I am an Individual

When my youngest child, Edna, was little, she came out of her room one day and cried, "I am an individual." We had to have a discussion to understand why that was traumatic. Once she explained it I understood perfectly.

What she meant was that she knew she was different from her siblings and everyone else that she knew. I totally relate to that. It is something that I have struggled with all of my life. As I try to be truer to myself it becomes more apparent that I am an individual. I have always longed to be like everyone else. My family has thought it strange that I wanted to be part of the LGBTQ community. I could never explain it before but now I can. I love that community because it is full of people that are not trying to fit themselves into a mold that they don't belong in. I have been doing that all of my life. I want everyone around me to be happy and comfortable. I have been willing to bend and mold myself in ways that I thought would make that happen. I am learning that I am not responsible for the happiness of others. That is a tough lesson. If I am not responsible for the happiness of my children, that means that my parents are not responsible for my happiness! (gasp) I am not sure that I like that. But in turn I am not responsible for the happiness of my parents. That is freeing. My husband has told me many times that I don't allow him to have his feelings. That is because I am uncomfortable with negative emotions. They are painful to me. But I am learning. Little by little, I am learning to be the real me. Not everyone will like the real me. But if I'm honest, not everyone liked the pretend me either. That's ok. I am allowed to change my mind, my opinions, my clothes, my beliefs... But my core person is the same. I am getting to know who that is.

Sarcoidosis

On July 26th I finally got my diagnosis. It is Chronic Sarcoidosis. I thought that was something that they made up for the TV show "House".  It's real and I have it. I have probably had it for 25-30 years. It's just really difficult to diagnose. It is called the snowflake disease because it manifests differently in each person it attacks. I have it in all of my lymph system. That is the part of your body that fights infection. So, I get sick a LOT. I think this is my 4th course of antibiotics for the staph infection in my left maxillary sinus (that's in my cheek). That sinus has Sarcoidosis. It has also affected my neurological system. I have Small Fiber Neuropathy, Dysautonomia, and Orthostatic Intolerance. Because of the Dysautonomia I get dehydrated easily, I'm usually light headed and my heart beats faster than it should. The Sarcoidosis is also in my eyes, my joints, my muscles. It is also in my lungs. I have shortness of breath and chest pain. It is in my skin. I am pretty sure that Sarcoidosis is the cause of all of my abdominal surgeries. I will ask them to biopsy the material the next time they are in there cleaning up my abdomen.

The best website I have found for learning about this disease is www.stopsarcoidosis.org. I have actually learned more there than I have from anywhere else, including my doctors.

My treatment options are very limited. Usually the first step is a steroid like Prednisone. Prednisone can cause Diabetes. I am already an uncontrolled Diabetic so that is not a great idea. Then they try immunosuppressant drugs like methotrexate. My immune system is already weak. As I mentioned I am on my 6th month of a staph infection in my sinus. So, for now we just treat symptoms and hope it disappears as mysteriously as it arrived.

Approved for Disability

I just got approved for Long Term Disability. Why am I not jumping for joy. I thought I would be so happy. The emotions involved in this process are crazy. It was humiliating that they had to request records from all of my doctors to prove my disability. I would rather go to work. I love my job. Some people think I am crazy but it is true. Maybe because I have been on disability before, I know there is no glamor in it. It is actually heart breaking. I am 46 years old. I see other people my age going on trips, hiking mountains, running marathons. My achievements are walking to the mailbox, meeting my therapist on google hangout so I don't have to go to her office, finding a medication that helps instead of making me worse. I don't want to be on disability. I was kinda hoping I would be denied so I would have to return to work. That doesn't mean I am well enough but I was hoping my righteous indignation would fuel me. I would rather have 100% of my pay instead of 70%. I'd rather get quarterly bonuses and annual raises because I'm good at my job. I'd rather think about whether I want to stay in my current role or move to something that challenges me in a different way. I would rather spend time with my colleagues planning potlucks and celebrating their birthdays. I am grateful. I have good benefits and a good support system. But I think I will cry for a while about what I have lost. The disability company will reevaluate my situation in December. Maybe I will be healthy enough that they will deny me next time. I will hope.

Grieving the Loss of Me

I returned to work on Monday, May 22, 2017. I didn't get well. I just decided I could do it. A lot has happened in the last few months but I'm not going to get into that right now. On Tuesday, there was a work activity where we went to the park, played games and ate. I went. I played the little that I could. It was fun. But the best thing I did was remember.

