November 4, 2018 - Failed Re-Induction and a trip to MD Anderson

*Backdated Post*

*Some content copied from Facebook Posts*

So after we found out about the relapse I was admitted back to UofM for the re-induction chemo. I was bummed not only about the relapse but the fact that October is one of my favorite months and I was going to be spending substantially all of it in the hospital. My sister helped out by staying with me for part of my hospital stay and decorating my room for Halloween. We also really upgraded my hospital room by  bringing an air mattress and a folding table to make life easier on my sister and Alan when they were staying with me.

Overall the chemo I got for re-indiction was really, really hard on me. I had really bad mouth sores, nausea, and could hardly eat. On the plus side I had several visists from the Art Therapist and a few from Music Therapy. With Art Therapy I was doing things like making jewelry and water color paintings. It helped to pass the time. My mom also live streamed almost the entire Elton John concert to me when they went because i couldnt get out on a day pass to go with them. During my time in the hospital we also relocated Oscar and Malcolm to my friend Krystal's house where she will be able to care for them while we are spending so much time away from home.

Eventually we found out that the chemo didnt work and prior to accepting Dr. Bixbys plan to move forward we wanted to consult with MD Anderson to see if they had anything else to offer us. Here are some posts from Facebook about the re-induction stay at UofM and the trip to Houston.

Oct 18:

Today I had my Day 14 Bone Marrow Biopsy.

That means it's been 14 days since the first day of my re-induction chemo. 14 nights in the hospital. The day that should be my absolute 0. That means my White Blood Count (WBC) should be 0, my bone marrow should be empty.

Unfortunately, my white blood count has not made it to 0. It has been holding steady at 0.2 for days now, and just doesn't seem to want to 0 out. Because it's below 0.5, they can't tell what types of WBC they are (good ones vs leukemia) but my instant fear at this news is of course that the .2 left over could be leukemia.

The biopsy taken today is the only way to get a PRELIMINARY guess on the question of whether the 0.2 is leukemia or not. Our hopeful outcome is that the marrow taken in the biopsy today is empty (no good cells, no leukemia), which can be a good predictor, but not guarantee, that this round of chemo put me back into remission.

If we get these desired results, then there would be a follow up biopsy once the cells grow back, probably around 2 more weeks from now, to confirm that they grew back without leukemia.

If we don't get these desired results it will be back to the drawing board as far as how to get into a state of remission and be cleared for trasplant. This plan will surely include more chemo, and may include another trip to MD Anderson to consult with the leukemia team there (I've only previously consulted with transplant) to see what their plan would be to get me into remission.

We probably won't know the results of today's biopsy until Tuesday or Wednesday next week, so it will be an anxiety filled week for me.

To top things off, my fever spiked with a blood infection yesterday and I'm now on IV antibiotics. I was flirting with temps in the high 99s for days before it finally hit. My blood cultures are starting to grow something but they dont know what yet. My fever is currently controlled without needing tylenol, so I believe they got me on the right antibiotics first try. The antibiotics are doing a number on my GI tract.

Oct 23:

There are so many of you that I wish I could share this news with personally, but after calling my mom, sister, and Phil I am just too emotionally drained to even send a text. So I’m sorry that you have to hear this news on Facebook, but it is the most wide-spread effective way that I know to tell everyone.

The news keeps turning from bad to worse. I can no longer put on a positive face and pretend like everything is going to be ok, it’s all going to work out. Today I was forced to face the sharp reality that I may not make it to 35. Or Christmas. Or even Thanksgiving.

The final results of the biopsy that was supposed to be “empty” showed that there is still leukemia in the marrow, and my daily blood labs show that it is also in my blood. Because the leukemia is still present, this means that my immune system will not return to normal after this round of chemo and I will remain neutropenic and extremely susceptible to infections and continue to need transfusions of blood and platelets.

Without treatment, or if the next subsequent treatment does not work, life ending complications are expected to arise within the next 4-8 weeks. This could be caused by an infection due to no immune system, bleeding to death due to no platelets to clot my blood (through a cut/wound or internally), lack of oxygen circulating through my body due to no hemoglobin, etc.

Dr. Bixby, my oncologist at UofM came to my room today to discuss the results and potential next steps. If I decide to continue treatment here at UofM he only has one option for me. This option is a combination of two drugs, one of which is not FDA approved for AML (it is used for a different leukemia) and likely wouldn’t be approved by my insurance, and he said it would probably cost about $16,000 if that was the case.  This treatment has only been used here for 4 months, on 30 people. The response rate has been 10-20%, with some achieving remission after one round and others after two, the rest not at all. No one with my specific, aggressive type of AML has been treated with this protocol, and because of my aggressive mutation he estimates my chance of having a response to be less than what they have observed so far.

