Ring the Bell or don't Ring the Bell

Before I get into the gritty of the appointments today along with what is to come, I have some randomness to share.

There a few random things I have noticed during the last year visiting doctors and hospitals. One of those things is valet parking. It is your friend if you are going to be there a while, or at a time when you are likely to NOT find a parking spot. I valet on chemo days. I am there a while and may not have the energy to walk to my car when I am finished. The valet parking is free. When I go in for blood work or doctor appointments (they are generally back to back- for now), it is usually around lunch time, so I can easily find a parking spot. It is a little tougher on disconnect day, but I don't want to valet for a 15 minute appointment.

Another thing that I have come to have a love/hate relationship with is MyChart. Everything is there and I can check in and pay before my appointment. My experience has been that I don't need to actually make appointments. They all just show up in MyChart. Today I actually had to stop and make an appointment. I did not know where to got to do that. 

Finally, almost all of the doors that I use have a little box that you wave your hand in front of and it opens. I love this feature! Who wants to touch germy door handles...especially as a cancer patient. These things are on all the bathroom doors, the doctor office doors, the infusion center doors, and in one of the parking garages. The other garage has the button you push. Can I just say that I have become accustomed to waving my hand  and waiting for a door to open. So much so that I have found myself doing the hand wave at church, the mall, and the grocery store...well, anywhere else there are doors. It is really funny when a small child waves back because they can't figure our why you are waving. Just know that if you see me waving at a door, I am ok! I am just having a brain fart. 

So, I woke up this morning with only 5 appointments in MyChart. I know it will change and already has, but if you remember  way back in January I had 25 appointments get scheduled in ONE day. There were later 10 more added in addition to monthly oncology visits. So, at one point I had close to 40 future appointments scheduled. I was even handed a paper calendar at one point to help me keep up with them all. It was CRAZY!

Today, I had two of those 5 appointments. The first was the blood draw. I was sure I was going to need the shot, but hoping and praying that I would not. After they took my blood, I walked over and waved my hand to visit my oncologist. Y'all, I only have ONE round of chemo left!!!! We discussed my horrible neuropathy. She offered to up  the gabapentin, but I declined. It mostly helps with pain. I wish I had pain...actually, my feet do hurt horribly a few times a week, but at this time I would rather have the pain than more drugs. My neuropathy is still on the rise in terms of severity. The doctor said it can take a year for it to resolve...or know it is permanent. My feet literally tingled all night long. The balls of my feet and my toes are numb, but I still have feeling...I can't make that make sense. I get the pins and needles feeling quite often. One night the numbness traveled up my leg. It felt like I was wearing a compression sock...I wasn't. Thankfully, the feeling came back in my lower legs...mostly. My hand are the most bothersome. In the middle of the night they feel ok. Sometimes I get excited thinking today will be the day that they are good. However,  as soon as I touch something the feeling is there. What is this feeling...well, it is indescribable mostly. My finger tips feel like they are raw and on fire when I touch things. The longer my fingers are used, the worse it hurts/burns. I was eating chips and queso at my birthday dinner and after a few chips, it hurt to pick up chips. In that case, it felt like I had cuts or raw spots on my fingers and the salt was causing them to burn and feel like I was pulling the skin off. My hands don't have any cuts, this is just how it felt. Typing hurts and is at time difficult due to my fingers not doing all of the things. The longer I type, use my mouse, or use my phone, the more it burns. I wonder if I put some school glue on my hands to dry if it will keep my finger sensors from activating... Surely I am not the only person who put Elmer's glue on their hands growing up. If I am, please don't tell me. The other weird feeling I get it when I stretch my arms out. It feels like there are little shocks going all the way up my arms. It also pulsates as this happens. Many times my hands and arms feel like I am holding on to an electric fence...also, if you have never held on to an electric fence, don't tell me. 

Ok, on to the rest of the appointment. She asked if I was going to ring the bell on Wednesday when I get disconnected. I saw a family face time family members as their mom walked out and rang the bell. They were all so thrilled to be done with the treatment part of the journey. I would like to ring the bell, but I also don't want to jinx myself. We will see come Wednesday how I feel. I asked when I can expect my resting heart rate to return to normal. My normal is 50's to love 60's. I have been 70's and even 80's a times. This shouldn't take too long after the completion of treatment to start trending down. I have gotten the ok to go to the beach and lake. You may catch me in a kayak on wedding weekend! The appointment was pretty easy. OH...the bad part is that they recommend I keep my port for at least a year. It bothers me so much and I hate it. I will have to get it flushed regularly. The reason is because most recurrences happen with in the first 2 years...this is why I am hesitant to ring the bell.

What is next? I have chest and abdominal CT scans scheduled for August 29. Why so long??? I refuse to do any testing before the wedding. I know some of you may be shocked. I am inpatient and want to know all of the things and know them right away. However, I will not go into Samantha's big day worried about what the tests may say or bummed because they were bad. I will have to be patient and wait. It will be hard, so help me out with distractions. My follow up with the doctor to discuss the results and whatever else may need to be discussed will be September 5th. This patience thing will be really hard! If all goes well, there will be more scans a few months later. I will also have to schedule a colonoscopy for sometime in November. YUCK! 

My blood work today was good and I did not need the shot! Monday I will start my final round. Wednesday I will be disconnected from the pump for the last time. I am more than ready!

For this round please pray the neuropathy will start to lesson. Also pray for the fatigue and nausea to not be bad. We are 2 weeks away from the wedding and there is still so much to do! Also, if Sam and Anthony can come up with the all of the security deposits needed, they will be moving things into a house next week. Sound silly, but pray for provision for that money. They have some, but are about $2,000 short. I would gladly give it to them if I had it, but I don't. Actually, if I had the extra funds, I would have contributed a lot more to the wedding and they would have that money! Josh and Morganne and some friends will be driving in from California on the 10th/11th. You already know my mom heart will be worried until they walk in my door safely! 

So many prayers are needed during this time for my family and treatments. 

Thank you for going along on this journey with me.