As a child my favorite day of the year at school was track and field day. I enjoyed the long jump. I loved the hurdles. I was never much for team sports but I enjoyed challenging myself. I loved climbing trees.

In middle school we did track for a few weeks and I loved it. Especially the hurdles. I have long legs and it felt good to soar over the hurdles. I still remember the feel of the track under my feet as I would run and fly.

In high school I danced. I was in a performing arts high school. I danced 4-6 hours a day. I loved modern and ballet. I loved the grand jete. That feeling again of flying through the air. I dreamt of dancing with Mikhail Baryshnikov.

In college I tried dancing again several times but something had changed. My body didn't move like it used to. It was slower and it hurt. Eventually I switched to music. But even with that I was slow, my timing was off. My ear didn't work as it should.

I never gave up on fitness. I always thought if I work a little harder eventually I will get there. As recently as December I saw my trainer and was lifting weights. He became concerned and had me sit in his office until he thought I was well enough to go home.

Now I use a walker. I never know when I will need to sit down or put my feet up. I have dysautonomia. My neurological system doesn't work the way it should. I still push myself to do as much as I can but it is a lot less than I used to do. When I left the park on Tuesday I was in pain from doing more than I could handle and dehydrated from getting too much sun.

In my mind I can still run and fly through the air.

What Is Happening To My Body????

On January 17th I was at lunch with my friend when suddenly I felt like my energy was just gone. Someone had pulled the plug. I am a type 2 diabetic so I thought it was a result of the macaroni and cheese that I had eaten. We went for a short walk. I didn't feel any better. I checked my blood sugar and it was 123 which is actually really good for me. I had recently gotten a series 2 apple watch so I decided to check my heart rate. It was 138! I thought "Ok, I just need to rest." After an hour of doing nothing, my heart rate was still elevated and I was still exhausted. My husband came to pick me up from work and took me to the Emergency Department at a local hospital. They said it was dehydration. They gave me IV fluids. My heart rate dropped to normal for me, I went home and planned to go to work in the morning.

When I woke up the next day I didn't feel better. I thought I probably just needed a day of rest. So, I stayed home and watched TV.

The next day was the same. That was unacceptable. I went to my primary doctor hoping to get a pill or something that would reduce my heart rate and give me some energy so I could return to work. She said that I could not return to work and that she wanted me to follow up with a cardiologist. I called the cardiologist that I was referred to by the hospital. They wanted me to wear a 30 day heart monitor and then follow up with a stress test and a visit to the cardiologist on February 27th. February 27th! That is a long time to be off work. My primary doctor put me on short term disability until February 17th. I hoped that would be enough time.

I got my heart monitor on January 23rd.

I ended up back in the Emergency Department on Saturday, January 28th. I was feeling really bad. They said I had Lactic Acidosis. They admitted me, took me off of my meds and gave me IV fluids and antibiotics. I had a migraine the whole time I was there but my heart rate went down so low I thought I was dying. They told me that a heart rate of 78 is actually normal. I said I wasn't normal and they disagreed. They put me back on my medications Monday morning and discharged me. I did feel better. I was still tired but better.

I saw my primary doctor the next day to talk to her about it. She still didn't have any answers but added a diabetes medication and did a bunch of blood tests.

On Wednesday the endocrinologists office the hospital had referred me to called to say they had a cancellation and asked if I would like to come in on Thursday, February 2nd.

I took the appointment and saw a nurse practitioner. After talking she took me off of Metformin and Jardiance because they can cause complications that I was already having. She kept my glyburide at 5 mg a day and asked me to check my glucose at least 3 times a day. I was so frustrated. I wanted to get better and go back to work. I was still so tired.

On Friday afternoon, February 3rd, I took my beautiful kitty, Cleo, to the vet so she could go to heaven. It was just too much for me. She was sick, I was sick. I couldn't take care of her. We were together a long time. I miss her.

While we were at the vet my doctor's office called and said that my lactic acid was still high so she wanted me to go to the Emergency Department again. We went to a different one that was closer to home. I had done some research and had learned that Metformin can cause Lactic Acidosis. 

 They gave me IV fluids and I thought that was the end of it. Maybe I would be able to go back to work on Monday. My heart rate was normal again. I was still tired but I probably just needed rest. I was so tired that night when I got home that I accidentally took my Metformin. I didn't realize it until the next morning. I was so frustrated!!! 

