As you can imagine, a lot is going on over in the Coleman house. Not only am I preparing to fight cancer, but now I am also bunkering the family down to stay quarantined. We are doing our part and #socialdistancing with only leaving for essential appointments. I had my chemo education consultation over the phone, instead of in-person because of the pandemic.
The call started off ok, I had my laptop open with the handouts loaded from the email the Nurse Practitioner sent. She was talking so fast though, I couldn't write things down. Jack was only half listening with an ear bud, but also working on his laptop. The NP told me my chemo schedule changed due to the ongoing virus, then tried to explain all the medication I would need to take and how often and at that point the call went downhill.
I started to cry (again). I had to stop her. I need a minute to digest all of this information you are throwing at me. Things change and I understand that, but I need to wrap my brain around it all. These are unprecedented times and I know everyone needs some grace right now. I tried to let her know how confused I was and needed her to slow down. She did her best to help me, but the whole call was awkward. I really needed the handouts printed so I could write on them. And, I specifically asked during my time with Dr. Tan, for an alternative to one of the anti-nausea meds and that was never relayed to the NP. I really started getting frustrated. I calmed myself and did what I knew I had to do......take control. I let the NP know I needed all these documents printed and ready for me at my first infusion. Then I could look over them and ask questions while I am there.
I hate feeling like a nuisance or burden and at that moment, I felt like an inconvenience. The phone consultation is not a normalcy but due to limited time in office, this was the suggestion. I do not pretend to know more than any of my medical professional team members. I've never had cancer, nor have I ever been through this condition with a loved one, so this is all new to me. I really did not know much about cancer AT ALL.
After a few back and forth emails and calls between the doctor and NP, I got most of my questions answered. I am still waiting on some clarification on why my chemotherapy regiem was altered so heavily though.
Initially, I was told my chemo schedule would be 4 rounds of AC every 3 weeks and then Taxol/Carbo for 12 weekly rounds (total of 24 weeks). But, on the call it all changed. The doctor wanted to change up the schedule due to the corona virus. She implemented a new plan that would accelerate me through and allow for the immune boosting shot called Neulasta.
The new schedule is 4 AC rounds given bi-weekly and 4 dose dense rounds of Taxol/Carbo bi-weekly (total of 16 weeks). I think most people would be glad to be rushed through the chemo and end sooner.....well not me. Its not that I don't want to be over it all, I just want to ensure I am getting rid of the cancer (safely) and without reoccurrence. This new type of regime needs a closer watch on the internal organs. My heart, kidneys and liver will take the brunt of the work. This is even more terrifying. I wish I was giving more discussion on the pros/cons with the new schedule. I wasn't actually informed at all about the decision, instead the NP just causally added to the conversation.
After that call yesterday, I got another call today.....more changes. My port surgery is still on for Monday 3/23, but they have been trying to cancel it, because of Covid-19. This type of procedure is considered non-essential. To my doctor (and me) it is essential. my veins would not hold up over the course of treatment. However, my chemo infusion which is supposed to me Thursday 3/26 is not confirmed now. Can you believe it? They are trying to "fit me it" between the different locations, but I will not be able to see MY doctor. To say I am frustrated is an understatement. I just want to get my chemo started, so at this point that is my new goal. Again, unprecedented times calls for grace. So, as of right now, I am trying to go with the flow (not easy for this type A person).
If there is anyone out there reading this, please stay home and only do the essentials right now. I need to get chemo to save my life, but I must risk getting Covid-19 to do it.
Jesus, please, I am terrified, but I trust YOU. Please take what the enemy intended for evil and use it for your glory - Amen