December 23rd, 2019 - My Sweet

Hello.  This is Alan, Meghan's husband.  I have sad news.  On Saturday, December 21st, at about the time of the winter solstice, Meghan passed due to complications from her AML.  Meghan wrote her obituary a few months back in anticipation of this awful event.  Meghan wanted me to share her writing with you.  I love you my Sweet.

Meghan Kelly Carter passed away on December 21st, 2019 at age 35 in Ann Arbor, Michigan due to complications of the Neuroendocrine Carcinoma and Acute Myeloid Leukemia cancers that she lived with for more than 3 years. 

 

Meghan was born on January 5th, 1984 to parents Susan Marie Moore and Phillip Reed Mathes. 

 

She attended Harry S. Truman High School in Taylor, Michigan, where she was part of the marching band color guard, and student council; during that time she made many friends that she considered to be like family, whether they lived a few cities away, or across the country.

 

Meghan later went on to complete both a Bachelor of Science in Mathematics and a Bachelor of Business Administration in Accounting from The University of Michigan - Dearborn. Throughout college she was a proud and active member of her Sorority, Phi Sigma Sigma. It was through Phi Sig that Meghan made countless lifelong friends, while enjoying both social and philanthropic activities. She remained active within the organization after graduation through volunteering and participating in alumnae events, and she was close with many of her sisters throughout her 20’s and 30’s, especially the "brunch and stuff" ladies. 

 

After graduation, Meghan spent several years working in commercial financing before landing her dream career in a public accounting firm. Working in data analytics and solving client problems was something she felt very passionate about.  Although she had to take a great deal of time off work towards the end of her life, Meghan was always fond of her coworkers and looked forward to someday rejoining the office. 

 

In 2013, Meghan felt fortunate to meet her true soul mate, her Sweet, Alan Carter; she only ever wished they had met sooner in life. With Meghan's Neuroendocrine Carcinoma diagnosis coming only 7 weeks before their wedding, the majority of Alan's time as husband included the title of caregiver as well. The couple used their unique situation as an opportunity to strengthen their relationship.

 

Meghan passionately enjoyed music, traveling, and cats in no particular order. She was deeply saddened to have to rehome her two cats — Oscar and Malcolm — due to complications of her leukemia, but was so grateful to have found such a loving home for them. 

 

She continued to travel until it became medically prohibited, but attended concerts and comedy shows locally well after that point. In 2017 she was able to travel to and attend seven Dashboard Confessional concerts, even meeting lead singer Chris Carrabba on several occasions; in total she was able to see her favorite musician play live more than 20 times over the course of her life.

 

Meghan is survived by her husband Alan Carter, her mother Susan Moore (née Standafer), her father Phillip Mathes, her siblings: Kathryn (Gordon III) Tower, Lauren Moore, Curtis (Kim) Mathes, Phillip Jr. "Butch" Mathes, and Michael Mathes, as well as her in-laws: Julian, Antoinette, Kristin, and Neil Carter.

 

She is also survived by her nieces and nephews: Adrian, Gordon IV, Harrison, Jason, Tristan, Peyton, Christopher, Nicholas, and Nevaeh, her cats Oscar and Malcolm, and many aunts, uncles, cousins, and friends that she loved dearly.

 

She is predeceased by her grandparents Marion "Al" Standafer, Evelyn "Darlene" Lapansie, James Marvin, Elsa Lee, and her brother Thomas Mathes. 

 

In life, Meghan never cared much for receiving flowers, and she has requested that in lieu of floral arrangements for her service, donations be made either to her estate to assist with funeral costs, or to one of the following amazing organizations that helped her throughout her treatment including: The Leukemia and Lymphoma Society, The Children's Leukemia Foundation of Michigan, Healing Net Foundation, or The Net Research Foundation.  Links to the charities below.

 

The visitation is on Friday, December 27th from 2:00PM to 8:00PM with a Sharing of Memories at 7:00PM.  The visitation will be held at Wm. Sullivan and Son Funeral Home located at 705 W. 11 Mile Rd. in Royal Oak, Michigan.

 

The funeral service will be on the following Saturday, December 28th at 11:00AM at Wm. Sullivan and Son Funeral Home and will proceed to Oakview Cemetery.

 

Charities:

Leukemia and Lymphoma Society – Michigan Chapter

https://www.lls.org/mi

 

Children’s Leukemia Society of Michigan

https://leukemiamichigan.org/

 

The Healing NET Foundation

https://www.thehealingnet.org/

 

Neuroendocrine Tumor Research Foundation

https://netrf.org/

 

Donations to cover funeral costs:

paypal.me/MegCarter

 

 

December 14, 2019 - Random updates

As most of you reading this already know, I have been back in the hospital since last Sunday (12/8). I use a bedside commode at home because I can't physically lift myself from the toilet since we don't have grab bars and I don't want to break the window sil or anything. 

Anyway I use the commode and then it falls on Alan to empty and clean it for me. Not something you expect to have to do in your 30s. So Sunday morning he goes to empty it from the previous night and he said my urine was just solid blood. I had to go again soon after he emptied it and it was the same deal. As if someone took one of the bags of red blood cells I get transfused and just poured it in the commode. At that point Alan thought if we didn't go to the ER and just waited to tell the nurses at my appointment Monday that I would have already bleed to death if I kept up that rate of blood loss. 

We get to the ER at UofM (no going to Beaumont and waiting to be transferred) and they immediately skip me ahead of everyone waiting and rush me to a trauma bay in the ER. This level of trauma buys you like 2 doctors and 3 nurses immediately rushing to your room to check you out. I was ushered into a hospital gown, had all my vitals rechecked, a telemetry heart monitor hooked up, and labs drawn immediately. The doctor was quickly reviewing my extensive medical history asking me clarifying questions and asking me to fill in the blanks of what I had already told the triage nurse about urinating out pints of blood. 

Eventually they have a regular ER room open up and they move me there. I am getting transfused with platelets (which I think came in at a 2 or 3 - and remember a normal person's low range is 150 and mine is supposed to be 20-30). We wait for a room on any of the usual floors and they have various doctors come in and check on me. They eventually say they have a room ready, which was actually in kind of record time but then I find out it's not a private room and had to really throw quite a fit because I wasnt "technically" neutropenic that day but Friday i had been and who knows what the next day can bring. I can't go neutropenic and just be sitting around with a roommate with the flu or something waiting for a private room to open up. So my ER nurse worked some magic and we only had to wait about another 2 hours.

I was admitted on 8A which I have been on all 8 A,B,C many times. During all of this I started to get a mild headache. By late evening my headache was intense and we convinced them to do a new head CT. Standing up from my bed to the stretcher to go down was excruciating. Luckily we had convinced them though because they found 3 new brain bleeds. These weren't caused by any sort of trauma because I didn't have another fall or hit my head. It just proved that if my platelets continue to be as low as they have been that I will develop bleeds spontaneously, which will eventually lead to swelling in the brain as they move from being so central. These can cause headaches, seizures, strokes, and death. 

The results of the CT bought us a ticket right back to the ICU when we had barely gotten settled in our room on 8A. We got transferred to an ICU which wasn't the neuro ICU (no beds available) but where the nurses only have 2 patients at a time or sometimes you might be their only patient. This allows them the time to do things like hourly neuro checks. Every hour a nurse would come and shine a pen light in my eyes making me follow it, ask me my name, birthday, what year it is, where we are, etc. They also make you squeeze their fingers, push your legs up and down, smile, stick out your tongue, etc. Half the time I was afraid I was going to fail from sheer exhaustion. They were doing this every hour on the hour plus I had to be hooked to a heart telemetry, blood pressure cuff, and pulseox the whole time I was there. Sleep was hard to come by. 

Finally after about 36 hours they were satisfied I could move back to a regular floor but I had to wait for a bed yet again. I was luckily able to be disconnected from all the monitoring stuff while we waited. It was while I was in the ICU that the doctors were talking about the number of transfusions  that I'm needing, how it's unsustainable outpatient, and how I cant just stay in the hospital and even if I did sooner than later the transfusions will stop working even in the hospital, and my odds of making it to Christmas being slim. Eventually around 2am i got transferred back to a regular floor on Unit 8C this time. 