I rested waiting to feel better for several days with little improvement. The exhaustion improved but not enough to return to work. I submitted my first partial weeks glucose results and they told me to increase my glyburide to 5mg twice a day. 

The nurse that had discharged me from the hospital on January 30th had suggested acupuncture. I was ready to try it.  On Friday, February 10th I went in for my initial consultation and my first treatment. 

To be continued....

After Death

Before I get started on life after Marcus I have to share something else that happened. I have another beautiful son in law. His name is James. The night after the appendectomy, Wednesday, October 12, 2016, he broke his leg playing soccer. I am not an athlete. I don't know a lot about soccer. So, my first thought was "How do you break your leg playing soccer?" I guess he and a bigger guy kicked the ball at the same time. That's how you do it.

Monday, October 17th. After Marcus died. We were all in shock. I can't tell you really what everyone was doing. There was pizza that no one was eating. We were spread between the room with Marcus, the little room they gave me to cry and the waiting area. I was going between all 3 trying to be with everyone. After they told us he died Antar was upset with one of the doctors. I don't remember what he said I just remember that he was angry and he was telling the doctor all about it. The doctor was patient and kind. I'm sorry I can't remember their names. The two ladies that went with me when I first left the room to cry stayed with us, bringing warm blankets and beverages. They found a small room where 3 doctors, Edna & I went to call Cherie and Mike to tell them what happened. That was hard. Mike said they were on their way. The doctors told us that they wanted to do an autopsy to figure out what happened. Edna agreed. She said he was an organ donor. They said that because of the cancer his organs were not viable but that they may be able to use his eyes. Edna said that she wanted to see him.

We went back to the room where Marcus was. It was now basically empty. I have a picture of that moment when Edna laid down with him and cried on his chest but we decided that was too personal to share. There was crying but mostly just sitting. I went and told all the family that they could come in. Some came. Most didn't. I sat there with Edna while people came and went. I had a hard time sitting still so I came and went a lot too. Hannah sat with Edna. Brock stayed with Edna for a long time. The coroner came. He said that the autopsy was unnecessary so they weren't going to do it. He said Marcus died from the cancer. The man from the funeral home came. I know his name was Hyrum because we would see him almost every day that week. It felt like we stayed there a very long time. Edna wasn't going to leave before Marcus. They finally came and took the body. 

Until I went to sleep that night I was chanting mostly in my mind but occasionally aloud "But he was alive this morning." I felt like I got a thousand texts asking where Edna & I were going and what we were doing. We were in a haze. She didn't know and I didn't feel it was right to push. I wanted to wait until she knew what she wanted. Tony had arranged an air bnb for the family. Edna's options were open. At first she said that she didn't want to go home. It took a long time to get out of the room and down the elevator. Junior was there. I'm not sure if he was there the whole time but when we got downstairs he was there with his wife. Edna needed to sit. She said she was going to throw up. I was looking everywhere for an emesis basin. I thought it was ridiculous how difficult it was to find one in a hospital. She sat for a while and then she was ready to go. They sent me for the car. I thought it was strange that the sun was shining. How can the sun be shining when Marcus just died? Should the sky reflect the horror? Shouldn't there at least be rain? We spent the evening with Alex & Tony and their families at Alex & Molli's apartment. We went to the airport to greet Mike and Cherie. Then we went back to Edna's apartment and went to sleep. Edna, Esterlynn, Roscko(the dog), and I in a queen size bed. We slept. 

Tuesday, October 18th - Thursday, October 20, 2016. The one relief of this day was that I could no longer say, "But he was alive this morning." Honestly the next few days a little mashed together in my brain. We went to the funeral home several times. Planning the funeral took up a lot of our week. It was hard. The emotions were so heavy. Edna was having trouble making decisions. At one point we were alone together in the funeral home. She said that she didn't want his funeral to be like Amanda's. Amanda is my niece, Edna's cousin. She was killed in a car accident when she was 20 years old. I told her that I remember Amanda's funeral being beautiful. All of her friends wore pink bandanas and got up and talked about her. Edna said everyone was sad. After talking a little while I told her that I think the part she doesn't like is that it is a funeral. We are having a funeral because Marcus died. We can't get around that. 

