Hi there, I am posting this just incase you don’t read my friend Melissa’s carebridge blog. I think many of you that are reading my blog, also read hers, but if you don’t, I am attaching her latest post. She is telling you about Cassandra’s last days. -
Here it is….
Hello prayer warriors, I know you are still out there. Thank you so much. Without your prayers and God’s mercy, I am weak.
I’ve struggled more than I can convey to you in the last 40 hours since Cassandra left earth. My loss… our loss is so big that sometimes it’s minute to minute. Other times, I find that an hour has come and gone without a tear.
I wish I could tell you that dying was easy for Cassandra. It was not. I thought her death would be the end of the journal. I wondered and asked advice from wise people. I asked, “Do you think I should tell them?” The response was unanimous. “Yes, people will want to know how the story ended.” Keep in mind, Cassandra’s death isn’t the end. Even today isn’t the end. The journal will wrap up after the memorial service in April. It’s almost as if I owe “you” the rest of the journey.
I rode with Cassandra in the back of the ambulette home to the apartment. I was worried about her being off the IV pain and nausea med for the transport. The EMT in the back of the ambulance was very kind. He asked Cassandra about what she did in the military. They had military service in common. He even asked what local radio station she listened to. She was too weak to answer, so I told him 103.7, Sophie. He radioed up to the driver asking for the station to be changed and for it to be piped into the back of the ambulette. We listened to Turn the car around followed by some some with the verse Banana in it.
Midway home, Cassandra said her neck hurt and asked me to rub it. I did as she asked. As soon as she guided my hand to the right side of her neck, I felt it. The monster. There was a huge corded bunch that ran the length of her neck. It was hard to control my anger. The monster. I felt that same bitterness welling up inside me as a year ago when my eyes saw the huge lymphoid mass on CT scan of her chest. At least the chest mass melted away with chemotherapy. The neck mass was the mutant. It was the resistant monster that just days ago made my girl tell me, “Mom, I don’t think I’m going to make it out of here”. (meaning the hospital) Wrong. Monster or not, your momma is getting you out of the damn hospital come hell or high water.
The days we had at home with Cassandra were so hard, but they were good. We were discharged with Hospice for support. I’d decided to continue the IV nutrition and antibiotics to keep any infections at bay until Jim’s parent’s could arrive in town.
It had been so long since I’d done that kind of bedside nursing, but I was determined to do whatever needed to be done to give her some quality time with us, Tucker kitten and Annie the dog. I thought I was going to have pumps to monitor/run the antibiotics, steroid injections, continuous pain and nausea medicine and the IV nutrition. There were only pumps for the pain, nausea and IV nutrition. The rest of the stuff was done manually by monitoring IV drip rates and gravity.
I know Alex told you Cassandra’s nose was bleeding, but what he didn’t tell you was that her urine tube was draining urine that was so bloody…. that every time we emptied the bag, it looked like all blood, no urine. After day two at home, I simply could not understand how she was still here. Car engines need oil, and so do our vital organs… they need blood. I envisioned all the vital organs seizing. Knowledge isn’t always a good thing. I still had faith, hope and love. Though I couldn’t comprehend HOW she was still alive, I didn’t care how, all that mattered was that each minute was a gift. As hard as every minute was, it was vital.
Delirium that was so prominent at the hospital, was nearly gone once we got to our apartment. it was as if God lifted the fog. It was such a joy to have those moments with our girl. After Alex and Jim carried CJ up to her room, they sat quietly with her while I rounded up stuff for a shower. They told me she talked about her worldly possessions. She shed a few tears and told them to share her stuff for she could take none of it to heaven.
I wish I’d realized it was her last shower, maybe I would have savored it more. All I remember is feeling so helpless. Getting her from the chair in her room to the shower next door was so much work. Imagine trying to hold someone upright while trying to move sideways into a tub. Her legs and brain weren’t on the same wavelength anymore. You could see she was trying to walk, but it ended up being more like a slow dance with me practically carrying her. She apologized. How humbling. My girl was apologizing that her body wasn’t doing what it was suppose to do. Knowing how much she hated the process of showering, we made it quick. She STILL somehow found the strength to insist that she help wash herself up.