On my second day on 8C I asked to take a real shower. They got my picc line all wrapped up and I was able to walk to the shower from my bed. By the time the shower was over I felt like I was going to pass out. They had to get a wheel chair to take me back to my bed from the shower and even then I barely made it. When I stood from the shower to go to the chair I had another one of those episodes where my vision just went totally dark. Luckily I had a nurse and an aide there and the wheel chair was close. They wheeled me to my bed and it took about 10 mins before I could stand and get back in my bed. Alan instantly told them my magnesium was low and we found out it hadnt been being checked daily. 

Shortly after all of this I started getting rigors (the uncontrollable shivers you get during a fever) and I just knew I was going to get a bad fever but my body temp hadnt caught up yet. My heart rate was 140+ and eventually I did end up spiking a 103.0 temperature. I am delirious during all of this. Apparently got a chest xray to check for pnemonia and I dont even remember them coming. Alan kept telling them I need magnesium but they had to wait on blood work to come back and meanwhile started me on neutropenic fever protocol with IV antibiotics and blood cultures and the xray. Eventually my blood work comes back and my magnesium is at a 0.9 which is like record low for me. Alan says as soon as they gave me the magnesium my heart rate came down to like 90 and he's just like I told you she needs magnesium. 

Luckily no more fevers since that night and I think they are supposed to be checking my magnesium level daily now. At home we transfuse 4g every other day without even checking the level and it keeps me topped off enough. Thursday we were finally able to talk to Dr. Bixby and he at least.has a plan to try to keep my levels bumped up higher in an outpatient setting by double transfusing at my MWF appointments but he is going to trial double transfusions here in the hospital first. He seemed much more optimistic about things and was talking about scheduling around christmas and New year clinic closings. Dr. Bixby gave me hope and optimism but confusion because the other doctors said I'll be lucky to make Christmas but here he is talking appointments for NY and beyond. I'm not sure what to think. 

No matter what happens I thank everyone for their continued prayers and support. If you are wanting to help please contact the red cross and do a blood or platelet donation. If you are not able to physically or medically donate I ask that you make a post on facebook encouraging your friends to donate and ask your friends to make posts as well. Together we can hopefully help end the blood and platelet shortages that endanger the life of me and others like me every day. Filling the blood banks is the most helpful thing anyone can do right now. 

December 4, 2019 - The ups and downs of being home

On the Saturday after Thanksgiving I was talking to my doctor on morning rounds about staying for inpatient rehab vs going home.

Our conclusion was that while it would be beneficial for me to be stronger the PT obviously wasn't going to do anything to help my leukemia. And at this point things can go really south with my leukemia really fast. And it would be more beneficial to spend that time at home with family.

By south really fast I mean every week I make it back to the clinic my doctor doesnt work very hard to hide his surprise.

Once I came home I had 4 days of IV antibiotics which had to be administered every 8 hours. Except it takes half hour to mix the solution and half hour to run it. Plus having early clinic appointments MWF this week. So we were getting sleep in 6 hour bursts at most, sometimes much less for Alan. He even stayed up over 24 hours from Sunday afternoon IV to post-transfusion drive to Ann Arbor on Monday.

The one positive is that the oral chemo they put me on to lower my white blood cell counts is working. Right around the time we got back from orlando my WBC had sky rocketed to around 60 (normal range is 4-10) and blasts (leukemia cells) were 82%.

After a couple weeks on the chemo I'm back down to total WBC of 7.2 and blasts percentage of only 10%. The downside is that I am back to being extra low on neutrophils (the good wbc) which puts me back on high infection risk and my other counts like red blood cells and platelets are highly compromised too. These are an issue because of my brain bleed. If im low on hemoglobin im more likely to experience a fall and if im low on platelets a fall is more likely to be fatal.

This is making it harder and harder to justify leaving the house, even for appointments. Today on the way back in from my transfusions my leg just wouldnt lift up the stairs and Alan had to physically move my leg for me. And we are trying to minimize chances for falls so every time before we leave the house Alan unloads the (60 lb) wheel chair from the car, brings it next to the back door, helps me down the back inside steps (where we have to make sure neither of us accidentally falls into the basement), push me to the car, load all our other things for the day into the car, and reload the wheel chair.

I think that if I can make it through Christmas that I may decide to opt out of blood transfusions and enter hospice at that point, if things dont change for me strength wise with being able to get out of the house more easily. Plus monday my platelets were 5, I got a transfusion, and today they were 2. So I feel like they are just starting not to work anymore.

November 27, 2019 - Bad News All Around

Well where can I start off with this one. I'm currently in the hospital with a brain bleed, double pneumonia, and barely any ability to walk, talk or eat.

On Friday Nov 15 I had an appointment with doctor Bixby that I never made it to. Leaving the house I started to feel really dizzy and out of breath. I grabbed on to the fence to steady myself. I went down to the ground and we ended up calling 911 and being taken to Beaumont. While I was there we did several tests which revealed the subdural hematoma (brain bleed). We had already talked about it but by this point it was a definite we needed to go to UofM.

After about 8-10 hours at Beaumont, a scary bumpy ride in an ambulance, and and 2-4 hours at UofM ER we finally made it to the neurosurgery ICU. During all this time I never was allowed to get up and walk. It was always stretcher to stretcher transfers  and using the bed pan.

Then Sunday night when I was moving from the ICU to regular neurosurgery service I was asked to walk a couple steps. It was excruciatingly hard.

I spent a few nights in the neurosurgery service and started getting up to a bedside commode during that time, but I had to call for a nurse every time to help me up, I wasn't allowed up alone.

After a few days in the neurosurgery service they felt more comfortable about my brain bleed healing and moved me over to a general med / hematology service where they can better deal with my clotting/lack of clotting issues and blood transfusion needs.

So now I've been on this service for about a week. I was hoping to get out to go to Thanksgiving dinner but it's not looking good the doctor wont even give me like a 3 hour pass to go out. They said I'm still too unsteady and could have life threatening complications if I were to fall while out.

Physical therapy has been coming to work with me occasionally to help me relearn walking and build some strength. I am trying to get into a rehab program through the hospital that is intense physical therapy. 4x per day for 45 mins each session. I could be going there as soon as Monday if my blood transfusion needs can get down to only 1x per day or less. I need to get down to 2x per week to go home.

November 8, 2019 - Some concerning developments

Since my last post, my overall White Blood Cell (WBC) count has started to skyrocket, with the majority percentage of those WBCs being blasts (leukemia cells). Back when I wrote my last blog my total WBC was 8.6, still within the "normal" range of 4-10 with a blast percentage of 44%. As of today my total WBC is 43.7 and blasts of 72.6%.

When my total WBC first started to creep up out of the normal range my PA, Heather, came to talk to me on Monday Nov 4 about the possibility of starting on a chemo pill called Hydroxurea. This drug is not used to treat my type of leukemia. It is known to help reduce total WBC in AML but it is not expected to reduce the blast percentage or cause remission. The reason to consider starting this drug is that as the WBC count rises above 50 you become at high risk for strokes and heart attacks because the over abundance of WBC causes the blood to thicken. 

Since we are getting close to the 50 mark Dr. Bixby wants me to start the pill today. It will be 2 500mg pills per day, one in the morning and one at night. I'm a little afraid of the side effects reducing the little bit of quality of life I've finally regained. It will be expected to drop my counts significantly so that means more frequent blood transfusions, higher risk of infection, nausea, mouth sores, etc. 

In other news, just as my eye is almost completely healed my gums have started to become increasingly swollen. Sometimes the pressure is so great from the swelling that it feels like my teeth are going to fall out and it hurts to chew. There is also one really bad section in the back right on top where the gums have split open and keeps bleeding due to my low platelets. It forms these long, stringy blood clots that makes it feel like I have something stuck in my tooth. Eventually the clot breaks loose and my mouth starts bleeding again. It is annoying and gross to just have a mouth almost always filled with blood. There is also a section of swollen gums in the bottom right near my "eye" teeth that is compressing a nerve causing me to constantly feel like I just got shot up with lidocaine. Dr Bixby said he believes my gum issues are directly related to the increase in blasts/WBC and is hoping the Hydroxurea will help with that too, although it could end up making things worse because one of the side effects are mouth sores like I had on the trial drug I was on previously. 

I'm also becoming more bruised. I had Alan take a video of my legs that I'm debating posting. Bruises are easy to hide with clothes so a lot of people comment on how "good" it looks like I'm doing but no one can see that my body is a disaster. 