When we were with people she was all smiles but when we were alone she would cry and talk to me. 

I had a goal. I was going to get Edna packed and moved and get Marcus' life insurance and plan the funeral all before Sunday so that I could go to work on Monday. Bah! I was delusional. 

We went to where Marcus worked to do the paperwork for the life insurance. We ended up in a conference room with all of the employees of the store talking about Marcus. It was nice. Mike & Cherie were there with us. Marcus's coworkers loved him. 

Throughout all of this I was texting my manager from work. I think it started because I had to let him know that I wouldn't be at work on Monday. Then he checked in with me every day. Several of my teammates from work texted me too. One night I was having trouble sleeping and my friend Phay texted me memes until I went to sleep. That was nice. 

I wanted to pack but there was so much to do. Every time we went on an errand we found 2 or 3 more errands that needed to be done. Through all of this more family and friends were arriving. Everyone was texting, calling, dropping off food, asking how they can help. It was overwhelming. I told people Edna doesn't need flowers. That would just be more to figure out what to do with. I said to give her money instead. Marcus was the one who worked. Edna had a 5 month old baby to care for. People would help even when I said no. It was like they needed to. There was so much food. We kept taking it to the air bnb where our family was staying.

We had dinner at the air bnb. Tony & Rachel worked hard to make sure that everyone had a place to sleep and food to eat while they were there. They even made a special salsa that followed my low fodmap diet. It was so good. Salsa is not easy to make without onions and garlic.

Antar went back to Arizona on Tuesday to get Kimberly & her family. It was really hard on James that his leg was broken and he wasn't able to do much to help. They all arrived on Wednesday. In that air bnb were all of my kids and their children when Edna & Esterlynn were there. I was just too wrapped up in everything that was going on to be able to enjoy it. Everyone was emotional because we all loved Marcus. 

Wednesday evening we had cake and sang Happy Birthday because Gabby turned 3. 

Thursday, October 21, 2016 On this day something I had been dreading happened but it turned out to be the highlight of the week. Edna and Marcus had a friend named Jake that they went to college with. We went that night to pick him up from the airport. I really thought he was going to get in the way. Edna wanted him to sleep on the couch in the apartment where she and I were staying. It turned out that I was so glad that he was there. I told him that if I could afford it, I would pay him to be my personal assistant and just be there all the time waiting for me to tell him what I needed. That is what he did that weekend. He carried things, he told jokes, we had fun conversations, whenever I needed something I told him. He didn't question me, he just did what I asked. I guess I helped him too. He said that when he felt like he was fighting off tears I would say something funny and he would laugh instead. Also, he helped Edna. The night he arrived I went to bed and he and Edna stayed up talking until early in the morning. He was the first person to make her genuinely laugh. I've noticed something about college buddies. It's like they share a bond that those of us that weren't there aren't a part of. Marcus was a part of that. 

Friday, October 22, 2016 The night before Marcus siblings arrived. Chris and Carlene came to the air bnb so we got to meet them. My brother, Jack arrived. I can't remember when my nephew Jackson arrived but he was around. My friend and my children's godmother, Ann, arrived. Jack got a hotel room and Antar went and stayed with him so they could get some rest. Mike & Cherie had been in a hotel since they arrived. They needed space which was understandable. Still, they were with Edna most of the time. Edna & I went to lunch with Marcus' family at a restaurant that belonged to some of Edna's friends.

My parents arrived with my Aunt Kandy. My dad did an amazing thing. He offered to pay for everyone to go to eat. We got a private room at Denny's. All of the people from Edna's side of the family plus Jake & Ann were there. There were about 25 of us. It was nice. Edna rode to and from with my brother, Jack. He lost his wife to cancer so he understands her in a way that most of us can't. Jake and I rode with Ann. That was nice. I really miss my friends from Minnesota. 