He was also in touch with the team at MD Anderson and they would like me to come meet with an oncologist there (I only met with a transplant doctor before) and my doctor said that at MD Anderson they have many more options available for clinical trials. MD Anderson would like me to come down ASAP to be evaluated, hear the treatment options, and potentially start treatment. I am waiting to hear back on an appointment time but we currently have a flight booked for 630am on Friday to go to Houston. It’s a one way flight. I don’t know when we will be back.

I thank everyone for their love and support over these past 2 and a half years of cancer hell. I really can’t express how much it means to me. During these next few days we are going to be very busy figuring out the logistics of how to get me safely to Houston, whether we are going to be staying there long term, where we are going to stay, and how we are going to afford all of it.

I am unable to accept visitors other than our immediate family before we leave and ask for no phone calls at this time please.

Oct 27:

We are amazed and humbled by the generosity of our friends and family and perfect strangers this week. We love and appreciate you all so much I can't even put it adequately into words.

Here is how things have been going so far:

- In order to get here we had to stay awake for almost 36 hours straight. From the time we got up Thursday morning until the time we finally got to our hotel after all of my appointments Friday.

- it was a stressful 36 hours because we had to pack up 3 weeks worth of hospital room living (barely fit everything back in our car), finally got discharged and made it home by 6pm, had to unload the car, unpack, do laundry, figure out what to pack for a trip of unknown length, repack, shower, and be ready to leave by 330am.

- I have to continue IV antibiotics for my blood infection so we had to bring on medical liquids in excess of TSA limits. The TSA agents were great about it and we actually had an excellent experience with them but it took a lot of time. And then the cooler didnt fit the overhead bin so we had to gate check it.

- By the time we got to Houston, rented a car, and got to the medical district I was already late for my blood draw so we had no time for breakfast.

- APPOINTMENT: I met with Dr. Kadia and his top recommendation for next treatment at this time is the same as UofM. So I kind of feel like we went through all this stress and put myself at risk of germs and more infection in the airport/airplane all for nothing. I expected a long list of options to choose from.

- there are 2 other trials involving Venetoclax, (that $16,000 drug that is for CML, not AML that I mentioned), but they are paired with even stronger drugs than the one being recommended and the Dr here does not feel my body is strong enough to tolerate it due to my current 2 infections and the toll they have taken on my body.

- they made me get ANOTHER biopsy and it was a disaster. The first spot they went in was dry then they had to use more (aka way over the recommended dosage) lidocaine to get a good spot and afterwards my leg went wonky and I could not walk. I barely made it into the car from my wheel chair and Alan had to hold me up when we got to the hotel. My upper body was shaking. And right now it feels like my entire left hip and buttcheek are bruised.

- Dr. Kadia wants me to spend the week here, getting labs MWF. He wants me to see my transplant dr early this week and make sure we are all on the same page and that we are still on the way to transplant if I get in remission. Then he wants to see me back friday. At that point he will decide based on the biopsy results and any improvement in my overall condition compared to today which treatment to recommend.

- if his final recommendation is still the same as UofM we will probably be coming home next Saturday. If it is the same exact treatment there really isnt any reason not to do it at home, unless MD Anderson had some other sort of salvage therapy as a next step if this doesn't work that UofM wont have. That would save us having to travel back and forth again when I will likely be in even worse shape than now if the next treatment fails.

- This week's current biggest fears weighing on my mind are:

     - getting a fever and ending up in the ER here. Not only would that mean I probably now have a THIRD infection, but it could disqualify me from getting any treatment at all.

    - getting accepted for one of the more aggressive treatments but the doctors being right about me not being able to tolerate it. If I end up with even worse infections and possibly in the ICU I'm afraid I'll never make it back to Michigan. I dont want to die in Texas.

Nov 4:

Update: We spent the week in Houston waiting on biopsy results and meeting with various doctors, including seeing my transplant doctor again to make sure everything is on track for when I get back into remission.

Yesterday we met again with the Leukemia doctor at MD Anderson to get the biopsy results and hear his final recommendation. My marrow is at 53% blast cells (that means more than half leukemia) and the same mutation was still there, nothing new. They discussed my case last week at their interdiciplinary council meeting and everyone agreed that the best course of treatment at this time was Decitibine+Venetoclax, which is what my doctor at UofM had already recommended.

