I have only seen Julie suffer like that one other time since I have known her. It was a few days after the lung transplant in 2011. They had to keep the air moving in her lungs and she had to keep her new lungs clear of mucus that was partly from the surgical procedure and partly from laying down for over 24 hours. They would have her nebulize an irritant called hypertonic saline to cause her to cough. You can only imagine after being opened up across her chest, the pain of coughing was excruciating. I remember her crying through that process as she bore it head on. She knew she had to do it, so there was no question. This experience was similar for me since she was not only nauseous, but the pain in her head was most likely caused by a spinal leak. The fluid around her brain had leaked out of the perforation from a few days prior into the tissue. When the fluid drains they can typically do a blood patch. That wasn't an option since her platelets were so low and she was on a blood thinner at the time. She had to just let it pass. Once they admitted her, they were able to give her Ofirmev (IV acetaminophen) which was very effective at easing the head ache pain and some hardcore anti nausea to curb the inclination to vomit.
That hospital stay lasted for 3 days and she was home on Sunday the 8th. We were able to enjoy being with her for the first part of that week. I had to fly out of town again Monday so during the time I was home, I was caring for her here and at the hospital. The next stay was the M in CODOX M IVAC, her drug regimen. This is the one that brings the mouth sores. She went in on Friday the 13th not knowing they were admitting her for the next part of Round 1. Julie sent me a text that afternoon that pretty much sums up how she has handled being away from her kids: "When do you plan on coming up? Do you think Charles needs you more than me?..." She is always putting her children first. Even in the midst of the most suffering. I made it up there that evening. She was getting fed up with the strands of hair coming out. She had kept it in a bun since Wednesday and started to take the bun out. That bun was her last chance at glory. It was hanging on and as she took it out the hair came out in chunks. She had gotten her head around losing her hair since she had a few weeks to think about it. Once it was constantly on her pillow, she was fed up. I told her I would shave her and she could shave me. "Are you serious?" "Of course I am. How can I expect you to go through that part alone." We shaved and I couldn't believe how cute she looked. Once she brought her head up from me shaving her, all I saw was her face. Her head is tiny like the rest of her...or her hair was just thick. I call her beetlejuice sometimes. We asked a girl working to film it for us so I could share it with the boys later.
It was during this stay that I believe the psychological weight of the suffering Julie was undergoing, started to take it's toll. She was trying so hard to think about the blessings she had been given instead of the hard times that were present. She was starting to really miss just holding her boys without reservation of getting sick. She was very emotional that Saturday night talking to me about the boys and how grateful she was to be a mom to them. I assured her that what they are experiencing right now is a spiritual insurance policy preparing them for their life ahead. They see her courage, faith, and perseverance and they will never forget that. She told me that bringing them to earth was "what I knew I had to do to give them life." At the end of the night of back and forth about everything she was so grateful for, she sent me these texts: "I cannot turn off the water works. I'll just pray. Do you think it's the Chemo?" I said, "You have taken on a lot. Crying is ok sometimes." Julie replied, "Maybe it's all coming out at once. I hope I'm done after tonight bc crying just makes you puffy and not get enough sleep. It does make you feel a lot though. I love to feel."
The following Wednesday the 18th Julie was starting to get mouth sores from her Methotrexate. "My mouth sores hurt so bad I can't even swallow my water. I have them in my mouth and my throat. Feels like a sore throat." Just one week prior, she was saying how so far Chemo wasn't too bad and that other than the bout with Finkle and Einhorn (Spinal Tap) she was feeling confident. Her stay this time was 6 days and she came home Thursday the 19th. Luckily as miserable as it was to take her pills with apple sauce, her mouth began to heal that Saturday.
Sunday night the 23rd she began to feel fatigued. It took so much to do so little. She was feeling stressed since I was leaving the next day to go to Irvine for work. I had my mom come over to help her Monday night and she was able to drop the boys at a neighbors while she went to the hospital to have her blood taken earlier that day. They told her they were going to admit her the next day for the final regimen of the first round, IVAC. She had to organize the schedule for the kids and it was somewhat overwhelming. Luckily we have had an incredible neighborhood, friends, and family step up every time we need the help. I have coordinated this up to that point for my travel, regular work stuff at home, and school every other weekend. The outpouring of support really overwhelmed Julie when she saw it first hand. After I came home I was able to visit her on Thursday the 12th. I remember her just crying from the support from everyone. She couldn't believe it. On the surface you might read this and say to yourself, 'of course people will help. You should believe it. ' People come out of the woodwork to offer, but this has been a long process, and actually calling people up and asking them comes with some apprehension. We know people have many things to do, and as willing as people are, it adds stress to their lives. Having a chronic illness, you have to bear that fact your whole life. The last thing you want is to put someone out,...again. When they are so willing and so available, I think the gratitude we feel is just overwhelming to us. The apprehension of asking is washed away....so thank you very much.