Saturday, October 23, 2016 The funeral ended up not being until 2pm in the afternoon which was good. Edna went shopping in the morning with Kimberly and Rachel. They got some cute stuff. I wasn't up to it. I don't really remember what I did that morning. The viewing was at 2. Marcus was cremated. He was put into 3 John Deere canisters. On for Cherie, one for Edna and the littlest one for Esterlynn. Edna gave the leftover ashes(he was a big guy) to Marcus' childhood friend, Tyler. Someone had taken the time to arrange pictures on a table with flowers and the the largest canister. We sat in the front of the room for an hour while so many people came to cry, give a hug and express condolences. After about 3 hugs Edna said, I'm not hugging anymore. I'm too tired. We met more of Marcus' family. Antar led a family prayer and then we went into the chapel for the service. It was nice, about an hour. There were no hymns. We did have an opening and closing prayer. Mike & Candace(Marcus' sister) started the life sketch, then Tyler, then Brock, then Edna. After that anyone that wanted to got up and shared what they needed to say. Tony, James & Hannah sang a musical number. I sang the first verse of Amazing Grace and the chorus of Carry On. Edna was doing great. Or appeared to be. After the service she told me "I need to get to the bathroom". Everyone wanted to be with her. I got a little idea of what it is like to fight off the paparazzi. After going to the bathroom she said that she was so cold. I left her on a couch and went to get her a coat. She couldn't go into the area where the food was because it made her nauseous. She didn't see the slide show that Tony made or the nice arrangement of all the flowers and pictures in that room. Jackson came to the couch and played some music for her. A few people gathered around her. Eventually she said that she needed to go. It was about 5pm. I took her home. I had a bad feeling. She didn't look right. The baby was so fussy. Her best friend Emma came over. I called the nurse line for our insurance. That was frustrating. After getting off the phone I said, "I think you need to go to the emergency room. I just wanted a second opinion." Emma said, "I think you are right." That is all I needed. We left the baby with Emma and took Edna to the ER. I let Antar know and I texted everyone I could think of that wanted to know. Somehow I missed Jackson & Hannah. I am sorry for that. We were back in the same hospital where Marcus had died. Jake stayed in the waiting room. Jack and Antar came. Cherie & Mike went and got the baby. Edna wanted her baby so Cherie & Mike came and brought Esterlynn for a little while. Ann arrived and sat with us for a while. It was nice to spend time with her. We talked a lot. Edna was severely dehydrated, had a migraine and bronchitis. They gave her 3 bags of iv fluids and a migraine cocktail. Eventually we went home and went to bed. Jake and Antar were there the entire time.

Sunday, October 24, 2016 I told Edna we needed a day of rest. She was still tired. So many people came over I don't think I can tell you who they all are. Antar took Kimberly and her family home to Utah. Tony took his family home to California. Marcus' family came to visit. Alex, Molli & Rubi came over and stayed for a while. Friends came to visit. Thankfully we had all that food people had been bringing. I told everyone to help themselves. We had enough to feed everyone. Eventually everyone went home. We had a quiet evening. Then we had to take Jake to the airport. That was sad. My little buddy was leaving and we hadn't even really started packing. I really didn't want him to go. But he had to go back to work. Life didn't pause because I needed it to.

Marcus

I have a beautiful son in law. His name is Marcus. My daughter, Edna met him in college in 2011. They got married in 2013. They had a baby in May of this year. 

On Wednesday, October 12th of this year Edna called me and told me that Marcus had gone to the doctor and the doctor said that he needed an appendectomy. I guess he had had a stomach ache for a couple of weeks but coworkers' kids had had viruses so he figured it was no big deal. He had developed a fever and was finally convinced to take a little time off work to see a doctor. He went in to surgery at 1pm. Edna was in constant contact with me. She let me know that the doctor had come in and said that he saw stuff (okay this is not an exact quote) on Marcus' internal organs that concerned him. He did a biopsy to see if it was Lymphoma. Edna was understandably upset. I was upset. I talked to my coworkers. I went on Google. Apparently there are lots of kinds of Lymphoma so I was trying not to be upset. Edna rarely left Marcus' side but on one of the times that she did that night the doctor came in and talked to him. Edna missed it. Marcus said the doctor didn't say anything about Lymphoma. Edna was understandably frustrated. We didn't know when the test results would come back. I knew she didn't make up the word Lymphoma while she was waiting for her husband in to come out of an appendectomy. The next morning she was there when the doctor came in. They discussed the Lymphoma. She didn't make it up. The doctor said it could take a week to get the results and to just assume it is negative unless they hear otherwise. So, Marcus went home to chillax in his bed, watch TV and recover. 