On another happier note we did take what was probably (but hopefully not 🤞) my final vacation this week. We left for Orlando on Monday after my blood transfusions and hit Universal on Tuesday, Epcot and their Food and Wine fest Wednesday, and Animal kingdom Thursday. Then we had to be on a shuttle bus from our hotel to the airport at 2:55 am Friday morning and drove straight to UofM after for my blood draw and transfusions. I ended up needing both platelets and blood so it's been a long day here. After my appointment I also had to stop by radiology to get an xray on my left hand because I injured it pretty badly on our trip. Hopefully it is just sprained not broken. 

Thanks for reading. Until next time...

October 24, 2019 - A trophy display of bruises

It's been about a month since my last blog and I saw Dr. Bixby today so I figured it was time for some sort of blog update, although nothing super major has changed. 

After I got diagnosed with pneumonia back in September we realized I needed to do some serious end of life planning, no matter how depressing it is. While I was in the hospital we went through the process of closing all of my $0 balance credit cards and transferring all of the utilities into Alan's name. After I got out of the hospital we started looking at different funeral homes and cemeteries and pricing things out. As anyone who has had the misfortune of planning after the passing of a loved one can tell you, dying is seriously so expensive. 

It was a bit of a morbid day but we got a lot of useful information and although we haven't finalized anything, we are pretty sure we know where we are going to go. I was having nightmares for about a week after we went, but it's a small price to pay for Alan to not have to navigate all of this on his own when the time comes. 

As for my health, things have been pretty steady to slightly improved in terms of quality of life since ending the clinical trial. 

My mouth and throat ulcers healed for the most part, but I have really swollen gums in a few places (including the roof of my mouth) which is causing me to still have some texture and taste issues. I've also started vomiting quite frequently so today we discussed adding a dissolvable zofran tablet in addition to the nausea med I'm currently taking. I'm also on a strict, scheduled regiment of both lomotil and immodium which is keeping my previous bathroom issues at bay. 

Due to low platelets I'm experiencing a lot more bleeding and bruising. I hate looking at my body in the mirror because all I see are cuts and bruises. I swear just lightly running my hand over an area can cause bruising and I also keep finding these random wounds, like areas of skin that just burst open for no reason. I also had the incident with the ruptured blood vessel in my eye that landed me in the hospital for a couple days and still hasn't healed. The unfortunate thing about low platelets is that I can just start bleeding from anywhere, at any time, for no reason. The big, dangerous ones are if I develop a bleed in my brain or in my intestines. So I need to be extra careful not to bump anything. 

Another thing I struggle with is breathing with exertion. I can't really go anywhere that requires walking more than 10-15 steps without taking my wheel chair because I will be gasping for air and near collapsing. Around the house I will be racing back to my bed or chair after doing something as simple as brushing my teeth or washing my hands because standing that long was just too much. Not sure if this is because of low hemoglobin, dehydration, just a side effect of the leukemia, or some combination. I used to only feel this way when my hemoglobin was really low, but now it's pretty much permanent. 

As for the leukemia itself, the percentage of blasts in my MWF blood draws has been slowly creeping up. Monday it was at 36% (I havent gotten today's results yet) sometimes it will randomly shoot back down on a blood draw but then it goes back up the next one. 

I've been trying to get out a little more now that some of my symptoms have gotten better. We've gone to the movies, the cider mill, a wedding, and the zoo. I'm not very good for going out to restaurants until I get the spontaneous vomiting thing under control. Yesterday we had gone to Texas Roadhouse and I had to stop eating after 2 bites of my mashed potatoes because I was afraid I'd have to turn the peanut bucket into a puke bucket. 

Today I saw my doctor and we talked about possibly going back on some sort of treatment now that I've been 2 months off the trial and solved some of the issues that were really causing me pain then. Several options that we brought up to him (that I read about through my facebook groups) he explained that they weren't a good candidate because they were the same or similar but weaker than chemos that I've already tried before that either failed or stopped working. He explained the cancer cells are kind of like bacteria that becomes antibiotic resistant. So since I had done X treatment and it didnt produce a sustainable remission it is likely that the leukemia cells that relapsed (and are now multiplying) are immune to that type of chemo. 

We also asked about the MYLOTARG which had been discussed before I went on the clinical trial but he said there was recently a study of that drug that basically showed if you had already gone through 3 or more types of therapy that MYLOTARG is even less likely to be effective. That one already had a low probability of working but with that new study it's even less and would mean committing to a month in the hospital to monitor for complications like infections, etc. 

He also told us that he is keeping his eye out on clinical trials and I'm at the top of his list if something comes up. He said there is something in the pipeline now but it won't be taking participants for another 3-4 months while more safety checks and evaluations and such are done. So basically if I can outlive the trial getting off the ground then that could be a potential option for me in the future. 

At the end of the appointment I asked him the big, intimidating question. I wanted to know based on my current condition and the fact that I'm not being treated how long does he think I have left. He said he cant really tell me that because I've already pretty much exceeded it. On average people who decline further treatment or run out of treatment options survive 2-3 months. I'm currently 2 months out from stopping treatment. He said though to also keep in mind that factored into that average survival time is the fact that the average age of an AML patient is 68. So, I've got my age and relative health/strength coming into this on my side. He said he's seen someone live as long as 9 months after stopping treatment, but that is a pretty rare case. 

No matter what the timeline is, I'm thankful for each new day I get to spend here with my friends and family. I'm thankful for each day I get to continue loving my husband and being loved and cared for by him in return. He is the true hero of this story. He makes sure I'm fed even if it means going back out for some food I have a random craving for, knowing I'll only take 2 bites of it. He helps keep my infection risk down by making sure I shower or brush my teeth even when I dont want to because I dont have the energy. He does all my laundry, all the shopping, all the cooking. All the household chores/maintenance and auto repairs (which have become more frequent on our 10 year old car). He makes sure I take my medicine, he administers IV magnesium and fluids, he cleans and flushes my PICC line on my non-appointment days. He drives me to Ann Arbor in awful traffic 3x per week most weeks, and then sits and waits in uncomfortable hospital chairs for several hours while I get my labs and transfusions. There's no one else* to do all of this, and I most certainly wouldnt have made it this far without him. 

Until next time...

* When I say no one else, i mean it is like a needle in a haystack to find someone else to drive me during times where Alan has been sick or injured at the time of my appointments. There are a select few people who have gone out of their way and helped occasionally, and I owe a huge thanks to those people too. 

September 23, 2019 - Drug Overdose Not Recommended

Since my last blog it has been quite an adventure, mostly in the hospital. 

On Saturday Setp 7 I woke up around 5am not feeling very well. I took my temp and it was 103.6 so I told Alan we needed to go immediately to the hospital. 

Once there they couldnt find anything immediately wrong with me. My temp came down a bit (but still fever), they did urine, stool, and blood culture samples, and a chest xray didnt show anything in my lungs. 

By Monday 9/9 they still hadnt figured out what was wrong with me. I was still spiking high fevers despite being on antibiotics and all the cultures were negative. The infectious disease decided they wanted a chest CT instead of xray. The CT revealed some fluid in my left lung and I also developed an angry cough during the day Monday. 

Official diagnosis : pneumonia. 

For the pneumonia they started me on cough syrup with codeine. 

I'm not sure when the itching started, but at some point I was feeling itchy all over my body. I tried benadryl to no avail. They then put me on atarax for itching which also didnt do much. I was scratching myself so much in my sleep it looked like I had cat scratches up and down my legs. Then came the skin rashes which led to a biopsy on Sunday 9/22. 

During all this time I had several visits with art and music therapy. I was also slated to go home several times, but a new symptom always popped up warranting additional observation. High fever, cellulitis in my ears, etc. 

On Sunday 9/23 I was scheduled to be going home the next day and things were looking good for it. My family came to visit and things were going fine. At some point my nurse came in with my meds which included a new med to help with the itching. I dont remember the exact name of the drug but it is a sister drug of narcan. 

Within a short time I was so sick i had to send my family home. What i thought was a routine trip to the toilet turned into hours of being unable to get up from the toilet because i would just immediately need to go back on. I was shaking and sweating and freezing cold all at once. My eyes were watering but I wasnt crying. I was throwing up bile  sometimes just dry heaving. At some point I noticed me legs and feet were extremely swollen. 

I thought I was dying. I called Alan and told him it was time. I was terrified that I was about to die alone. 

As it turns out this was an interaction of having the narcan related drug with the codeine. Over the course of nearly two weeks enough codeine had built up in my system that the other drug blocking my opiate receptors threw me into a full withdrawal. 