We are disappointed that MD Anderson didnt have anything new and exciting to offer, but this also gives an increased confidence in my oncologist at UofM and overall treatment plan. It was also good to meet with the transplant doctor again and feel like we have a good plan in place for going directly to transplant when I get into remission.

Since the treatment is not something available exclusively at MD Anderson, we made the decision to fly home yesterday and resume treatment at UofM this week. We got back around midnight so I get one glorious day at home today, then I will get re-admitted to UofM tomorrow (Monday).

October 5, 2018 - Relapse

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*Some content copied from Facebook Posts*

So after my last visit with Dr. Bixby just before Labor Day we decided to take advantage of me not being on chemo that month. I wasnt due to get a blood draw for a month so basically we had the entire month of September to pretend that life was normal.

We went to Arts, Beats, Eats over Labor Day weekend and saw Everclear perform. I was able to go to the Ed Sheeran concert that I had bought tickets to back in February. We took a trip to Las Vegas and did lots of touristy things like going to the Mob Museum, the Neon Museum, and going to the top of the Eifel Tower at Paris Hotel. Plus a lot of our standard Vegas things like days at the pool, eating at amazing buffets and other favorite restaurants, the high roller, the Bellagio gardens and fountain, etc. After the trip we spent a day at my family reunion and I got to go to a cider mill with my best friend Kelley and her family while our husbands spent the day at the renaissance festival.

By the end of September I was feeling pretty run down. I was getting some petichia rash which is usually caused by low platelets and I was getting really scared that I was relapsing already.

It turned out that my fears were warranted and my blood draw on Oct 2 showed a relapse. Ironically MD Anderson called me on Oct 3 to say they were ready to move forward with a transplant using my brother Michael as a 50% match donor. Unfortunately because of the relapse that was no longer going to be an option until I could get back into a state of remission.

Here is what I had to say about the relapse and plan of action on Facebook:

Oct 4:

This isn't the story I wanted to tell.

Tuesday I had my monthly blood draw.

When the phone rang only an hour later, I already knew what was coming. "Unfortunately the results showed that there are recurrent blasts in the blood"

Blasts = Leukemia

Today I met with Dr. Bixby at UofM. The plan is to try re-induction (to induce remission), but with different drugs this time. The first time I received something referred to as 7+3, a combination of Cytarabine and Danurubicen. Then for consolidation I had received high dose cytarabine.

The plan for this time is something called MEC, but without the C (which is cytarabine, which he thinks I've become resistant to) so it will be Mitoxantrone and Etoposide.

But wait. Isn't Etoposide what caused my AML in the first place? Yeah. Really weird and scary thing to think about. But I guess now that I have the mutation that causes AML I can't get it again, and it can't make it worse, and it can actually be really effective at killing the leukemia cells.

So today I will be admitted to the hospital. I'll get an ultrasound of my heart to make sure it can withstand the chemo, and my doctor will call MD Anderson to confirm that if this puts me back in remission, they will still be willing to do a transplant.

Then in the morning I will start a 6-day plan. 60 minutes of one drug and 30 minutes of the other, every day for 6 days. I'll also be getting preventative antibiotics, and when chemo is over I'll be staying in the hospital until my counts rise in case of infection, so that IV antibiotics can start immediately.

This means I'll be spending about 3-4 weeks in the hospital.

If this regiment is successful in achieving remission again, the plan will be to hopefully get to MD Anderson ASAP for a transplant.

August 31, 2018 - cancelling consolidation rd 4, taking a mental time out

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*Some content copied from Facebook Posts*

After recovering from my eye infection we spent a couple weeks enjoying life. We had a trip to Henry Ford Museum and I went with some friends to see Taylor Swift. I was scheduled to go back into the hospital for my 4th round of chemo over labor day weekend, but it got cancelled. Here is what I posted on Facebook at that time:

Aug 31:

Warning: very real and mostly depressing post ahead.

Today I saw my oncologist.

He is cancelling my 4th and final round of consolidation chemotherapy due to this most recent infection. Apparently the infection in my eye was much more severe and dangerous than I knew at the time, and they are afraid that another round of chemotherapy will result in a life-ending infection.

Now I am at a cross roads.

I can do nothing, which leaves me with a 95% chance of the leukemia coming back, and most likely coming back soon (within months).

After that point there is not much they would be able to do for me, especially because of my susceptibility to infections, which would make them unlikely to give me chemo again in the future.

