Exhaustion and Emotions

I had a whole edited, nicely worded blog post ready and had just added a few pictures when the web browser I had open experienced an error and I lost the whole thing despite my blog website saying that the autosave feature was turned on the entire time I had been typing.  So, now you get a slightly more condensed and non-edited version instead.  Please excuse whatever grammar errors there may be now as it is late and though I am very determined to get a blog post up I am also needing to get to bed.

In some ways it is crazy to think that almost a month has passed since my last update here.  Then again, in other ways it seems like that last month has been a long one.  I guess that’s what cancer and the holidays does to you – makes time seem both fast and slow.  The last month has been a good one in many ways.  We spent Thanksgiving with Cliff’s family and it was wonderful.  It was especially fun seeing Elliott play with his cousins and seeing how cute they were with him.  It was 4 days of many delicious meals, dessert every day, fun conversations, playing games, and enjoying family time.  Elliott had his first real experience with snow and he loved it so much that he sobbed when we took him back inside.  We had to distract him with toys and a fruit snack before he cheered up again.  Cliff and I headed home that Sunday evening leaving Elliott behind to spend the week with his Sorensen grandparents while I was in the hospital for my 4th chemo week.

We always know we are leaving Elliott in care of the best – either my parents or Cliff’s parents – each time but with each cycle it gets harder and harder for all of us being apart from one another.  I cried for a while as began the drive home but between listening to Christmas music and reminding myself that I knew Elliott would have a great week with his grandparents I was able to cheer up for the most part.  The following day was too quiet for my liking with Elliott being gone and Cliff being at work but I was able to accomplish a few tasks that would have taken much longer if Elliott had been around to…help.  Shortly after Cliff got off from work we headed to my parents house for dinner and then Cliff headed right back home without me since I was getting admitted for chemo week the next day and my labs were scheduled bright and early.  My mom is my ride for each admittance day so with such an early start I opted to not make her spend an extra 45 minutes of driving that morning to collect me from our house only to drive back in the same general direction to get to the hospital. 

We arrived at the Huntsman just in time for my labs at 8am and met with Dr F, my oncologist, very shortly after.  First she told us that my tumor had shrunk a bit more from the previous CT scan – from almost 4 centimeters in measurement down to 2.5 centimeters – and that no new lesions had been seen.  That was definitely a great start to the appointment.  After that she asked if I had experienced any new reactions that she wasn’t already aware of.  My mom instantly mentioned my non-stop runny nose that I regularly tease her about because it seems to bother her more than it bothers me.  I had messaged the nurses about it but we hadn’t actually discussed it as of yet.  Turns out there is a fancy term for a consistent runny nose – rhinorrhea – and the hairs in your nose do indeed serve a purpose.  That purpose would be the natural slowing and or/ stopping of a runny nose.  So, since those disappear along with all the other hair on your body as a result of chemo an annoyingly consistent runny nose is a very common symptom.  I now use a nasal spray daily to help with that. 

Once again, the conversation turned to possible next steps once the 6h and final round of this chemo is complete.  Surgery could still be on the table if my tumor hasn’t completely gone away by then and she also mentioned immunotherapy as a further treatment option either in lieu of chemo for a time or in conjunction with some type of outpatient chemotherapy entirely dependent on how everything looks when the time comes.  If surgery is needed to remove the rest of my tumor I’m hoping that she’ll also say that a reversal of my ileostomy is possible at the same time.  I am definitely ready to ditch the ostomy bag as grateful as I am that they are an option since my intestines and colon definitely needed time to heal after my surgery back in July.  It was also determined that I would have a pic line placed in one of my arms since I was still without a port after it had gotten infected at the end of the previous chemo week. 

