a lot so far this year and figured if we had to travel anyway, we deserved to make this into a mini-vacation. 

We purchased Houston City Pass and throughout our trip went to The Museum of Natural History, The Houston Zoo, NASA/Houston Space Station, and Houston Downtown Aquarium. It was very exhausting for me, but I refuse to let this disease keep me from experiencing life. We also ate a lot of BBQ and Tex Mex that was recommended to us, the best of which was Papasitos Cantina - the best meal I've ever had probably. 

MD Anderson was an interesting experience. You don't feel as personalized service as you do at UofM. The doctor we met with, Dr. Alousi, happened to be from Royal Oak. It was funny because this was the 2nd time we had traveled to see a specialist out of state that ended up being from Michigan (the first was Dr. Ramirez in New Orleans for NET). We talked with him for a long time and he agreed that transplant was my best option. I 

July 19, 2018 - Transplant Consult #3 Henry Ford Hospital

Wedding Anniversary 

The day after being released from the hospital for my round 2 consolidation chemo Alan and I celebrated our 2nd wedding anniversary. We went for a nice breakfast at Toast in Birmingham, drove to Independence Oaks, where our wedding was at, and took some pictures in and around the gazebo where we got married. We stopped at Great Lakes Crossing and saw the movie American Animals (it was weird) and then walked the loop around the mall. I was getting pretty winded on our walk and wishing for my walker or a scooter, which was a good sign that my blood counts were already starting to drop. After leaving the mall we drove up and down the Big Beaver corridor in Troy debating where we wanted to eat our anniversary dinner, and eventually settled on the very unglamorous Buffalo Wild Wings. All in all it was a very nice day for us, and we were happy and grateful for the two years of marriage that we have had, despite all of the challenges we have faced through out this time.

Post-Consolidation Round 2 Fever and hospital stay

Starting on Thursday I felt a little like I was getting a fever. However, it never spiked above 100.5. I went in on Friday for my blood draw and ended up getting a platelet transfusion. They said that my hemoglobin wasn't low enough for a transfusion despite the fact that I was feeling like I couldn't breathe at all when I was standing. The platelets did help a little bit with this though, so I guess low platelets can also cause shortness of breath, not just hemoglobin.

On Saturday evening my fever finally ended up spiking at 100.6, so we headed to the ER. I remembered that last time by the time I got to Ann Arbor my temp was 104 and I had such a high heart rate, and I could already feel my heart pounding, so we opted to go to the ER at Beaumont instead of driving all the way to UofM. Once there they triaged me, drew blood cultures, hooked me up to IV fluids and antibiotics, then arranged for me to be transferred to UofM. I took my first ride in an ambulance to get there, and was put in a holding room in the ER. I was finally admitted to a room in the Leukemia/Bone Marrow Transplant floor around 7am after having first gone to the ER at Beaumont around 8pm.

My blood cultures were all negative so the doctors thoughts were that my fever spiked due to the viral respiratory cold that I had been dealing with since the week before I started chemo (I tested positive for para influenza type 3 both at the start of my chemo round 2 and when admitted for fever). Or it could be fever of unknown origin which just spontaneously develops because I had no neutrophils/white blood cells. Once I was on fluids and antibiotics my fever never spiked again so I just hung out a few days and then once my counts started to increase I went home on Thursday (July 12)

Bone Marrow Transplant Opinion #3 - Henry Ford Hospital

So I mentioned last time that Dr. Bixby at UofM still wanted me to go to some additional consultations to discuss my transplant eligibility despite UofM saying they would not consider me. He had his office set these appointments up for me, one locally at Henry Ford, which is the only other transplant option in Michigan, and another at MD Anderson.

My appointment at Henry Ford was this past Monday, July 16 with Dr. Peres. I have to say we weren't really looking forward to the appointment because we don't consider Henry Ford to be a very good hospital. From the moment you park in the structure and get in the elevator to go to the building, to me everything just feels dirty. But Dr. Bixby really wanted me to go meet with the transplant doctor here, so we figured we might as well go.