I can do a transplant, which MD Anderson in Texas has agreed to do. But there's a matter of figuring out a suitable donor. And we would need to move to Texas for about 4 months. And the transplant itself has a lot of risks, including life threatening infection, graft vs host disease, and risk of my neuroendocrine tumors growing. And there is still a 70% chance that the leukemia comes back after the transplant, with no guarantee that the chance of recurrence is any further in the future than chemo only (i.e. could do it and still relapse in 6 months)

It's a big decision, and I really don't know what do. Either way i choose, the outlook isnt great. My infectious disease specialist told me today that I should probably go on a vacation.

August 22, 2018 - Eye Infection, Sinus Surgery, Pseudomonis

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*Some content copied from Facebook Posts*

On the night of August 10th I fell asleep on the couch and when I woke up the right side of my face was a little sore. I chalked it up to sleeping funny and went up to bed. Then I woke up around 7am and my eye was red and swollen and my whole half of my face hurt. I knew I was neutropenic so I had to go to the ER. Alan had stayed up late and had barely gotten to sleep so I made the call to just drive myself to the ER at Beaumont. This ended up being a huge mistake as Beaumont turned out to be wildly I'll equipped to handle my issues.

I spiked a fever while in the ER so they started antibiotics and admitted me. I expressed my desire to be transferred to UofM as soon as possible. Which turned out to be almost 5 days later because UofM was at full capacity. Below are some Facebook updates that I posted during the whole ordeal.

Aug 13:

UPDATE on Meghan from Alan:

After two and a half days on the strongest IV antibiotics possible, Meghan's eye continues to show no improvement and the swelling has spread down her face and neck.  Today, they called in a surgeon from Ear, Nose, and Throat who came into the hospital from home to see Meghan as an emergency consultation.  They think there is a chance she might have acute invasive fungal sinusitis.  He thinks it is a low chance (10 to 15 percent), but if she does have it, it is a very aggressive disease that can result in death quickly.  They are going to surgery to perform an operation to open her maxillary sinus to check for the fungal infection.  The doctor says the surgery is relatively low risk but for Meghan it is higher risk because of her low blood counts (low platelets, low white blood cells).  The doctor thinks this is an emergency situation and wants to operate tonight as it could spread more by tomorrow morning.  She thanks everyone for their thoughts and comments.  I have been reading her the posts.

Aug 16:

UPDATE from Alan: After 5 days waiting to be transferred to Michigan, it finally happened at 1:00AM this morning.  She met with oncology, hematology, opthamology, infectious disease, and ENT doctors as soon as she arrived here.  They ran another CT scan on her head and found an abcess behind her right eye.  She is about to go in for a second surgery to have the abcess drained and they are also going back into the sinuses for more scraping and clearing.

Aug 17:

After 5 long days at Beaumont, yesterday I arrived at UofM around 2am with:

- 2 painful and inconveniently placed IV lines for the purpose of running 3 different antibiotocs

- a face/eye that was increasing in size and redness every day with a lot of heat radiating from it

- still spiking temperatures over 100 At least once a day

Within less than 10 hours from then I was seen or examined by doctors from 4 different services (hematology, ENT, Opthamology, Infectious disease), given a repeat CT, and scheduled for surgery. Another 24 hours and I now have:

- my port accessed with no peripheral IV lines

- Down to only one IV antibiotic (and not even one of the 3 I was on)

- An eye abscess drained and a sinus cavity properly cleaned out

- A face/eye that is 50%+ less swollen and barely warm

- A temperature that has stayed under 99 at every check

- A plan of action leading up to and for after discharge

- taken a shower and had a full meal for the first time in a full week

I've mentioned it before but one of my biggest fears is dying from infection and complications, which is actually a common cause of death for people with cancer. I have a lot of anxiety every time I think about coming up on my time of neutropenia. Will I spike a fever? Will it be an infection? Will I develop antibiotic resistances that make future infections harder to treat?

My other big fear, medically, is of surgery, or more so general anesthesia. I am very paranoid of going in for surgery and not coming back.

So this week I had to face both of these fears multiple times. While also being fairly isolated because I couldn't even use my phone because of the IV placement. And it was hard.

Alan has been an absolute champ, sleeping (if you could call it that) in the most uncomfortable of spots and staying up close to 24 hours more than once just to make sure I wasn't alone. Packing us supplies and treats, making me eat and drink when I don't want to, double cleaning everything because he doesn't trust the hospital.