As I write this it is almost 48 hours later. I'm still having chills and sweats and shakes. I'm back to frequent urgent bathroom trips, which had been starting to get under control. 

Now they are saying they want me to go home today. I'm a little afraid but excited to be beyond these four walls. My biggest fears are the continued inability to control my bowels and of getting home just to spike a fever and head right back to the ER. 

I'm summoning all the good juju hoping I can get a few good weeks at home before the leukemia starts to get too bad. Will continue to do my MWF labs and transfusions as needed as long as they continue to work. 

September 3, 2019 - Beginning the End

Well another month has gone by already.

I'm not going to lie, August has been an extremely difficult and trying month. The side effects, whether directly or indirectly related to treatment or disease have continued to amplify.

One thing I am thankful for is that my joint pain did subside this month and I was able to fully wean myself from the oxycodone that i was taking. This in itself was a difficult process as I had severe withdrawal symptoms even after only about 5 weeks on the medication.

The new and more persistent side effects that I've been battling this month are mouth sores, nausea, and diarrhea. All of which are making it hard to eat or drink and all combined is leading to dehydration and malnutrition. I've lost another 17lbs this month which to my doctor is very disappointing.

At the risk of TMI but in the spirit of sharing my entire experience, because of the diarrhea that I have been having I find it difficult to leave the house for much other than blood draw and transfusion appointments. When I get the sudden urge to go I need to be able to find a toilet immediately. When I do leave the house I'm having to wear depends for fear of having an accident.

On most days I'm lucky to even choke my pills down, the sores in my mouth and throat are so bad that it hurts to swallow water, let alone pills or food. Chewing food is another thing all together. Most days if I eat at all it will be a small bowl of soggy cereal, a few bites from a stouffers mac and cheese, or maybe some pudding or jello. Those are just about the only things I have been able to tolerate without getting sick. I tried drinking a protein shake but i threw up later that same day and havent been able to clear the negative association from my head to try it again.

On Wednesday August 28 I had my monthly appointment with my doctor to check in on all my side effects and how I'm doing and feeling and also to get a bone marrow biopsy. Dr. Bixby set a pretty high threshold for me to continue on the trial. He said the blasts need to come in at around 5-10% or less (down from the 31% of last month) in order for him to feel comfortable allowing me to continue on this trial.

He said that at this point he would not allow me to do the MYLOTARG or any other chemo either, as these would just further weaken me and he believes there are single digit possibilities of another chemo even working. Essentially if the blasts from the bone marrow biopsy I was to have done that day were not within range he is recommending that I enter hospice care.

So that brings us to today. Heather, the physician assistant who does my biopsies called at around 4pm. She said that because of all the biopsies I've had done, the sample from my most recent biopsy was considered incomplete/inconclusive. However the blood smear from that same day showed 14% leukemia, and it would be estimated that the biopsy number is higher than that. 

They are offering to attempt another biopsy if I want to, but are overall recommending that I stop treatment. They will support me with transfusions of blood to keep my oxygen flowing and platelets to keep me from bleeding for as long as these will work. But as the disease progresses these will become less effective. I am meeting with a palliative care doctor next week and between all of these things we will work to keep me comfortable and pain free. 

We don't know how long the progression will take. It could be months, it's more likely weeks. When I relapsed last year I wrote that I didnt know if I would be here for Christmas. This year I can say with almost certainty that I wont. 

Please be patient and understanding if you reach out and I dont answer right away. While I would obviously love to see and hear from as many people as possible my main focus is going to be on my husband and my family at this time. 

August 6, 2019 - Sleep the day, let it fade

It's been a long month of appointments, events, anxiety, pain, and uncertainty. I've struggled a lot this month with depression and asking myself if everything I'm dealing with as far as symptoms and side effects is worth it. I spend most of my time in bed, and most of the time that I'm not in bed I'm wishing I was, just because I almost constantly feel a sense of discomfort. 

Alan really made an effort to get us out of the house this month and try to get us out of our own heads. We went to the zoo, the DIA, and a failed attempt at the science center but there were just too many kids. 

Every morning I wake up and take my clinical trial drug. Five little pills that smell like glue and chemicals, that are hopefully slowly saving my life. Just swallowing the pills instantly makes me feel nauseous and I'm not allowed to have any other medicine or any food or drink for 2 hrs before and an hour after. I usually try to fall back asleep for at least the hour after I take the pills, unless we have an early appointment that day. Then I don't have the luxury of sleeping til I can eat, and have to struggle through the nausea and get ready for a long car ride. 

At the end of the hour I usually manage to choke down a granola bar or some crackers. Some days that may be all I eat. Between the nausea, mouth sores, loss of taste buds, and an instant need to run to the bathroom most times after I eat it is hard to eat a meal. If we go out I might have a few bites of french toast or half a cup of soup. 

So now on to what you've all been waiting for. It's what I've been waiting almost 5 weeks for at least. The results of my 7/31 biopsy to determine if the lowered dose of the clinical trial drug is effective. I couldn't even get out of bed today, stricken with anxiety waiting for the call. 

Finally at around 1pm my phone rings. It's Heather (my Physician Assistant) and I ask her to hold on a second so I can call Alan into the room and put it on speaker. She starts by reminding me of the results of the previous biopsy I had on July 1: 55% disease. She then says that there was a moderate decrease down to 31% after a month of being back on the trial. 

So, medium news I guess. The first time around at the 700mg dose the drug too me from 36% disease to nothing detected after only 3 weeks on. Then I had a 7 week break from the study due to multiple infections in which my disease went back up to 55%. Getting back down to 31% is great, but not as great as getting back to 0%. 

They are giving me the choice to make for myself again. The results are enough that they will support me if I want to stay on the study to see if we can achieve some additional reduction with it. The results are also small enough that they would support me if I wanted to exit the study and move on to the MYLOTARG chemotherapy. I've mentioned this chemo before and it's the last thing currently commercially available to me, so for now as long as the trial is working *some* and we can hope for a further reduction in another month, I am choosing to stay with the trial. 

After we got the results I still couldnt get out of my anxiety funk. My nausea was really bad, my stomach hurt a lot, and I could barely eat half the peanut butter sandwich Alan made for me. I felt bad, because it was the 6 year anniversary of our first date and I could tell Alan really wanted to do something and make some happy memories for the day. I just couldnt do it though, my anxiety was eating me alive. I stayed in bed the rest of the day until finally taking some ativan to help me fall asleep. 

People often say to me that they want to help in some way, and I always come up empty. I hate asking for things or money and it feels really awkward to have you over to do my basic chores. But these are all needs that we struggle with. 

We are almost always in need of something off of this Amazon list. We go through paper towels and toilet paper faster than you can imagine. 

https://www.amazon.com/hz/wishlist/ls/18O1QQXBJBJF6?ref_=wl_share

Kroger gift cards for gas and groceries

If anyone has or can take a random MWF off work and wants to volunteer to take me for my blood draw and/or transfusions depending on the day, and just spend some time with me. 

Grass Cutting: Alan injured his back recently so this one would be really helpful to him. 

As always thanks for reading. ❤❤❤

July 9, 2019 - When my legs don't work like they used to before

Well if you follow along on Facebook you know that for the past couple weeks I've been experiencing a great deal of pain in my joints, especially in my knees. I'm not finding much relief for the pain in anything, including narcotic strength pain killers. The one thing that seems to provide some moderate relief is Ibuprofen, but I'm not allowed to take much of that.

Today I heard back from Dr. Bixby's office with the results of my bone marrow biopsy. In just a few short weeks from my last biopsy the percentage of leukemia in my bone marrow has gone from "maybe up to 5%" to 55%. They dont know if this grew because I was off the trial drug, or because the new 500mg dosage is not effective. 

They believe all my joint pain is leukemia pain, not a side effect from any medication. 

I have the option to stay on the trial drug until I have my next bone marrow biopsy on July 31 to see if being on the drug longer will bring the blasts back down or I have the option of coming off it and trying something else. The problem is we don't know yet what "something else" is. 

The problem is there arent many treatment options for leukemia to begin with and I have already done pretty much all of them including some newer approved ones and of course the trial. 

There arent many options left out there and this may be the beginning of the end. 

June 21, 2019 - Infections and bruised intestine

I was in the hospital from May 25 to June 2 for cellulitis infection.

