"Dieing is NOT an Option!"

Another infusion here at NBMC. It’s 8:20 on Monday morning and Rianne already has had her blood drawn and also has a needle in her Port, dripping chemicals through it and into her body. We have another favorite Oncology Nurse, Melissa. She has been an inspiration for us, taking great care of Rianne as she administers the infusions, explains the side effects that she may endure and any additional information that she can provide us with.
Rianne had a rough weekend, starting with Friday. She endured her 2nd Intrathecal Injection on Thursday and responded well to it for the rest of the day, but took a turn on Friday and began to feel poorly. She spent Friday moving around the house and doing small tasks, but didn’t really feel well at all during the day. I power washed the deck as she rested. She spent Friday evening relaxing in front of the TV and drifted off to sleep around 10:00. I tucked her in around 10:15.
Saturday was also a rough day. Rianne woke around 9:00 with a headache and decided to return to bed. I worked again power washing the deck and checked on her frequently. She woke from her nap and rested on the couch, taking pain medication to fight her headache. I cooked her dinner and she ate well, but still didn’t feel any change. She retired for the evening shortly thereafter.
Sunday was troublesome for Rianne. She woke at 9:00 and I cooked her a light breakfast. Less than 30 minutes later she rushed to the bathroom and vomited. She was nauseated and told me that she still had a headache. I helped her climb back into bed and she immediately fell back to sleep. She didn’t want to move, so I left her where she was. Again I worked on the deck, checking her every 30 minutes. She slept until 4:00, climbed out of bed but was still nauseated. I tried to interest her in some lunch, but she refused it. She rested on the couch, remaining motionless as she watched a movie. I checked on her every 30 minutes, asking if she had an appetite yet, but it was nonexistent. At 7:00 I had enough of the deck for the weekend and went back inside. Rianne was eating watermelon and stated that she also ate some grapes and a banana. Around 9:00 she asked for more watermelon. I prepared it for her and she ate a good sized bowl of it. Nothing else was appetizing to her, as I tried to pawn off a protein bar on her but it was rejected. She went to bed around 10:00 and slept poorly.
When we woke at 5:00 this morning she said that she was worried that we wouldn’t make her appointment on time today, which caused her to sleep poorly as she woke several times during the night. She had absolutely no appetite this morning, had another headache and was very nauseated. In fact, she was so nauseated that she opted to insert a Compazine suppository versus take an anti-nausea medicine orally. My smart wife knows that you just can’t throw up a suppository!
Rianne also said she dreamed that she was dieing. She was trying to hold on, gasping for air and trying to focus. She remembered that she wondered if she would miss her family and her soul mate. Were there things that she wanted to do and say? Had she lived a good life? Would her loved ones be alright without her? She remembers her Grandson, Kacen saying to her, “Gramma, its okay!” I woke and heard her sniffling and talking in her sleep, saying that she was going to die. I slapped her in the face 5 or 6 times to wake her. When she finally looked at me I yelled, “Dieing is NOT an option!”
Actually, I didn’t wake her and slap her – but it sounded heroic, didn’t it?! She told me to keep it in the Blog so that you would laugh like she did when I read it to her! We’re also checking to see if you’re reading carefully or not!
But dieing is NOT an option. Rianne’s dream felt very real to her, but I refuse to allow her to believe it. Rianne has come a very long way and she WILL win this fight. It does, however involve a rough road ahead. The Intrathecal injections along with the Rituxan have proven to be a challenge for her. This weekend was proof of that. We aren’t sure if the Cytarabine caused issues for her or maybe the Methotrexate and Rituxin contributed to it. Either way, she felt poorly, which indicates a rough road ahead of her for the next three weeks. Following the Intrathecal Injections will be the Radiation Treatments - a long bridge we will cross when we arrive there.
If you talk to her and she knocks you over with her breath, never fear – it’s just the Cytarabine wreaking havoc. She and I have now implemented a “6 foot rule”, which is difficult to enforce when traveling in the van and when we sleep in the same bed! I could sleep in the doghouse, but don’t like to practice that option unless I’m in hot water with Rianne, which I currently am not!
It’s really tough to sit next to Rianne here in the Infusion Room, watching chemicals drip into the body of the love of my life. I feel so helpless and frustrated, knowing that I can only wait and allow the medicine to do what it must to improve her health. Right now she is lying in the recliner receiving chemotherapy and she is exhausted and absolutely miserable. Watching her struggle is gut-wrenching for me to witness, and seeing her in this condition rips at my emotions daily. I tend to bottle it all up inside of me until a card or a phone call or a visit from a friend opens the door to briefly let it out. I sometimes feel like a cancer zombie, telling people that I’m doing fine when really I am not. Rianne’s lymphoma scares the sawdust right out of me and it will continue to do so until her Oncologist tells us that she is “Cancer Free”. The support we have received from everyone has been absolutely amazing, but fear has a way of choking its way inside. “A day at a time” we keep saying, yet neither of us are used to living this way.
Update (written at 9:00 PM) : At 10:00am I was asked to leave the Infusion Room to allow the patients better privacy. Shortly after I left, Rianne’s condition began to improve. She was given Zofran, an anti-nausea medication, which settled her down. At 11:30 she walked out of the room with a smile on her face, which relieved my concern for her feeling so poorly. She was also told that the Cytarabine is the stronger of thr two Intrathecal Drugs, which explains her rough weekend.
Our next appointment was at noon at Bay Area Hospital for her Intrathecal Injection of Methotrexate. She did well during it and recovered nicely. We left the hospital, grabbed some lunch and blasted down the highway for home. Her “Cancer Roller Coaster” ride went from rock bottom back to a high point in a matter of only a few hours.
This afternoon and evening have been a complete turnaround for her compared to how she was feeling this weekend. Her appetite has returned and she physically feels an improvement.
Thanks again for all of your love and support, which has been phenomenal. You have helped us every step of the way and we have all of you to thank for that!

The video shows the infusion needle being inserted into Rianne's Port. Looks like a huge yellow mosquito moving in slow motion! This type of needle is inserted into her Port each time she receives chemo and also for blood draws.