I really can't thank everyone enough for the comments you've left on the updates Alan posted for me while I couldn't bend my arms. From the bottom of my heart, really and truly.  They really helped to ease my anxiety and fears and bring me some joy during this very difficult week. I love you all! 💓💓💓

More updates to come, and I'm sure I'll eventually combine all of this into one extremely long blog post.

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." 

June 7, 2018 - Fever Dreams...

What a day it was Monday (June 4).

Bad night of sleep, left the house at 6am, spent from 7am-2pm getting bloodwork and transfusions at UofM. Barely ate while I was there. When you receive transfusions they monitor your vitals (temp, blood pressure, heart rate) about every 15-20 minutes while you are receiving the blood. They also monitor you for 30 minutes after the transfusion is over. I made it the entire day sitting there, receiving blood, with perfect temp the entire time, only to arrive home at 3pm and start running a fever pretty immediately. 

I had been feeling "cold" on the car ride home, but my sister agreed it was also cold so I didn't think much of it. When I got home our house temp was 76 degrees and I was still feeling cold, but I wasn't having chills or anything like that. I immediately changed into long sleeves and bundled under a blanket. I would have guessed the room temp was about 55, not 76. I took my temp right when I got home and it was 99.6 even though it had been 97.9 only an hour before. 

I also come home to find that Alan's "sore throat" that we thought was just a typical side effect for him of having slept in a hotel (his family attended a wedding in Toronto over the weekend) has now pretty much progressed into a full on head cold / sinus infection. This means I can't be anywhere near him now until he is cleared. Which means if my temperature were to spike, he can't go to the hospital with me. I put out the message on Facebook hoping that I wouldn't need to act on it. Thanks for everyone who responded that they could be available if needed!

My thermometer is kind of wonky so I wanted to get multiple reads that were either consistent or rising, both because I wanted to avoid anyone having go take me in rush hour and I didn't want to get to the ER only to find my temp is normal. So even though at 430pm I hit the 100.5 threshold, I decided to just rest, hydrate, and wait til 6 or 630 and double check again. I figured a 2 hour drive at rush hour vs waiting 1.5 hours then having only an hour drive would only put me a half hour behind on receiving treatment if the fever stuck. 

At just before 6pm I took my temp again and it was 103.7 - and I went into panic mode. I don't think I've ever had a fever that high even under normal circumstances. I called my wonderful friend, Rachel, who had said she could be on call for driving if I got a fever while Alan was sick, threw a miniature go bag together, and we were on the road within 15 mins.

We arrived around 7pm; I had called my doctor's after hours number and let the on-call doctor know I was coming, so they already had me down on a list at the ER. Due to this, combined with my symptoms and that on initial triage my HR was 160 and my temp was 102.7, I was taken immediately back to some sort of critical ICU place in the ER because of my low counts, high hr, and high temp. I arrive at a room with at least 8 doctors and nurses in it. By 8pm I had been triaged, hooked to IV, heart monitors put in place, and an EKG and chest xray done. 

Although i know my dire situation caused them to move so quickly, I feel so grateful that it did because while waiting to be let back to my room Rachel said people were talking about 3+ hour waits. I would guess there were 25+ people in the ER waiting room. 

Initially they didn't have the necessary 1" needle for my port so they had to order it from another area of the hospital, which could take a while. They really wanted to get me on fluids asap because of my heart rate, so they asked if they could start a peripheral line. I explained my bad vein history, showed off some of my 1 month old failed IV bruises, and they suggested to bring in an ultrasound tech to look for a vein. It turns out that I actually have a pretty big vein in the crook of my right arm, but she said it is so deep there's no way they would ever see it on the surface or even with the little infrared tool. At least now i have this info for future reference.

So once all that was hooked up they put me on fluids and were drawing blood cultures to check for infection. I also needed to provide urine sample. Once all the samples were taken they decided to put me on antibiotics because they were pretty sure it was an infection, not a reaction to the blood I had received earlier in the day.

Shortly after 10pm I got moved to a new room, still in the ER, called the emergency critical care unit. It's a private room with real walls and a tv, but it also doesn't have it's own bathroom. Since I can't really use public toilets they brought me one of those things where it's like a bench with a hole in the middle that they put a bucket in. I was told that I would probably be in this room for quite some time (well into Tuesday) because the hospital was entirely full and there were something like 48 (or 98, I can't remember) people waiting for rooms. When I got to this room I had finished one round of antibiotics, my temp was 97.8 and heart rate down to 117. I thought things were looking up. Boy was I wrong.  