While I was still in the hospital they got the OK from the study drug company to go ahead with the Neupogen shots to boost my neutrophils (those good, infection fighting cells) and so I started on those and had to continue the injections myself once going home. Luckily they came up pretty quickly so i only had to do 5 injections myself before being told i could stop. The injections are done in the stomach about 1 inch from the belly button on any side so my stomach is all bruised up because I had low platelets all during this time.

Unfortunately my hemoglobin and platelets did not follow suit so in addition to my MWF blood draws I also had to get platelets and red blood cell transfusions.

After stopping the shots they scheduled me for a follow up with Dr. Bixby and yet another bone marrow biopsy for June 12. I feel like this was about my 10th biopsy this year. I'm probably not far off on that count. It isnt normal to have this many biopsies or have them so frequently but between the study requirements and all this aplastic anemia stuff going on it's been necessary to more frequently assess what's going on.

On Monday June 9 I had a PET scan at Karmanos to assess the status of my Neuroendocrine Tumors and that scan came back with stable results compared to December 2018. I won't have to go back for another 6 months again.

At my appointment on June 12th Dr. Bixby said that regardless of the results of the biopsy done that day we would be restarting the trial drug the next week, but they just wanted to see the results before I started. He also said that i would be going down to only 500mg instead of the original 700mg.

The results of the biopsy came back showing a slight increase in the cells that produce healthy blood as well as around 5% "blasts" which the pathologist could not definitively say whether those blasts were immature cells due to the Granix shots I had been on or whether they were leukemia, but after 7 weeks of no treatment we kind of have to assume they are leukemia. So on Tuesday June 18 I resumed the study drug at 500mg.

Unfortunately that same day I landed myself in the ER. AGAIN. So I'm instructed to stop the study drug again until I'm out of the hospital.

On Monday I had been feeling a little sick to my stomach but chalked it up to having had especially bad eating habits over the weekend. By Tuesday morning my stomach was hurting pretty badly and by Tuesday afternoon I felt like I was constantly on the verge of throwing up and my stomach was getting these shooting pains that put my pain level at a 10 and it hurt worse with movement or touching it.

I called Dr. Bixbys office about this and they said to go to get evaluated for appendicitis or internal bleeding, especially since my platelets had been at 9 when I had my blood drawn Monday (I was scheduled Wednesday morning for a transfusion). We got to the UofM ER around 5 and after several hours including blood draws, platelet transfusion, ultrasound, and CT Scan they determined that I had an inflamed/bruised area in my small intestine. Basically this can just happen if you have low platelets. For reference a "normal" level of platelets is 150, mine had been 9 on Monday and were 2 when I arrived in the ER on Tuesday.

Treatment for this is to keep my platelets above 20 via transfusion, digestive rest, and observation. Digestive rest included a period of not eating or drinking anything. Since I told them other than a smoothie I hadnt been able to eat since dinner on Monday I was allowed to advance to clear liquids on Wednesday afternoon. Clear liquids was basically just broth, jello, and juice. I got through that ok and advanced to full liquids on Thursday which included creamy soups, pudding, cream of wheat, and milk products (yogurt, ice cream, milk shakes, etc). It's Friday now and I was allowed to advance back to regular food.

Hopefully I will be going home Saturday or Sunday as long as I dont have any issues with the regular diet. Once I'm back home I will resume the study drug again.

My next appointment with Dr. Bixby will be on July 3.

May 29, 2019 - "I try very hard to know just what to say"

On Wednesday (5/8) they decided that I could be released from the hospital and sent home on a pill form of the Vancomycin antibiotic that I had been taking. I'm to continue it 4x per day through the 2 week mark then taper down to 2x and finally 1x as a maintenance/preventative dose. I will stay on the 1x per day dose for as long as I'm continuing on the Cefpodoxime antibiotic, which is the one I take preventatively for blood infections.

Wednesday was also supposed to have been Cycle 2 Day 1 of the clinical trial. That day in my schedule for the trial included a new bone marrow biopsy to see where things were at. Even though I am still currently off the drug, I am technically still part of the study so Heather the PA came to do the biopsy before I was discharged. As always the biopsy was not fun but she could not find any liquid inside the bone to take out. I asked her what this meant and she said it could be 1 of 3 things: 1) she got a bad spot where the marrow just happened to be dry, 2) the marrow is just depleted because of all the chemo, or 3) there is too much disease in the marrow to get an adequate sample.

I of course was worried about it being #3 and Heather assured me she would be calling the pathology lab on Friday to hopefully get me some preliminary results or if not by Friday she would hopefully have some info by Monday.

Shortly after that I was discharged and we made the treck home.

Friday (5/10) I had to go in for just my routine MWF blood draw at the northville lab to see if I needed a transfusion. I already knew the answer because my nose was bleeding again and I could barely breathe if I was standing too long like brushing my teeth or making a bowl of cereal. So regardless of the test results they were going to be getting me in for both blood and platelets.

So we drive to Northville and get there around 11:30. Right as we are parking my phone rings and it is the generic UofM outgoing number so I answer it. I figured it was going to be the nurse asking me what time I was planning on going to get my labs, and i had completely put out of my mind that it was possible for Heather to call me that day with results.

I pick up the phone and I hear the voice of Dr. Bixby on the other end. I don't think Dr. Bixby has ever called me personally, usually it will be a nurse or if it is extra serious news the PA. Hearing his voice brings me back to the reality that we could be hearing biopsy results today and I immediately start to panic because why else would Dr. Bixby himself be on the line. Then he says "I've got some good news, I've been on the phone with pathology and preliminarily they are unable to detect any leukemia"

It took all of my will power to maintain some composure and ask him what this means for the study, for next steps, etc. He said that the big concern is that even though there is no sign of leukemia there is also no sign of my good cells regenerating either. Which is bad. So he has talked to the drug manufacturer and they want me to stay off the drug still for at least 2 more weeks or until my counts recover if that happens sooner. If my counts still arent recovering by my next follow up appointment on May 22, then we will do another biopsy at that time (yay) to see if they can figure out what's going on with my marrow. He also mentioned it might be a possible option that I start the pills back up but at a lower dose.

I obviously am thrilled about the no evidence of leukemia results, but because of the failed good cell recovery they are not calling it remission and it still doesnt put me where I need to be for transplant. I am also terrified about this break from the drugs since they were obviously working, but I cant kill myself trying to save myself so I will continue to stay off of them for safety reasons.

I continued to battle c-diff for about a week after I was discharged. Finally towards the end of the week (around 5/16) I was feeling well enough to leave the house for a couple hours. On Thursday that week we went to the zoo for a couple hours and Friday we went to see Ken Jeong stand up. Things seemed to be getting better. 

Then around 5am Saturday (5/18) I woke up with a 102 degree fever. I had a pain in my right armpit and some swelling in my left groin which I suspected was cellulitis based on past infections. We went to UofM ER and I ended up being admitted and put back on IV antibiotics. It was a short stay and I was discharged Tuesday in order to go to my clinic appointments on Wednesday and Thursday. 

Wednesday was talking to Dr. Bixby about the fact that my numbers hadnt recovered yet and whether I could be eligible for a transplant if my marrow remained "aplastic" which is basically to say that it isnt making any cells leukemia or otherwise. I got a platelet transfusion and also another bone marrow biopsy. 

Thursday was the wound care clinic for a consult on how best to treat the open wound (initially caused by October 2018 cellulitis) that is in my left leg crease. Like imagine the leg equivalent location of an armpit, that's where my wound is. The wound team came up with a plan of action for the wound to be packed with a dissolvable collagen foam and removable gauze strips. It was a pretty intense and painful process. 

Friday evening I took a shower and noticed that the areas where I had cellulitis the week before were becoming painful again despite being on pill antibiotics for that infection. Alan took a look and both locations now had an open sore on them. So we called the after hours number and they advised us to go to the ER even with no fever. 

So now I've been back in the hospital since friday night (5/24) on IV antibiotics for the cellulitis and waiting on a consult from wound care for the 2 new wounds, which took forever because of the holiday weekend and they finally just came today (5/29). I feel like they really addressed each wound individually and we have a good plan of care for each of them. Also the major wound is much more shallow now it was 0.9 on Thursday and is now 0.3 so that is good.

Other news we got today from the bone marrow biopsy is that my marrow is still aplastic. They dont see any signs of the leukemia but also dont see any signs of the good cells that regenerate the blood cells I need like hemoglobin, platelets, and neutrophils. Also discouraging is that even though there is supposedly no sign of leukemia in the marrow there are circulating blasts in my blood. At this point they are not really sure what to do with me. Dr. Bixby will reach out to the study sponsor to see if its appropriate to give me a cell boosting shot for my neutrophils and he might ask Dr. Alousi at MD Anderson if they would be willing to consider a transplant while I'm in an aplastic state. 

