The weekend of April 13th, we had a reunion from all of the retreats over the years. 27 of us all descended to Lake Norman, in three separate houses, for a weekend of fun, laughs, crafts, and fellowship.
I was most excited to be reunited with my buddy Mai from my retreat. She lives in Florida and even though we haven't seen each other in person since October of 2021, Mai has been a life line for me over the last year. Mai is also a believer and having another sister in Christ to pray for me, support me, and encourage me is such a blessing. Mai has had a very challenging last year as well with her health and she is able to understand my journey in a way not many can.
The following Monday was a chemo day. Wil had prayed that morning that there would be no surprises. God answered that prayer with a resounding NO.
It started with my labs. My neutrophil count was low. These are your mature white blood cells that fight infection. So then I'm crying in the exam room, waiting for Dr. Skinner to come in, because I assume she will hold my chemo to let these counts come up. It sounds funny but I want my poison! We plan our whole lives around the chemo schedule and I didn't want to have to wait.
Skinner comes in and eases our fears and lets me know that I can still have treatment, but I will need to get a Neulasta shot. This shot makes your bone marrow go into overdrive to produce more white blood cells. The downside to this shot is you get bad bone pain because of it. We are also teetering a fine line of treating the cancer and the neuropathy I've been having.
Skinner let us know that at some point, we may have to look at other treatment options. She is always good about discussing these things in advance so we are never blindsided.
Wil and I go into the infusion room feeling good and ready for my 13th infusion of Elahere. I get my IV Benadryl and sleep through most of the infusion. Near the end, I go to the bathroom and I start noticing I'm having a barking like cough. The infusion ends while I'm washing my hands and I walk back to my chair. I tell Wil about the cough and he wants to get the nurse. And of course, I don't want to be a bother and I tell him I'm fine.
Well I was most certainly not fine. After a few minutes, since our nurse was with a patient, I tell Wil to grab Cody, another chemo nurse, who I could see at the nurses' station. He comes right over and at this point, my chest isn't feeling right. Cody pulls the emergency cord which brings all the nurses and the NP running to my room.
I keep having the barking cough, my chest feels like I have an elephant sitting on it, it feels like someone is strangling my neck, and I'm having a hard time breathing. My voice even changed and was lower. By the end, I was also having severe nausea- to the point I thought I was going to puke.
There is a flurry of activity- putting me on oxygen, getting my vitals, pushing meds- all being directed by Hope, the NP who we grew to know during my Carbo desenstivation days. When I use to have breakthrough reaction with Carbo, the IV meds made the symptoms go away quickly.
That was not the case this time. My vital signs were stable (heart rate, blood pressure, and oxygen level) but I was still having throat tightness, chest pain, and the cough- just not as severe. Dr. Skinner came to see me too at one point.
They decided they needed to call the Rapid Response Team. This consists of an ICU nurse and respiratory therapist.
After doing an assessment and getting report from the nurses, it was decided that I needed to be transported to the emergency room. My cancer center is attached to the main hospital, so I was loaded on a stretcher and carted through back hallways to the ER.
Wil was the calm in the storm the whole time for me. I call him my manager of chaos and he is always calm and focused during times of absolute mayhem. I knew I was being prayed for which brings me peace and comfort when it was extremely scary.
In the ER, I received a nebulizer treatment and more IV meds- mostly to control my nausea. I felt tons better after receiving the breathing treatmennt, not all the way back to normal but much improved.
The ER doctor told us that there is a chance to have a rebound reaction 6-8 hours after the initial reaction. They had special beds assigned for these cases to be monitored in the ER. She gave me the option of staying overnight there or going home with an EpiPen, promising I would come back if I started having any more symptoms.
Wil and I both agreed that we just wanted to go home. I had to do oral steriods (high doses) twice daily for five days. I only had to use the Albuterol inhaler the next day for a lingering barking cough. I had no rebound reaction but I now have an EpiPen whereever I go.
On Wednesday, we had to go back to the chemo room to get my neulasta shot. Of course, I was the talk to the town and everyone was checking in on me.
Recovery from chemo, the reaction, and neulasta made for a tough and longer than normal recovery. The bone pain lasted almost a full week but that means it is working.
Skinner called after doing research on the clinical trials of Elahere to dicuss our plans moving forward. We will do a dose reduction (already had to do this once because of severe neuropathy pain in December), premedicate with Dex (a high dose steroid) the day before, possibly add more IV steroids, and run the infusion at a slower rate. The chemo room will have nebulizer equipment and meds ready to go in case I have pulmonary symptoms. Skinner asked me to talk to Wil and pray about it (which I absolutely love that she said that) and we could discuss it more in person on May 6th. We decided to give it a try and keep on the Elahere since it has been working so well.
Wil and I both get asked a lot "How do you do it?" Or a question similar to that. The simple answer is that it isn't through our strength but the strength we receive from God.
I am reading a book that our pastor, David Beaty, wrote about learning from Robert Murray M'Cheyne. In one of M'Cheyne's letters to his church, he wrote:
"Do not be discouraged, dearly beloved, because God bears long with you- because He does not seem to answer your prayers. When the merchant sends his ships to distant shores, he does not expect them to come back richly laden in a single day. He has great patience... Perhaps your prayers will come back like the ships of the merchant- all the more heavy laden with blessings because of the delay. "
We cling to the hope and the assurance that God works all things together for good for those are called according to His purpose (Romans 8:28). We may never understand God's plan or purpose this side of heaven, but can trust in His promises.
Prayer Requests
1. The biggest one- please join us in praying for no allergic reaction during my infusion on May 6th. For protection, for effectiveness of the lower dose, and for peace during the infusion.
2. For the side effects of the steroids to be manageable. Usually causes lack of sleep and feeling like I'm on an emotional roller coaster.
3. Pray for wisdom and guidance for Dr. Skinner for our future treatment options and when to change.
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