Within 30 minutes i was complaining of being cold in the new room and about 10 minutes later was in full body shiver mode. My legs, arms, everything was shaking vigorously, teeth chattering painfully, and i couldn't control it. My heart rate back up in 160s and all I wanted was to feel warm. I would have paid $1M for a warm blanket in that moment, but the doctor said you should never heat a fever. The shivers are the body's way of regulating the temperature, and even though you feel cold your body is actually very hot. 

The last round of chemo when I spiked a fever, I had gone through this one round of chills and once my fever broke my temperature never went up again. So when my fever finally broke just after midnight I thought once again that I was out of the woods. Once again, I was wrong. 

I would have to say that the 4am hour of Tuesday, June 5 was probably the absolute worst of my entire life to date. I cannot remember ever feeling so desperate and helpless, with a complete loss of all dignity. 

Just  before 4am I started to feel cold again, and within 10 minutes the chills/convulsions started. To make matters worse, by this time the antibiotics had started to wreak havoc on my intestines, I had a severe cough which was causing some issues with control of bodily functions, and as my temperature rose so did my heart rate. This time around my heart rate was spiking in the high 190s. Everyone kept freaking out about this and I was terrified that my heart was going to explode or something. How high can your heart rate go and for how long before that happens? 

I was also scared about the fact that I was having a second round of this severe fever, because I have a lot of paranoia about developing antibiotic resistances, since I already had two strains that had some resistance last time, and I still have so many rounds of chemo with potential infection to deal with. What if I become resistant to all antibiotics? How will they treat me? Will I just die from infection? How could these resistances affect any sliver of chance I have left of getting a bone marrow transplant?  

The icing on top of my anxiety cake was the fact that Alan couldn't be there with me. For normal hospital stays where nothing traumatic is happening I don't mind being there alone. In fact, I sometimes prefer it because the doctors and nurses will normally get more chatty with you if you're alone and you get to know them better. Plus it gives me a lot of time to think and reflect on things. But I had never been alone during something severe and traumatic like that, and I was worried about wanting to update Alan on what was happening or who would call him if something went wrong. 

As my fever started to break my heart rate was still not coming down, which the nurse thought was because I was so anxious. She asked the doctors to order me some ativan and I don't remember much of anything that happened for the next couple hours after that. I suppose I probably fell asleep for part of the time. I was still groggy when I woke up, but managed to order some breakfast. I ordered a really elaborate meal but only managed to eat half a piece of french toast before immediately needing the bathroom so I was too afraid to eat anything else. 

My heart rate was still high on tuesday (140s) and my temperature still wasn't controlled. I also had an intense pressure in my head that mostly felt like it was in a vice grip. They continued to give me fluids, potassium, magnesium, and even had to get another bag of platelets because they had already dropped below transfusion level again. 

Eventually in the afternoon I found out that they had figured out where I would be admitted: to the regular cancer center in the University Hospital instead of the Leukemia/BMT area in the Mott Children's Hospital. At first I was a little disappointed about this, but then I found out that my doctor, Dr. Bixby, was going to be the rounding doctor for at least the rest of this week so I actually preferred that over being placed on the other unit. 

While I was still waiting on a bed to open up on that unit both the resident and the medical student that was going to be part of my team during my stay came to talk to me. They both seemed really nice and knowledgeable and I had a really great connection with the med student, Elizabeth, in particular which was nice to feel like I kind of had a "friend" there for me after feeling so lonely during that 4am hour from hell. 

Eventually they came to take me up to Unit 8A of the University Hospital to my room. This room is much smaller than previous rooms I've been in, and no personal fridge, so it kind of works out that Alan wasn't able to come with me because there is only a really uncomfortable looking chair for him to sleep in, they don't have cots or anything like that. I do have a really nice view though, and I saw a beautiful sunrise from my window on Wednesday morning. 

About 12-18 hours after making it up to my new room my fever eventually stabilized and I haven't had a fever at all today (Thursday). They also found out that my blood cultures (in both my port and from my IV) came back positive for e coli. I had e coli last time too. Luckily no VRE this time. My doctor said that the reason that I am getting these infections is most likely because the very strong chemo that I am on thins the wall of the intestines that normally protects from gut bacteria getting into the bloodstream, and when they are thinned out then the bacteria that is naturally already there can sneak through into the blood. So for all my million precautions, avoiding my cats, avoiding going out in public, sanitizing everything, etc. basically none of it could have prevented this. 

