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.