Friday, October 14th, 2016. I had just gotten on the train to go home from work when I got a group text from Edna. She said that Marcus had lymphoma. It starts with a B. They will see the specialist on Monday morning to start treatment. That is when the freaking out began. We all react differently. Through further discussion she told us it was Burkitt Lymphoma. My son, Alex is in nursing school and his reaction was denial. He said, No! Edna, it is not Burkitt. That is really bad. Again, I was thinking, Edna is not going to just make this stuff up. My reaction was that I wanted Marcus in Salt Lake at the Huntsman Cancer Institute NOW! But Edna and Marcus needed me to just calm down and let them rest. That group text kept going for over a week. It was Edna, myself, her dad and her 3 siblings. We all love Marcus. Alex and Molli(his wife, my daughter in law) went to see Edna and Marcus. They only live 30 minutes away. They took Esterlynn for the night so that they could deal with the shock.

Saturday, October 15th, 2016. My niece, Hannah, went to Rexburg to be with Edna and Marcus and help them through the weekend. We all spend the day on the internet trying to figure out what to expect and how to help. That night Edna lets me know that they are taking Marcus to the emergency room. He is not doing very well. They admit him. 

Sunday, October 16, 2016. I wake up frantic about Marcus. I call Edna that morning and tell her, I want you to put Marcus in the car and take him to the Huntsman Cancer Institute NOW! She says ok. She will talk to Marcus and the nurses and get it done. Antar(my husband, her dad) gets in touch with a friend who is a doctor in Salt Lake. He tells him that it is better to wait until Monday. The Huntsman doesn't admit on Sundays. I watch the whole first season of American Horror Story to take my mind off of what is going on. I worry about Edna & Marcus and all that they have in store. I want them in Utah so that I can go see them every day after work until Marcus gets better and can go home. As I get into bed at 9:30 that night I get a call from Edna. In a crying voice she said, "Mom, I wasn't assertive enough. We can't move him. I need you now." So, Antar and I packed up our car and drove to Rexburg. 

Monday, October 17, 2016. 

Before I tell you about this day I want to tell you that I have PTSD. I'm not going to say why right now but the diagnoses is significant. Remember this is my recollection so you are going to read how each trauma of this day affected me personally. A lot of other people were affected deeply by this day. I am not competing with them. I am just feeling my feelings. Also, I am an empath. I have difficulty separating my own feelings from the feelings of those around me. I am often overcome by the feelings of others. I am sure that intensified what I felt on this day. 

We arrived at 3:30am. We had to wait outside the room for a moment. Edna came out and told us that she had told Marcus that we were there and he asked, "But where is my mom?" At that moment if I could have magically turned myself into Cherie I would have. But, I reminded myself that my baby needed me and that Cherie would be there as soon as she could. I walked in and saw Marcus. I wanted to give him a hug but I could see he didn't feel good. I decided I would wait until he felt better. It turned out that was the best I saw him that day. I wish some angel would have whispered in my ear "Hug him now!!!" For the next four hours we all did what we could to make him comfortable as he dozed on and off. He was so thirsty. He wasn't allowed to drink because he was going into surgery. He had these pink spongy things he could dip in water and rub on his lips and gums. Antar, Edna & I went and had some breakfast in the cafeteria. 

Sometime around 7 or 8 the doctor comes in to talk to us. I did not go easy on him. I told him that I didn't mean to offend but I wanted the best care for my son in law and why should I be satisfied with some tiny hospital in small town Idaho. I wanted him moved to the Huntsman Cancer Institute in Salt Lake. He told me that he attended the University of Utah for medical school. He did his Residency at the Mayo Clinic in Rochester and that he was affiliated with the Huntsman Cancer Institute. He had even been faculty. He said that at the Huntsman there would be several people like Marcus and he wouldn't get the one on one attention. In Rexburg Marcus would have a dedicated nurse and he would be her only patient as he was going through chemo. And that Marcus was his only patient in the hospital that day. He had a calming affect that I believe he probably learned at Mayo. I felt much better after talking to him. 

At this point Marcus has not started chemo. He has had fluids, pain meds, nausea medication and platelets. He goes into surgery. They put in a port so that chemo can be started later. They did a bone marrow biopsy and they took a spinal fluid test and injected some chemo in the spinal fluid as a preventative measure. 

Marcus came back from surgery. I didn't think he looked so good. Edna & the nurse both said he looked better so I decided I was just crazy. He had developed a nose bleed in his procedure that wouldn't stop. An ENT was called in to cauterize it. When he came back to his room there was still blood oozing from his nose that we took turns wiping. He couldn't get comfortable. He was tossing and turning and he wanted to be left alone but we kept wiping his nose. He was still very thirsty. 