So that's where we are at right now, cautiously optimistic about the fact that there is no leukemia in the marrow, but also understanding that because of the additional circumstances of the blasts in my blood and the aplastic marrow this is still far from being considered remission or being ready to move on to transplant. 

May 7, 2019 - Back to the hospital

On Wednesday (May 1) I went for my weekly clinic appointment with Dr. Bixby and my trial appointment where they draw my blood and do an EKG immediately prior to me taking my study drug. At the appointment with Dr. Bixby we discussed some of my new side effects which included mouth sores, the overall body aches, and an increased frequency and urgency with going to the bathroom. When i described the last symptom they decided they wanted to test me for c-diff infection and gave me a kit to take home and bring back to the lab on Friday.

On Thursday I was in pretty bad shape, slept most of the day before we went out for food. Alan was craving coffee and donuts so we went to Krispy Kreme where I could only eat half my donut. I was craving tacos so we went to this new place in Troy and I couldnt even finish one taco. Dont get me wrong, the tacos were good my appetite was just bad. Once we got home I started feeling chilled and when we took my temperature around 7:45pm it was 101.7 so we got started packing up to go to the ER.

We decided to make the drive all the way to Ann Arbor, and by calling ahead to the leukemia on call doctor I was already pre-admitted to the ER and got put in an ER room pretty quickly. They got me started on fluids, antibiotics, magnesium, potassium pretty quickly. Drew blood cultures and took other samples and the c-diff which is a GI infection came back positive.

I finally got admitted to a room at 5pm Friday, after 20 hrs in the ER. Alan had slept in the car part of Thursday night and I finally sent him home at like 10am Friday. Once I was admitted he came back to bring my stuff, but my actual room wasnt much bigger than the ER room so he wasnt able to stay.

Now today is Tuesday so including the night in the ER I've been here 5 nights. They are talking about possibly sending me home today, but I'm still hitting the bathroom about 8x per day so I'm not sure how i feel about that. I've also still been getting low grade 99.x fevers every night around 7 or 8pm despite being on antibiotics. Dr. Bixby has paused my clinical trial meds until I'm no longer fevering, so that's freaking me out too as I've now skipped 5 days of them.

Today I talked to Heather, the PA for Dr. Bixby and she said they've talked to the study sponsor about my infection and now they want me off the drug until the biopsy results come back, so at least another week. I'm so nervous about what this could mean for my disease progression during this time. 

Oh and my hair finally started falling out on Friday. It's been tingling for a while but Friday was the first day I ran my hand through it and came away with a handful. All my showers while I've been here have resulted in a huge amount of hair loss and my pillows are covered in hair too. Alan is coming today and bringing the hair clippers so I can just shave it. 

Back before I started the trial I requested free hotels through the American Cancer Society for Tuesday and Wednesday night so we could potentially not have to make the early morning drives and not have to drive back again Thursday for transfusions and other stuff. This is the first week it worked out that they were able to find a hotel to fulfill the request so Alan is able to stay in a nearby hotel for the next 2 nights if I'm still inpatient or if I get discharged today we will still stay there since I'll have my appointments tomorrow. This is helpful since my room is not good for having him sleep here but now he can visit me without driving back and forth. 

April 29, 2019 - Weekly Updates

Wednesday, April 24, 2019

Today was Clinical Trial Day 15. Like every Wednesday so far, we had to head out around 6am to get my labs at 7 and an appointment with Dr. Bixby at 8. Then it was over to the study clinic for one set of pre-dose labs and EKG. Then after I took the pills we were able to go home. We were back on the road before noon, much better than our previous 2 weeks.

I talked to Dr. Bixby about some of the side effects I've been having which included:

- I'm always cold

- weird heating sensation in my left heel

- low grade fevers that come on in the evening then break with a cold sweat around 6am

- dull, constant headache + random electrical zaps through skull

- full body ache especially in ribs, lower back, and legs

The most concerning things are the fevers (if they spike higher I'll have to be admitted for infection protocol) and the body aches.

Today the body aches were so bad it was unbearable. I finally gave in and took some tramadol. I thought maybe my leg muscles just needed to be stretched so after we got home I suggested to Alan maybe I needed to go for a walk, so we went to Somerset.

While at the mall I needed to use the restroom and afterwards it took me 15 mins to stand up. I thought I was either going to have to ask a stranger for help off the toilet or get Alan to come into the women's restroom. My legs just weren't working properly to push me into a standing position.  I finally got enough leverage off the walls to get myself up, but it was pretty scary not being able to use my legs as normal.

After this we left the mall and I also needed help getting in and out of the car and up the steps of our porch. Our last step is really steep and it was hard to lift my legs, it felt like they had 100lb weights tied to my ankles, so I also thought I may not even be able to get into the house! Eventually I did get in and I just went straight to lie in bed.

After a few hours in bed I got up to get some food and my legs were feeling better but not 100% I dont know if the walking actually helped them but it was a delayed effect or what.

Thursday, April 25, 2019

Today was a day I've been looking forward to for a while. Alan got free tickets to see Aziz Ansari at Caesars Windsor and we got a free room for the night as well. Kind of a fake little 2 day vacation. I was worried my counts would be too low but we asked my doctor about it on Wednesday and he said no reason not to go if I was feeling up to it, just wear my mask and wash my hands.

Monday, April 29, 2019

The comedy show on Thursday night was really good, despite the fact I was in full body pain. Our comped tickets ended up being floor seats and the casino brought a wheel chair up to our room before the show so I didnt have to walk or climb steps which was a relief.

On Saturday morning I started having a slightly bloody nose so I got put on "no blow" restrictions. I called the weekend on call doctor to see if I should go to the ER and try to get transfused or if I should wait until Monday. She called Dr. Bixby to verify just because I was on the trial but the end decision was no ER unless I got a nose bleed that wouldnt stop with affrin spray and leaning my head back.

Saturday we also got the delivery for my IV at home magnesium, which Alan hooks up to run over 8 hours while I sleep. I woke up Sunday morning with my body feeling much less sore, but towards the end of the day I was in excruciating pain again. Did the magnesium again Sunday night (even though it's supposed to be every other day) and again woke up feeling better today, so I think the body aches are definitely magnesium related.

Today one of my nurses at UofM coordinated with the office of my Beaumont Hematologist for him to put in orders for me to get transfused 2 bags each of platelets and red blood without having to go in for a clinic blood draw first (since even if my counts weren't at transfuse level I am obviously very symptomatic). Once I got to my bed at the transfusion center they drew a CBC and my hemoglobin was 7.1 and my platelets were 1. That's not a typo, they were ONE. That terrifies me. On Wednesday I will be talking to my doc about what kind of transfusion protocols we can put in place for a Friday or Saturday transfusion to keep me from hitting these critically low levels over the weekend.

Soon after I got here another patient arrived to get platelets and then a tech arrived to announce she would be giving him a bone marrow biopsy in this room. To clarify the outpatient transfusion center is just a slightly larger than normal hospital room with 4 beds, one in each corner and you have the option of pulling a curtain for "privacy". Immediately upon hearing the words bone marrow biopsy I started to tense up and I felt a pain in the area of my last biopsy. My nurse noticed that I seemed to be freaking out a little just at overhearing it so she brought me a warm blanket and checked in on my a few times. They used a power tool on this guy, I could hear it. I do NOT get my biopsies done with a power tool. I would probably lose my mind at the drilling sound.

As far as how things are going with the trial, today is day 19. I'm starting to get sores in my mouth. My body still aches but possibly from the low magnesium. My good counts are obviously suffering a TON and it is effecting my quality of life to have to wait until Monday for a transfusion when I clearly needed it over the weekend. But my alternative there this weekend was the ER and probably getting admitted which i rather avoid. So we need to figure out a better schedule.

Thanks for reading!

April 22, 2019 - Clinical Trial Updates and Plummeting Counts

Finally, a non backdated post. I am really going to try to make an effort to post everything here from now on because I spent the better part of all my free time these past 2 weeks trying to update this blog so that it tells my story all in one place. I think I will use the blog as a place to draft updates throughout the week and then publish and post on Facebook about every week to 10 days when I feel i have enough content. 