From the beginning, it seemed like everything was against us going through. Over the weekend I had gotten a flat tire which we dropped off Monday morning to be fixed, and it wasn't ready yet by the time of my appointment. This meant we had to take Alan's car, which doesn't have air conditioning, on a 90 degree day. Then, while we were on the freeway there was a major backup. When we finally came to what was causing it we saw a semi truck blocking the 2 left lanes and a car that the truck had completely destroyed. Once we passed this traffic started moving along again, but we were already late for the appointment due to the delay. Soon after this, we felt the temperature drop by about 10 degrees and all of a sudden it was pouring rain. I'm talking about complete white out conditions, we could not see where we were going. All of this while we are trying to take exits to merge onto freeways that we don't typically travel on (75 to Davison and Davison to the Lodge) so not having visibility in an unfamiliar area was a major issue. Finally we made it to the hospital, arriving 30 minutes late for my appointment. A drive that should have taken 15-20 minutes had taken nearly an hour.

So we wait and finally get to meet with the doctor. He seemed really knowledgeable, and he was the first person to not say NO. 

We talked about all the same things that I talked about with previous doctors: the risks of the transplant and the extra associated risks with the neuroendocrine carcinoma. That there are no medical studies available to show what the existing NEC tumors will do while I am on immuno-suppressant drugs for the transplant, but that the likely scenario is that a suppressed immune system will cause the tumors to grow. And that if that were to happen, there would be nothing they could do for me at that time.

Despite all of this, Dr. Peres said that there are a list of conditions that if we were able to meet all of them, we could re-visit this topic of transplant and decide at that time whether it is the best option or not. Essentially the further out we are from my having completed the chemo for the neuroendocrine carcinoma the more comfortable he would be doing the transplant. Here are some of the items on his check list.

1) Complete the remaining two cycles of high-dose cytarabine consolidation chemotherapy and still be in remission from leukemia at that time.

2) Go for my next follow up PET scan for my NEC in October, and receive another clean report with no FDG uptake and no evidence that the tumors have grown at all.

3) Most likely if #2 is met, he will want to do a new biopsy of the remaining spots on my liver to confirm whether they show any evidence of the NEC or are just hemangiomas, which are clusters of blood vessels, or scar tissue, or anything else other than cancer. The biopsy results have to come back not showing any signs of the cancer.

4) All other health checks on my heart, kidney function, etc need to come back good. In other words I need to be in very good health and the chemo needs to have not caused any catastrophic damage to my organs. These are checks that everyone going through a transplant needs to meet, but they would hold me to extra high standards.

5) If all other conditions are met and we move forward with a transplant, he would only perform the transplant if we are able to find a 10/10 match. Many people are able to go through with transplant with a less than complete match, from a parent or child or less than full match unrelated donor. However with all the other risks of complication for my case, he would only feel comfortable moving forward if we found a 100% match, which would lower the risk of other complications and of developing GVHD.

So, its not a yes, but its not a no. If all of the conditions are met a big part of the decision will come down to Alan and I making the choice of whether I want to take the risk of the transplant or not. As I've said before and will say again, I'm not currently feeling 100% confident that I do want to take the risk.

My thoughts on transplant

Dr. Bixby says that without the transplant, there is a 95% chance that the leukemia will come back. And in most cases it comes back within less than a year. At that point I could try to do more chemo, but the chances of the chemo working during a relapse are less than the chances were for me to get into remission in the first place (which was low to begin with due to the fact that the AML was caused by the previous chemo) 

With the transplant, there is still about a 65% chance that the leukemia comes back. Which is pretty high, considering the risks that I would be taking, and the sacrifice to quality of life that I would be making in order to get the transplant. Dr. Peres said that while that is the case, with the transplant I would be looking at a longer time in remission before potential relapse, years instead of months. However, I have to wonder if that is really the case.

I have joined several facebook support groups for AML patients and caregivers, and I have read so many stories through there of people who did the consolidation chemo and were given the option to go to transplant or not. At the time they opted to go to transplant to supposedly decrease their chance of relapse, they were enjoying a fairly good quality of life. Then they go through the transplant and had complications which severely diminished their quality of life. Or they had a relapse within 4-6 months of having the transplant, while still recovering from the transplant.