Antar, Hannah & Esterlynn had been there with us. They go to Edna's apartment now to rest and take a nap. 

The doctor finally came in to talk to us around 1pm. I had lots and lots of questions about the chemo and what was happening to Marcus. While we're talking Marcus is spitting up blood into a basin. They said that was because of the nose bleed. The doctor said that there was so much lymphoma in the bone marrow that he couldn't aspirate it. I didn't ask him how they got it out to test it. He said that Marcus had Leukemia. Burkitt Lymphoma Leukemia. 

Leukemia: All of a sudden I was a little girl in Phoenix. I was in my Grandma's hospital room. She was spitting up blood into a basin. She saw me and said, "Get her out of here!" I never saw her again.

The doctor had a way of explaining the chemo in a way that was hopeful. I was even thinking that Marcus could go back to work between treatments. I thought, "As soon as Cherie gets here I can go back to work." I was was sure Marcus would be fine. Then the doctor stands up and says, "We are going to take Marcus to ICU now." I had heard this was part of the process so I still wasn't alarmed yet. 

We get everything moved to ICU. They are concerned about his oxygen level. It seems like they are agitating him. They take off  the hose that blows oxygen in his nostrils and put on a face mask. He hates that. He wants it off. Edna takes on the job of holding the mask on his face while he thrashes around in the bed. They start giving him whole blood instead of just platelets. They still haven't started chemo yet. The doctor starts asking a bunch of questions that I can't answer. I facetime Cherie so she can talk to the doctor. She asks to see Marcus. I show him to her. She has to go so she can cry. I put up the side rail because he is pushing his backside off the bed and I know that Edna & I cannot pick 6'5" Marcus up off the floor. We are still joking with him. He is saying some really weird things. I notice that they are poking at Marcus' wrist. I ask, "Are you trying to do an arterial blood gas?" The doctor says yes. I used to be a phlebotomist and I try desperately to remember what that test is for. Somewhere in all this commotion the doctor changed. The oncologist went to his clinic and we had a doctor from internal medicine. I think that was before things got so crazy. A few minutes later I see the doctor talking to a nurse. She says, "That wasn't arterial blood." He says, "But we can still see what we need to know." Then he comes around the bed to me. I think it was because Edna was still busy keeping Marcus' oxygen mask on and maybe because of the look on his face as I was staring at him. He comes around the bed and with a kind face says, "Marcus has had a massive heart attack." I put my hand over my mouth to hold in the wants to come out. He says a bunch of other stuff that I can't process. Edna becomes part of the conversation. I say, "I'm sorry. I'm in shock. I need you to repeat everything you just said." He tells me that they are going to intubate Marcus and put him on life support. I can't even look at Edna. Oh my gosh! I am falling apart and my baby is being strong. I need to get out of here because I am doing this all wrong. I barely escape the room before the horrible sounds start coming out of me. There are tears pouring down my cheeks. There are 2 women escorting me. They find me a room where I can cry. Soon, Edna is sitting there beside me. She is crying too. I hold her and tell her I am so sorry. Everything happens so fast after that. Someone comes in and tells us they are doing CPR. Why? I haven't even processed the heart attack yet! He's 23! this is wrong!!! THIS IS WRONG!!!

Someone comes to get Edna. I am not letting her out of my sight now. We go back to ICU. We stand in the doorway and watch them do CPR. There are at least 20 people in the room. They trade off chest compressions. Edna kneels on the floor and holds his hand. I kneel on the floor and hug her from behind. Someone takes us back to our little room to cry. 

about 15 minutes later someone comes to tell us that Marcus has died. 

By then Antar(my husband), Alex(my son), Hannah(my niece), Tony(my son), Rachel(my daughter in law), Liam(my grandson), Margot(my granddaughter) and Finley(my grandson) are there. This is the first time I meet Finley. Molli(my daughter in law), Rubi(my granddaughter) and Esterlynn(my granddaughter) arrive. I'm not sure when. Brock and Junior (Marcus' coworkers) arrive. We all cry. We are all in shock.

I left out most of the phone calls and text messages. This was difficult to write. I will write about the aftermath later. It is hard to believe that the world kept spinning. It feels like it stopped for at least half an hour.