We got back into her room and Grandma pulled clothes out of the closet like a fashion show while Cassandra picked what to wear. I KNOW she wanted to wear her skinny jeans…… but there was just no way. I didn’t think we’d find ANYTHING in her closet that would fit her. Thankfully, there was one pair of jeans that were bigger and she was agreeable to trying them. (Chris told me later they were jeans he had left in January)
Imagine having a urine tube feed all the way down your pant leg. She didn’t care, she wanted to wear jeans. She hadn’t wore street clothes since Christmas. So, it was a no brainer that we’d find a way to make it happen.
Once we were done dressing, it finally dawned on me that we still needed a way downstairs. The chair carry didn’t seem like such a good option for going downstairs and Alex had gone to run some errands. Thankfully, Amber and her friend Brandon showed up. Brandon is a Marine too. Cassandra simply said, “drag me”. It was like some code language. Brandon told me later he understood what she wanted, but that he wasn’t dragging her. Instead, he carried her on his back to the top of the stairs. From there, she said she’d go down each stair on her butt. Again, imagine doing that with a urine tube. She didn’t even flinch. At the bottom of the stairs, Brandon lifted her piggyback style to her wheelchair. From there, she was ready for the first daytime walk around the neighborhood.
All I could think of watching this was Cassandra telling me that during the Corporals course, she was the smallest Marine. Being the smallest, you had to prove you could carry any Marine out of danger. Of course, as you can imagine, they challenged her with carrying the heaviest person. She did it. My 140# girl hauled a 220# man out of “danger”.
This day she ate a few spoons of Crispex and Special K with berries. She felt full, but still wanted the pleasure of food on her tongue.
Nights and days blended. We had the hospital bed and supplies set up downstairs. Grandma stayed with CJ and I downstairs the first night, Jim stayed the second and third night and Alex the forth night. Staying the night with us meant listening and only half sleeping. I am a heavy sleeper and wear hearing aids. I was so afraid of missing her moving and her cracking her head open. Delirium was still present and much of the night was spent going for walks, sitting up in the rocking chair and maybe a tiny bit of sleep. I will tell you, without a doubt, every time Cassandra was about to do something, I was awakened. I know God stirred me.
So, maybe you are wondering WHY we had to fit a tattoo into Cassandra’s last days? She wanted a sibling tattoo. As unique as each of my children are, they had come full circle, recognizing as young adults that they loved one another, deeply. Cassandra felt she’d missed out on so much of the last several years of her brother’s lives, it was important to her that they know her deep love for them. Six or months ago, she started hounding me about getting a tattoo to symbolize this. I talked her out of it because when she went to transplant, there was no room to mess with the possibility of hepatitis or HIV – which, albeit a low risk these days with tattoos, was still a very real risk in a neutropenic patient. I appeased her with a simple statement. “Cassandra, if I ever feel you have less than 2 months to live, then I would agree that might be a ‘oh hell, go ahead’ opportunity to just do it.” Once she heard that she had a few months.. a few weeks… and finally a few days…. one of the first things she asked me was, “What about my tattoo?”
Alex tried to hook up with a tattoo artist 1/2 mile from the house. He thought everything was a “go” until an hour before we headed out with Cassandra for an appointment at 2230. He went early to make sure the design was ready. He came back to the apartment with such a look of hurt. The man had changed his mind. He didn’t want to give a tattoo to a dying girl and maybe speed up her death. Alex couldn’t explain enough that it was her dying wish. We felt helpless. We couldn’t get her back to NY to die at home…. so, getting her the sibling tattoo seemed like maybe the only way we could honor one of her wishes and now that wasn’t working either.
I looked at Cassandra’s dad. Surely if any one knew a local tattoo artist, it was Jim. Through Jim’s friend Hunter, Jim had formed a relationship with an artist in Oceanside. Though I didn’t relish the option of driving our girl 30 minutes in a car to get a tattoo…. I asked Jim to see if he could pull some strings. At midnight, Hunter called the artist. The guy cancelled an event and scheduled our three kids for tattoos the next day at 1600.