I have since had two more sets of blood cultures drawn, and they both haven't shown any bacteria yet. This is an indicator that the IV antibiotics I'm on have taken care of the infection, which is good. In order for me to be considered "clear" the final sample drawn this morning has to go two days with no growths and I have to maintain my fever-free state. Other requirements to go home are neutrophils over 500 (as of Thursday they were 300) and they need to figure out what type of antibiotics to send me home on, because clearly both the Cipro that Karmanos sent me home with after the induction chemo and the levofloxacin that UofM sent me home with this time were ineffective at preventing the e coli. They are thinking that it might need to be an IV antibiotic situation since two oral forms have already failed. 

Aside from the infection, a couple other problems have popped up since I've been here. One is some pain on my left side. I would almost describe it as a floating pain. Sometimes it's in my rib cage, other times it feels like its in my abdomen, sometimes lower like in my hip bone area. The doctors think that it is musculoskeletal caused by pulling/straining something either because of coughing so hard for so long or from my shaking during my fever chills. I feel like the pain is more internal than that though and they decided to do a CT scan today. I went at 430 pm and I expect I won't get the results until Friday unless something had been emergently wrong. The main thing that I'm paranoid about is an infection or other issue with my appendix. I don't know why I am specifically paranoid about that, but I am even further paranoid about needing some sort of emergency surgery when I have no platelets and no immune system. Just sounds like a recipe for disaster. 

The other thing that is going on were some bumps that I noticed in my pelvic area. I was rolling over while trying to sleep and felt a twinging pain and I felt a couple of bumps. I called for my nurse, who brought in the on-call night doctor and he thought it was ingrown hairs. I told my main medical team about it in the morning and Dr. Bixby said it looks more like a goose-egg type bruise (think like when you bang your shin on a table leg), which could have been caused by cleaning the area too vigorously. We will continue to monitor those as well, but he didn't think they were inflammation or a cyst or infection or anything. 

That's pretty much all for now, more updates once I'm finally home! 

Special thanks to: 

my sister Lauren for staying with me all weekend while Alan was in Toronto (and helping organize my clothes!), and staying with me during my transfusions on Monday

my mom and Phil for driving over 200 miles (and 4 hours of travel time) to drive from their house to pick me up, drop me off in ann arbor, then go back home, pick me up after my transfusions, and drive me home so that we could ensure Alan could go to his own important doctor's appointment that day

Rachel for getting me here and staying with me a few hours in the ER

Christen and Dave for visiting and bringing me lunch (on their wedding anniversary no less!),

my mother and father in law for visiting and bringing my computer which I had forgotten at home

Kelley for visiting today and bringing me lunch

And last but not least to Alan for holding down the fort at home while I'm in the hospital; taking care of the cats, doing the major spring clean up of our yard, and cleaning up the house all while he's been battling a pretty nasty sinus infection himself. Hopefully he's better before I come home so that we can actually be together. 

Much love to you all!!

June 1, 2018 - 3 of 3 What does remission really mean?

As anyone who follows my posts on facebook already knows, the results of my May 16 biopsy showed no evidence of leukemia, this means that my disease is currently considered to be in remission.

What does this really mean???

A lot of people have been asking me what does this mean, so I want to put this at the beginning of the blog, ahead of all the details, instead of at the end. 

For starters I will accept and acknowledge that is great news because this was not the statistically likely outcome. I feel very fortunate to have received these results. BUT it does not mean that I am cured, and am far from out of the woods as far as this disease goes.

When the bone marrow sample is taken and looked at by pathologists, they look at a sample of 500 cells under a microscope and they count how many of each type of cell is seen in there (hemoglobin, platelets, etc.) So what the results tell us is that for the 500 cells that the pathologist looked at, there was no evidence of leukemia. But Dr. Bixby informed us that the marrow is made up of over 1 TRILLION cells, so this is not really a statistically significant sample but it is pretty much as good as you can get as far as getting an idea of what's going on.

So because of this, remission after the induction phase is always followed up with a consolidation phase; the body can handle about 4 rounds of the consolidation treatment, and they are spaced about 4-5 weeks apart. According to Dr. Bixby transplant is still the ultimate goal, even though Dr. Riwes and her team have said that they will not consider me a candidate. Dr. Bixby is still fighting for me though.