As with the first two regimens of round 1, the actual chemo wasn't too bad. Although having scheduled everything, this hospital stay she worried like any mother would. She texted me about homework, Charles medicine, the laundry, people being late for the next person to take over; everything that she wanted to have control over, but had to give up. She was calling every person that was coming to help and walking them through everything. If I learned anything the first few hospital stays, it's that most if not everything goes just fine, with little collateral damage. She started to feel emotional towards the middle of this stay again and they decided to put her on an anti depressant. She took it for a few days but quickly came off. She would feel drowsy, and it would relax her, but she would still have anxiety about the same issues and couldn't sleep. We know it takes a few weeks of these meds to have their best effect. However, it was irritating enough that she said she'd rather feel, then not. She has been better ever since.
That Friday I decided to take my kids on a bike ride across the Bonneville shoreline trail to visit their mother at the hospital. We left after dinner and it was a warm night. We had to haul up a hill with their bikes and the jogger. It took some encouragement, but once we were at elevation, they were loving it. They kept talking about how we were taller than all the buildings. They rode their little hearts out. At one point riding up a hill I told them we may need to go back since it was getting late. They started to pedal harder; they wanted to surprise mom. We finally made the 3 mile ride there around 7:15. Julie was surprised and elated. It was really fun to do. But I had to go back...and it was getting dark. I had thoughts of riding through research park back to Hogle Zoo where we started, but remembered how there are few sidewalks on those streets. I figured it would be better to go it in the dark on the trail. The boys started to whine at about bedtime 8:00. We still had 2 miles to go back. They would push and then stop and say, "I wish I was in my bed." I asked them if they saw any kids on the trail that night. "No." That gave them some pride and they pushed on. Ultimately the melt down arrived. We were getting close to emigration and it was dark. I knew we would be just fine, but they were now cold, tired and ticked. Some might say this was an epic parent fail...as one bystander called it, I say it's a man maker. The next day they just talked about how fun the trail was and how they were the only kids up there. (I recognize there's probably a reason for that.) They did say they wanted a billion layers to wear next time we went though.
On Friday she went in for platelets and they admitted her. She had no clotting ability, used all her white cells, and was fevering. She was becoming so weak that she seldom answered my texts. She was hoping to come home for Easter since she spent Thursday afternoon planning and shopping for the boys baskets. Over the weekend, she got worse before she got better. They gave her blood, multiple times, platelets to help her clot, but the white blood cells have to be made on their own. They took a culture when she was admitted, and on Sunday we found out she has RSV. The respiratory virus that typically affects children, also affects highly immune suppressed patients such as chemo patients. They have to nebulize a treatment over 2.5 hours in a clear tent that makes her look like bubble boy. The drug is called Ribavirin. We call the treatment Bubble Boy Robocop. When I saw her Sunday she was a little better, but still limited on what she would say to me. She didn't have the energy to be irritated with little nuances at the hospital. She was on 1 liter of oxygen. That said, after having fevers that were not very treatable for 3 days, getting the news of RSV was a piece of relief. We knew what was causing the problem. She now had to go through Bubble Boy Robocop 3 times a day to help her body recover.
Monday night I went to see her and her breathing was even more labored. She was now all the way up to 6 liters of oxygen. I haven't seen her breathe like that since pre transplant. She didn't have much energy to talk, but it was just nice to be with her. She had started to make her own white blood cells. Today her WBC was even higher. With that, comes inflammation caused by the virus. This is likely what is causing her labored breathing. She went through the weekend worrying about rejecting her lungs and wondering why she was fevering. Her pulmonologist assured her this was not the issue. Her blood work didn't show it and her chest x-rays confirmed it wasn't rejection. Now you can see why the news that it was RSV was so welcome.
Since most of my conversations these days feel like a wet blanket, here is the silver lining:
- Julie is improving each day and it appears we have rounded the corner on this challenge.
- Julie did Round 1 in half the time they told us it would take.
- Her oncologist says that despite her current state, she is taking this very aggressive regimen very well compared to other patients.
- The complications from the immune suppression of the chemo is routine.
- Julie is still making hilarious comments: "What do you think is in your nurses fanny pack Julie?" "Four sets of balls"
- Huntsman staff is taking incredible care of her.
- We are half way done with treatments.