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.