MLL Rearrangement

Dr. Bixby explained to us again at this appointment about the additional mutation that is within my specific type of leukemia. My cells had something that is called an MLL rearrangement, which means basically that during cell replication the 11th and 19th chromosome somehow got spliced and swapped their bottom halves, which is what makes my specific disease more aggressive and less treatable than some other types of AML.

Consolidation Chemo

We were explained that over 30 years ago researchers found that remission achieved during the consolidation phase of chemo is never sustainable, so with any type of AML a consolidation phase is begun, which I kind of think of as maintenance chemo.

For the MLL rearranged leukemia the most effective treatment during consolidation is a really high dose of cytarabine, which is one of the two drugs that I received during induction. The induction phase was 3 days of a drug called daunorubicin, which was injected for 20-30 minutes on each of the 3 days, and a 7 day continuous flow of cytarabine. My consolidation chemo will be a very high dosage of just the cytarabine given as 6 infusions spaced 12 hours apart. Each infusion lasted for about 3 hours.

Because of the extra high dose of the cytarabine I had to have additional precautions in place to protect against or determine certain side effects. I was put on steroids (hate them!) to help reduce nausea. I had to get drops in my eyes every 6 hours, and I had to do a coordination test an hour before each of the 6 bags of chemo. The coordination tests were things like a nurse had to witness me walking around the room or to the bathroom to tell that I could maintain balance, I had to sign my name to a piece of paper to monitor the consistency of my hand writing, and I had to touch my nose then the nurses finger back and forth as they moved their finger around.

Hospital Stay 

My time in the hospital was pretty uneventful. Either because I was on the steroids or because of only being on the cytarabine and not the daunorubicin, I didn't really get very much nausea or feel sick and tired like I did the entire week I was on induction. It also helped that the UofM hospital food was much better than the DMC. They had a robust menu and you got to pick and call in when you wanted your food to arrive, rather than a plate of breakfast arriving at 7am every day even if you weren't going to  be ready to eat until 10. 

The nurses and doctors there were all friendly, but we didn't get to know them too well since we only had to stay for 3 nights vs all the time that we had spent at Karmanos.

Discharge 

Once my final bag of chemo was done early Monday afternoon we were free to leave the hospital. I had to go to the clinic in Northville on Tuesday to get something called a Neulasta shot. This helps stimulate the production of white blood cells, and specifically neutrophils so that your levels recover more quickly. I also have to have my blood levels checked 3x per week to see if I need any transfusions.

Originally they had said that I could arrange to have my blood work and transfusions done at a more local clinic (since Ann Arbor is an hour away), but this is proving to be very difficult to coordinate. Dr. Yang from Karmanos has refused to keep me on as a patient in this capacity and there is some doubt over whether it can be properly coordinated through Dr. Philip (my oncologist for my neuroendocrine tumor) so the plan right now is to just make the long drive 3x per week. It really sucks because those are several extra hours of driving and probably hundreds of dollars of gas that we now have to take on. But all of this just solidifies the decision to go to UofM as being the right choice.

The expectation is that my levels will drop drastically about 7-10 days after the start of chemo, remain down for another 7-10 days, and then recover over the 7-10 days after that. Just in time to come back and do it all over again. Based on the fact that I started chemo on a Friday and my Neutrophils were already down to 700 (from 7100 on Monday) by Thursday, I am guessing I am going to be closer to the 7 day mark on that first part. Now I just need to be quarantined on fever watch for the next 7-10 days and hopefully my counts will start to pick up again. If I get a fever all all (100.5 or higher) then I need to go to the emergency room and I will be admitted until my neutrophils are more than 500 and any infection is cleared up.

Statistics 

We asked Dr. Bixby about the potential outcomes with and without transplant and also asked him to address some of the concerns we had about the transplant process based on our conversation with Dr. Riwes.

Dr. Bixby said that without transplant the average time for someone with MLL Rearranged AML to remain in remission is approximately one year. Some are much less and some are more, but the average is one year. There is less than 5% chance of there not being a recurrence without transplant.

With all the risk factors of transplant, Dr. Bixby said that the survival rate would be around 30%. So, still not great but better than 5%, which is why he is still advocating for the transplant for me.

Future Treatment

Now that I completed the first round of consolidation, there are 3 more to go. My next hospital check in is June 28. The next one after that will probably be early August and then early to mid september. There is some leeway in the dates of when I will receive it, so they said I can try to coordinate around my counts being good for certain events I already had planned, like a handful of concerts.

That's all the updates for now. Thanks to everyone for all of your love, support, prayers, positive thoughts, amazon shipments, and donations.