So far the trial is going ok. Every day I have to take 7 pills of the trial drug. I can't eat for 2 hrs before or 1 hr after so I normally wake up, take the pills, and go back to sleep for at least an hour so I can sleep through all the fasting. On clinic days (every wednesday) I have to take the pills at the clinic because certain labs need to be drawn first. So I try to eat a small breakfast when we first get on the road assuming it will be at least 2 hrs by the time we drive, get labs, see my Dr. Etc.

Last week we had a bit of a snafu with regards to the trial. When I agreed to start it we were given an informational packet with the consent forms at the back. The packet outlined specifics including when we would have to come to the clinic and what tests would be performed on those days. 

If you read the last update you know that on the first day we had a long day with blood draws and EKGs every so often up until 8 hours after taking the drug. Well in the packet I got it said the next long day like that would be on day 15. But we got over to the trial clinic for day 8 and they said it was another 8 hrs of testing that day. We were quite a bit upset because I also had to get a biopsy that day and needed platelets that i assumed I could get that day, saving us a trip for Thursday.  But with them needing to check my levels I wasnt allowed to get any blood products that day. 

After a little back and forth with the nurse about this she brought in the clinical trial administrator who gave us a copy of her protocol calendar. It did show that the long day was scheduled for day 8 and not 15, but it also had a ton of typos in it including spots where it referred to the previous study 3201a instead of my study 3201b. It was like they did a very poor copy and paste job and just seemed highly unprofessional that not only was my consent paperwork different from the actual schedule but that their schedule named another drug. 

In the end we decided to continue with the long day even though I hadnt originally consented to it and the nurse was able to get us $20 in vouchers for the cafe since we hadnt planned ahead for another 14hrs away from home day. 

As for side effects of the drug so far, I have very bad gas and increased neuropathy specifically on my left side. Back 3 summers ago when I first started chemo for my NET I used to get this weird warming sensation in my feet, where they feel hot internally but of you touch my foot from the outside it isn't hot. That is back. I also gained 7 lbs from day 1 to day 8 of the trial. And my good counts seem to be plummeting. 

On day 1 of the trial my hemoglobin was already low so I got blood on day 2. My platelets had been holding out around 30 for weeks before the trial and by day 8 they were at 16 and I had a lot of bruising and some bleeding so I had to get platelets on day 9. I get my blood checked on Mondays as a touch point between clinic appointments and today (Apr 22, trial day 13) my platelets were only 4!! And my hemoglobin, which had been 9.5 last Wednesday was down to 7.6. 

For reference on these counts a normal platelet level is at 150+ but they dont normally transfuse you until you drop to 10 or have symptoms like severe bruising and bleeding. Which is why I was able to get transfused last week at 16. On the hemoglobin normal level is 12+ and I transfuse at 8.0 or symptoms of dizziness and short of breath. The fact that they dropped back down so fast is scary to me. It means I may need to increase my frequency of blood draws so that I can make sure my levels stay good or I may even need to go back inpatient if my transfusion needs are too frequent. 

On top of my good counts tanking so terribly another concern is that blasts have started spilling into my blood. Blasts (aka leukemia cells) in my blood is how they initially suspected I might have AML and how they confirmed my initial relapse in October. Once I started the Decitibine + venetoclax in November my blood blasts eventually went to 0% and up until day 1 of the trial (Apr 10) had stayed there. They were only at 1% on that day but still concerning that now the level of blasts in my marrow was great enough that it was coming through on my blood work too. And on trial day 8 (Apr 17) that had increased to 2%. So I was concerned that I've been on the trial drug for a week and the percentage went up not down. But my doctor said we cant really judge or be concerned the trial isn't working until we get through the first month and take that cycle 2, day 1 biopsy (May 8) . The differential isnt back yet on my blood draw for today so I wont know until tomorrow if the blasts went back down, rose more, or stayed the same. 

So since I needed transfusion so desperately today we were able to coordinate with my local hematologist, Dr. Ashkar at Beaumont, and I am here now getting my blood and platelets. This saves us a trip to Ann Arbor and the possibility of having to also go back tomorrow for extra bags or go through the ER at UofM because over there the transfusion clinics close at like 6pm and here they have a special 4-bed outpatient transfusion room that is open late. 

So that is pretty much all the updates through (almost) the end of week 2 of the trial. More to come later. 

April 11, 2019 - Beginning the Clinical Trial

*Backdated Post*

*Some content copied from Facebook Posts*

On March 27 I went in to have all of the pre-tests done for acceptance into the trial and to sign my consent forms. The pre-testing was pretty simple: blood draw, 3 EKGs run 5 mins apart, and a bone marrow biopsy. Ok, so the biopsy isn't exactly simple especially considering I had just had one done less than 2 weeks ago, but it was a necessary evil. 

While waiting for the trial to begin we got back the results from the March 27 biopsy and it showed that my blasts had gone up to 26% (from just under 7%) and I was freaking out because we still had another 2 weeks after that biopsy of no treatment so who knows how out of control the leukemia could get during that time. 

Finally day 1 of the trial came. It was a long day where I had to have multiple blood draws and EKGs, and we ended up leaving our house at 6am and not getting home until 8pm. Below is what I wrote about on Facebook that day.

Apr 10:

Clinical Trial Day 1 today.

Had to leave home at 6 to get here for my 7am blood draw.

Saw the PA for my doctor and the study coordinator then headed over to the research lab.

Before I could take my pills I had to have an EKG run 3 times, 5 minutes apart and have another sample of blood drawn.

Then I had to take 7 pills. Somehow cohort 5 is 700mg. Not sure how the math works out on that one, but ok. I'll have to take these 7 pills every day in addition to the 13 pills per day I already take for other things. No food for 2 hours before and 1 hour after.

Another blood draw 30 minutes after taking the pills. Another blood draw and 3 more EKGs at the 1, 2, 4, 6, and 8 hour marks.

March 22, 2019 - Failed Chemo and next steps

*Backdated Post*

*Some content copied from Facebook Posts*

I completed the cycle 3 of reduced intensity Decitibine + Venetoclax on March 10 and I went back to meet with Dr. Bixby on March 15. They hadn't been planning to do a bone marrow biopsy at that time, but due to the fact that my good blood counts weren't recovering at the expected rate they decided last minute to go ahead and do one. Always fun to find out last minute that you're having that procedure done especially on top of finding out something was probably wrong. 

At the appointment we discussed our hopes that my marrow was just tired and sluggish from all the chemo and that we would be able to plan to either go to Houston for transplant (if biopsy showed remission) or for another cycle of Decitibine+venetoclax if I still wasnt quite in remission. But we also discussed the negative what ifs. That he would give me the option of a clinical trial or another type of chemo (more on these in FB posts copied below). 

During my appointment we talked about how well I had tolerated the reduced intensity Decitibine + Venetoclax and how I hadnt gotten any fevers or infections. Then I ended up with a fever later that night and ended up going to the hospital at 3am. I got admitted and started on IV antibiotics but all my cultures came back negative for infection so they sent me home on the 19th so that I could make my clinic appointment with Dr. Bixby on the 20th. 

Once we got back all the results and decided to go with the clinical trial I got set up to do my pre-tests on March 27 and start the trial on April 10. 

Mar 18:

I feel like I only get bad news lately. 

One month ago I had just barely 1% residual leukemia keeping me from getting a transplant. They asked me to do another round of chemotherapy in hopes of beating that last bit out. Unfortunately it had a reverse effect, and my biopsy Friday showed almost 7% leukemia now. 

They are sending me home from the hospital tomorrow and I see my doctor again Wednesday. There is an option of a potential clinical trial, but I'm not sure how I feel about it. We are going to call MD Anderson to see their thoughts on the trial UofM is recommending vs other potential options.

Mar 20:

This is a really long update so grab your reading glasses and get comfy...

So today we went back to UofM to meet with Dr. Bixby and get the final results of my biopsy from last Friday and discuss next steps. 

The final results were 6.5% blasts and we also learned that the biopsy at MD Anderson last month was actually 5% not 1%, so this result is "within the realm of stable". However, my blood counts are still not recovering or stable. For this reason he is definitely recommending that we NOT repeat a 4th cycle of the Decitibine and Venetoclax which I have been on since November. 