Even though it sounds easy, it wasn’t. We arrived at Hunter’s house by 1615, but he wasn’t done with the computerized graphic of the sketch. He worked on the sketch the whole 20 minute drive from his house to the artist. When we got to the shop, the artist was already working on another person. We’d have to wait our turn, and Hunter wasn’t ready anyway.
Cassandra and I waited in her dad’s car. The IV antibiotics were hanging on the clothes hook over the window in the backseat. The first of two oxygen tanks was nearly empty. Already I’d had to reprime the IV nutrition tubing line because in the move air had gotten in the line. Thankfully, there was no problems with the pain pump or the nausea pump.
Hunter wasn’t done with the sketch yet, and neither was the artist with the other client. Cassandra had dropped into a stupor. I recognized pauses in her breathing. I felt edgy. Had moving her sped things up? What was I thinking? How could this have been a good idea? Again, what was I thinking?!! It was another 24 hours before Jim’s parents were due to arrive.
The artist said it would be another 1.5 hours before Cassandra’s tattoo would be complete. Hunter was finishing the final details, but I didn’t know if we’d have enough oxygen to sit for the tattoo and for the ride home. We nudged Cassandra, asking if she wanted to go home… she said yes. Hunter felt responsible. He was the one holding us up. We packed up and readied to leave. Then, my girl woke up. Asking her again, “You want to head back to the apartment or stay here to get the tattoo, she responded defiantly, stay here.” Of course, we stayed.
Waiting outside the artist room, Cassandra was still determined that all three of them get the tattoos in the same location. It took a minute, but we convinced her that it would be okay for everyone to get the same tattoo… but by having them in different locations it would only add to the unique-ness of their individual personalities. Alex really wanted his sibling tattoo over his heart. Chris really wanted his in the upper back region at the base of the neck. Really quickly, I drew this comparison for her… Cassandra I said, “Alex wants his over his heart to symbolize his strong love for you and Chris wants his (beings it’s his first tattoo) in the same place YOU got your first tattoo”. Upon hearing this… she smiled and said it would be okay if everyone had the same tattoo, but in different locations. She chose the location of her tattoo. None of us swayed her, there was no need.
The oxygen held out…. our girl got her tattoo… and we left the boys with the Garmin to find their way back to us after they finished their tattoos.
Her metation became more blunted Sunday into Monday. I don’t believe the tattoo had any bearing on it. Cassandra was still alert at some times, but it was obvious she was fading. By morning, I’d already decided that it was time to withdraw as much support as possible. Meaning, anything that wasn’t intended for comfort needed to be stopped. It was hard, but never for a minute did I want to keep her trapped in this earthly body for a second longer than was necessary. Jim’s parents were arriving in the afternoon, but it didn’t seem soon enough. I kept a stopwatch in my head, telling her, Grandma and Grandpa Becker are coming in about 3 hours, hang in there honey.
Cassandra did what she could. We let her rest, but many people still came to see her off. The visitors were almost endless. I knew it was about the last day to allow “outsiders”, if you can even call them that. These outsiders weren’t necessarily blood or family, but they were people that supported our time in San Diego. To some degree, I knew it was important to let people we’d met over the last year to have some type of closure. It wasn’t for Cassandra’s closure. It was for our friends. Corey and his mom came one day, then he came back the next when his dad got into town. Missy and our friend, Mel came before we left the hospital and though I extended Missy the option of another visit, I knew in my heart it was too hard for her. She is still reeling from the loss of Mr. Joe Brown. I imagine it is hard to be the ‘survivor’. On one hand, there is survivor’s guilt, but on the other has got to be the question of, “am I next?”. Be thankful you don’t have that running in your mind everyday. We love you Missy, and want you, JJ, Corey, Treska and Betty to be survivors.
Monday into Tuesday seems a blur. There is so much to tell you about Tuesday that I should sign off for now, saving that for another writing marathon.
I ask that you continue to pray for those of us, Cassandra’s loved ones, left here on earth. Today I did something I never thought I’d have the strength to do. I have to tell this story as it happened for it to make sense to you. I pray for even more strength from my God for tomorrow. I know it will be harder on me than today. I want to be present in every moment.
Pray incessantly! Love Mel