These stories terrify me. They make the decision of whether or not I want to pursue transplant so daunting. Because if I am in remission and enjoying a good quality of life, do I want to sacrifice that for something that is kind of experimental (given my history) and also not a guaranteed cure? Would I be better off to enjoy 6 or 9 months of happiness and then have a relapse, than to put myself through the torture of a transplant and still potentially have the same outcome?

These are questions that I don't know how to answer. I don't want to die. I want to do everything I can to prolong my life. But if I have to die, I want to say that I was living life while it happened. Not that I was pathetic and miserable in a hospital bed. So, these are the stories and thoughts and decisions that keep me up at night.

Tomorrow we head to Houston. We will (hopefully) spend the weekend sight seeing before meeting with Dr. Alousi at MD Anderson on Monday morning. I will write another blog post next week about our experience there.

Thanks for reading!

July 1, 2018 - F*ck this mountain....

Another one of those jump-around, too many topics to cover type blogs. 

First, I want to share a quote about remission that I saw the other day. I feel like by mentioning that my most recent biopsy report said "remission" that people thought that I am cured, that everything is going to be OK now. And while I desperately wish for that to be the case, I feel bad constantly saying "well it's good but..." so I felt like this was a good quote to explain it better: 

"Remission does not mean cured. Remission is a temporary recovery. A decrease in or disappearance of signs and symptoms of cancer. In complete remission, cancer still may be in the body."

Fun times on recovered Neutrophils....

I was released from my stay at UofM for Neutropenic Fever and E-coli infection on Saturday, June 9. Since my counts were coming up, and my neutrophil count was 0.8 on Saturday morning, I decided to go straight to my cousin's graduation party from the hospital in order to spend time with family. 

Alan and I went out to do something almost every day. Thank goodness for the movie pass, we were saw 7 movies between June 11 and June 27. We also went for several walks through downtown royal oak while grabbing lunch or ice cream. Thankful for the moderate temperature days we were able to enjoy during this time, as heat and humidity are extra rough on me during this time. 

I was also able to participate in some other fun events like my friend Nikki's bridal shower, a bbq with friends, and a big birthday bash to celebrate my mom's 60th. 

If anyone is interested, I can definitely do more fun things when my counts recover this time (probably around July 16) as long as it doesn't require me doing much driving. So if someone wants to come over or go out for food/activities locally in Royal Oak in a couple weeks, I'm probably just staring at the wall and you should call me. 

More Viral Respiratory Infections

Like clockwork, a few days prior to when I was due to go back for my next round of chemo, I began to develop symptoms of a head cold/sinus infection. I feel like I've been constantly plagued by something sinusy since around Christmas and it's really getting old. Every time it comes on, it starts out as a couple days of sore throat. Then progresses into the streams of snot being blown from my nose (or refusing to be blown), the ear popping, then the cough. And once everything else starts to subside the cough just lingers. Forever. Until one day you realize it's mostly gone, but then 2 days later here comes that sore throat, back to start the whole cycle over again. 

THis time I tested positive for something called Parainfluenza Type 3. They say this is yet another version of a "common cold" but I read that in people with compromised immune systems, it can cause pneumonia and other deadly infections. So now I am totally paranoid and terrified about this. 

June 28 Appointment with Dr. Bixby - Transplant Outlook Update

Dr. Bixby confirmed at this appointment that he talked again with the UofM transplant team and they are still refusing to consider me a candidate. He said that he is reaching out to a colleague of his at Henry Ford, the last of 3 transplant centers in our area (UofM, Karmanos, Henry Ford) to see if they will consider me. If not, he will begin the process to refer me out to MD Anderson in Texas, which is where he feels they will be the most liberal and adventurous with taking on a tough transplant case. 

I thanked Dr Bixby for taking such an interest and really advocating for me to get a transplant. He told me it's his job to advocate for his patients and that my life is worth it. Such a kind and compassionate doctor and once again a total 180 from what we have experienced elsewhere. 

Transplant Hesitations

But I do still have some mixed feelings about this. I know MD Anderson is good, but I'm not sure pressuring organization after organization into giving me a transplant is a route I want to go on. Transplant is a really big deal. Like really, really big. If MD Anderson approved me we would have to move to Texas for 4-6 months. 