At this point he said that I have pretty much exhausted all but one clinically approved drug for treating AML, which is called MYLOTARG and which is yet another IV chemotherapy. It is a very harsh chemo that would guaranteed tank all of my counts again and also has risks like blood clots in the liver. There is an increased risk of these clots if I move on to get a transplant afterwards, and doing this drug could even make them more hesitant to even do the transplant on the future. It is also a one-shot remission drug. Which means that if I take it and it reduces the blast percentage but doesnt fully put me in remission, we cant do a second round in hopes of further reduction. This is the absolute last ditch FDA approved chemotherapy that I can try before reaching a point of hearing "I'm sorry but there is nothing else we can do" 

The other option that is being offered to me is a fairly early stage clinical trial. I still have to be accepted into the trial before this can officially become an option but my doctor is almost certain that I will be approved. The trial drug doesnt even have a name yet it is so new, currently it is just going by the code name DS-3201b. They have not released any information on whether the current study participants have benefitted from this drug or not, so it's kind of a total shot in the dark. 

The way the first phase of the study works is that they bring people on in waves of 3-6 participants at a time. The first group of people got 100mg of the drug. This is called cohort 1. After a month if no serious side effects are seen they recruit 3-6 more people which they give 200mg of the drug for cohort 2. And they continue on upping the dose by 100mg each time until they reach a point where they think they have found the maximum effective dosage. Once you are in the study though, you stay at your original dosage. So a cohort 1 participant would never be able to move up to 600mg even if that was found to be the most effective dose. 

If I join the study I will be part of cohort 5, which means I will get a 500mg dosage of the drug. My doctor said he believes most cohorts so far only had the minimum of 3 people, so I am in all likelihood one of the first 15-20 humans in the world to take this drug. I would be the first person at UofM to join the study. 

My doctor favors me joining the study now, vs moving on to the MYLOTARG chemo for multiple reasons. 

1) The timing just happens to line up that my current chemo failed and the study is open for accepting the 3-6 new patients for cohort 5. If I go for another treatment option now, this trial may not be open in the future. But if I do the trial now, the MYLOTARG will be there as an option if this doesn't work, if i choose MYLOTARG now, I may not be able to get into the trial later. 

2) in addition to clinical trials in humans the company is also doing laboratory tests of the drug where they test it against different subtypes of leukemia and in different dosages. Just TEN days ago they sent my doctor an email letting him know that in the laboratory testing they are seeing a higher rate of response to the drug in leukemia that has an MLL rearrangement mutation, which is what I have. Currently there are no other drugs or trials which lean towards having an advantage for this mutation. If anything the MLL rearrangement generally shows LESS response to almost all drugs on the market compared to other AML subtypes. 

3) this drug is given outpatient as a pill, and isnt expected to tank good counts as bad as traditional chemo (although my counts are currently super low already and the drug will still likely affect them more). 

Based on all of this information I agreed today to start the process of finding out if I qualify for the trial. This will take some time and I will have to have a bunch of tests done like ANOTHER bone marrow biopsy, 3 EKGs, and tests on my liver and kidney function. If approved it will probably be about 10-14 days from now before I would start the drug. 

Once I start the drug there is a lot of monitoring involved including some days where I have to sit at the clinic for 8-10 hours to get my blood drawn every hour after taking the pill to see how my body is metabolizing it. There are also frequent repeats on the bone marrow biopsy, EKG, and liver/kidney tests. These frequent checks are another thing that helped me decide to participate in the trial. If at any point the results show that the drug isnt helping or my blasts increase on the repeat biopsy or if I feel like the side effects are too much I can quit the trial. Pretty much i can decide to quit at any time for any reason. 

So that's the latest and (not so) greatest. I should know by the end of the week my potential start date and then get all the testing scheduled from there to see if I'm approved. Thanks for reading.

February 22, 2019 - Still moving towards remission

*Backdated Post*

*Some content copied from Facebook Posts*

After being discharged from my 46 night hospital stay on January 25 I spent some time struggling to regain my strength. We made another trip to Houston to once again assess my eligibility for transplant if I was able to get back in remission. The results of that ended up being that I was not quite in remission resulting in needing to start another round of the Decitibine+venetoclax but this time it would be done outpatient.

Upon learning on Thursday (2/14) that I would be starting chemo again Monday (2/18) i told Alan that I wanted to do something really fun over the weekend. We ended up doing a really crazy thing and going to Orlando. We left late Thursday night and drove a rental car all night/almost all day Friday. Another crazy 36 hours of no sleeping. We got to our hotel and slept hard before going to Universal Studios on Saturday. The main reason for this trip was to go to the Harry Potter attraction. It was a tough day because I did not have theme park level stamina and I also had some digestive issues throughout the day. In retrospect we should have rented the motorized scooter cart in order to have a more enjoyable experience that day but overall I really enjoyed it and was thankful to have gotten the opportunity to finally walk diagon alley and hogsmeade and ride the Hogwarts Express. The next day we decided to go to Epcot where we were smarter and rented the electric scooter for me to ride around in. Things went much better but we definitely could have done with a few more hours to explore all the countries. Monday morning we flew home super early to begin my 3rd round of chemo outpatient at UofM that same day.

Feb 4:

Today was a day of rollercoaster emotions.

Started out waking up feeling really good and folded/sorted several very neglected baskets of laundry.

During all of this I was taking back and forth calls from UofM and MD Anderson and finally concluding that I would fly to Houston for an appointment with my doctor there to determine my fitness for transplant and have the biopsy done there. If all goes well they would plan to schedule me and my donor back either the 18th or 25th to start the process for the transplant.

Then, I went at 3pm to have my routine blood draw done. The results were not encouraging. My neutrophils and hemoglobin both dropped since Friday; not good since they are supposed to be at a point of rising on their own now. My hemoglobin dropped so far that I needed to have a transfusion tonight (which I only just got home from).

We can't be sure what this means without the biopsy being done, but I went from feeling this morning like everything was finally falling in place for the transplant to feeling this afternoon like I just keep pumping my body full of all this chemo with no end in sight.

I am sick of living like this, unable to make any plans for the future. Pumping my body full of chemicals that keep making me sicker. I just want to be in remission, get my transplant, recover and move on. I know it wont be that simple to just bounce back after the transplant but I need a break and some good news somewhere.

Please think good thoughts for us as we prepare to travel to Houston for appointments all morning next Monday and for good results from the bone marrow biopsy that I will have while there.

Feb 12:

At the airport waiting for our plane to board. Somehow our "randomly assigned" seats ended up being in row 1 for the "big front seats" aka as close to first class as you can get for it being Spirit. So that is exciting because we dont have to deal with a 3rd person in our row and extra leg room.

For those wondering about how things went at MD Anderson, we didn't get any real update as for the timing of the transplant yet. The greatest thing that was accomplished this trip was that after seeing me in person and talking about the progress I've made toward recovery since my hospital discharge, Dr. Alousi is still agreeable to doing the transplant.

The big question mark at this time is still whether or not this last round of chemo put me into remission. I had my bone marrow biopsy done yesterday morning, and we expect results sometime between Wednesday and the end of the week.

If the results show no disease we could be heading back to Houston as soon as next week. They unfortunately won't discuss exact timing until those results are back so we are still stuck in a waiting game.

Thanks to everyone for your texts, comments, likes, etc. We appreciate all the support as we go through this stressful period.

Feb 15:

Trying to see the sun through the clouds today. Not going to lie - it's really difficult.

Dr. Alousi from MD Anderson called me Thursday with the results of my bone marrow biopsy: there is still 1% leukemia left in my marrow. Because of this, they will not proceed with the transplant at this time.

He said that because of how aggressive my leukemia is, if they were to do the transplant while I still have this 1% disease left there is an extremely high likelihood that the leukemia would just come back in the donor cells. I mean, there is already a pretty high chance of that (around 70%) because of my mutation type, but this would make it even more likely.

I also happened to have a follow up appointment with Dr. Bixby from UofM yesterday. At the time of my appointment we hadn't yet heard from MDA and so he wanted to come up with a contingency plan just in case the biopsy didn't show a complete remission.

The decision was that I will do another cycle of the same chemo that I had in November and December, but this time I will only do 5 days of IV Decitibine instead of 10 and I will do them out patient instead of being admitted to the hospital. I will still do 21 days of the Venetoclax chemo pill.

After this we will wait for my counts to recover again and then do another biopsy. This will probably happen in about 4-6 weeks from now. If the chemo is able to knock out that last 1% then MD Anderson will reconsider my eligibility for transplant at that time.

The good news is that I did have a response to the chemo to give me the reduction from 10% to 1%, but like I said trying to focus on that sunshine through the clouds right now is very difficult.