Even if I'm in remission at the time of transplant, the transplant itself could kill me. Am i selling out progression free time in remission, when I could be enjoying some quality of life, grasping at straws hoping for something more? Something that only increases my chance for not relapsing from 5% to 35%?  

Would 6 or 8 months of quality life and a relapse be preferred over a year or so of potential misery for transplant and recovery, and a potential to still have a poor outcome? I've been reading stories from people with much less high risk leukemia than what I have who went through transplant and relapsed anyway, they were never able to obtain any type of quality of life post-transplant as they had to go back on strong chemo and were constantly sick. It's a scary thing and a huge decision. 

Consolidation Round 2 - June 28 

So despite my new bout of viral respiratory issues Dr. Bixby determined I would still be able to start my 2nd round of consolidation chemo as planned. I was admitted around 5pm on June 28 and was able to go home today, July 1 around 1pm. 

The chemo was once again fairly tolerable while receiving it. I would say that overall I had a little more fatigue, nausea, and appetite loss than the first round, but nothing unmanageable. I was also having some weird chest pains during the beginning of my stay but a chest xray, EKG, and troponin test to check for heart valve fluid leaks all returned normal. 

Now that I am home I am experiencing some more nausea and finding it hard to motivate myself to eat. 

After every round of chemo I get put on a dose of preventative medications. An anti-viral, which is meant to protect against things like herpes, chicken pox, or shingles. An Anti-fungal which is to help prevent against thrush in my mouth and fungal lung infections. And an Antibiotic, which is supposed to help protect against getting bacterial infections when my counts are low. 

Obviously, the first two times (induction and consolidation phase 1) the antibiotic failed because I ended up in the ER with a neutropenic fever and E Coli infection anyway. After my last stay at UofM for the e coli infection my doctors did susceptibility testing on the virus that I had to see what types of antibiotic will be more effective against it, and I will be taking that one now. So, fingers crossed that I am not on my way back to feverville next week. 

Back to work 

I made a tough decision to attempt to return to work on a 25% schedule. My official first day back was June 29, and I will be resuming a full 25% schedule on July 9, after the holiday break. This return to work will (hopefully) help to alleviate some of our current financial pressures as well as help avoid adding more pressures both financial and bureaucratic. 

Essentially to remain on full long term disability without returning to work I would have to jump through a series of hoops. Turning in my laptop, converting my cell phone over to a personal plan (and adding the cost of my phone bill to our already stretched budget), apply for social security disability, and when approved my LTD benefits would be reduced by the amount of SSDI that I receive. The SSDI would be taxable, where as the LTD isn't, so the taxes owed on the SSDI would be yet another hit to our already reduced income. 

So, I've decided to attempt this return on reduced schedule and see if I can keep from crashing and burning. I can probably manage to fit in 50 hours of work per month between 3x per week blood draws and infusions, hospitalizations for chemo and infection, and just overall trying not to feel like crap, right? Luckily I can do all of my work remotely, so hopefully I can manage. 

I think that pretty much brings everything up to date. I will leave with one final, semi-long quote that was posted in a facebook group I am part of. It was a humorous approach to what its like to go through cancer treatment and I really got a laugh out of it. 

Mountain Lion Analogy

"What's it like to go through cancer treatment? It's something like this: one day, you're minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE'S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they're cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - "GET LOST, MOUNTAIN LION, NO ONE LIKES YOU" - and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there's someone in the crowd who's yelling "that's not really a mountain lion, it's a puma" and another person yelling "I read that mountain lions are allergic to kale, have you tried rubbing kale on it?"

As you're running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they're half grown and only have three legs or whatever, and you think to yourself - why couldn't I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, spouse  - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming "GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE," and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he's bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying "can I get some help, I've been punched in the face by two apex predators and I think my nose is broken," and all you can say is "I'M KIND OF BUSY IN CASE YOU HADN'T NOTICED I'M FIGHTING A MOUNTAIN LION."

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead. 

Maybe. You're not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say "that was amazing! You're so brave, we're so proud of you! You didn't die! That must be a huge relief!" 

Meanwhile, you blew out both your knees, you're having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says "boy, you must be excited to walk down the mountain!" And all you can think as you stagger to your feet is "fuck this mountain, I never wanted to climb it in the first place."