My mom and I spent a good while playing a couple of card games as we waited to hear when the pic line would be placed.  One of the nurses called me around shortly before noon saying a pic team would be in the clinic in the next 15 minutes to place a pic line.  I got back to the clinic right when the pic team did so the process got started right away. Normally it takes 20-30 minutes to place a pic line but as luck would have it things did not go smoothly this time.  They tried getting a line through 2 different veins in my right arm only to get so far in and be unable to proceed further.  One of them noticed that it was at almost the exact same spot that they couldn’t proceed in each vein.  After looking more closely at things via ultrasound they determined that my veins in that arm simply need more time to heal after having previously had a pic line there before after which I developed multiple blood clots in that arm.  They took a good long look at the veins in my left arm and before even trying to place a line there discovered that they were measuring too small to even attempt it.  So, they left the room to consult with Dr F and told me to stay in the room until either Dr F or her nurse came back to talk to me.

One of Dr F’s nurses came and found me around 1:30pm to let me know that they had requested that the Interventional Radiology take a look at things and determine which line they felt was best for me to receive chemo through.  By then a room was ready for me though in the new building versus the old building where I had been for the first 3 cycles.  Turns out that the unit where I usually do chemotherapy had a few people need to stay longer than originally planned.  So, being one who has very few reactions during chemo they chose to have me stay in a room in the hematology unit.  I definitely threw the nurses for a loop that first evening since they rarely deal with anything other than treatments for blood cancer but after a couple of phone calls to the nurses I’ve had multiple times during previous weeks they got it all figured out complete with a chart they drew on the whiteboard in my room.  They threatened the night nurses if it were to be erased before they came back in the morning.

With the pic line being a no go it was decided that an IJ line was the next best option.  I was in the radiology department for an hour and a half between instruction, prep, the placing of the line, and the required wait time after to make sure I wasn’t have any weird reaction to it.  An IJ line is a catheter system that is placed in a vein in the side of your neck.  It wasn’t painful at all other than the first couple of hours after the lidocaine wore off but it was very strange having something coming out of my neck all week.

Despite the few hiccups on admittance day the rest of the week went well.  It was a bit quieter than usual since Cliff had developed a cough right before I went in this time.  He usually spend the full day with me on Wednesday since that is an off day for him at work but having a cough made it necessary for him to stay away as I am extra perceptible to getting sick during chemo.  My parents came to visit on Thursday and kindly went to Café Rio to get me dinner since I had mentioned to my mom that despite the food being great at the Huntsman I was to the point of being sick of the options.  It was weird not having Elliott with them for their visit but it was still a wonderful time.  Friday was another very quiet day spent doing my usual choices of things – wandering the hospital, reading, doing puzzles on my tablet, listening to music, and watching a movie or tv show.  Cliff joined me first thing on Saturday morning and we spent most of the day in my room as I was exhausted that day.  We played a few card games, watched 2 Christmas movies,  enjoyed a long nap, and checked the clock way too many times in anticipation of me getting discharged late that night.  I was officially discharged at 10pm and after a detour to the store for some groceries we got home at 11:30pm.

Sunday was another quiet day with Elliott still being gone but it was a perfectly enjoyable one having a full day with just the two of us.  After the fact we realized it had been months since we have had an entire day with just the two of us that hasn’t been spent at the hospital.  My mother-in-law dropped Elliott off at noon the following day and it was a glorious reunion.  That week marked the longest amount of time that we have gone without seeing Elliott since he was born.  It appeared that they all had a good time together though so I was glad to hear that.  Having both sets of our parents live near enough that they can be the ones to care for Elliot when we are unable to is a huge blessing for sure.

Elliott is always a bit off the first 2 or 3 days home and this time was no different.  If anything, it was a bit harder this time which come to find out was at least partly due to a cold he had coming on.  He isn’t bad by any means but definitely more whiny, extra clingy, more prone to crying, and has some rough nights of sleep before getting back to being his usual happy, easy-going self.  That night it took him much longer than usual to fall asleep to begin with as any time I shifted at all he would sit up and cry for a few minutes while clinging to my shirt.  He eventually fell asleep and I was able to sneak into our bedroom.  That lasted for an hour and a half when Elliott came into our room crying.  I went back to his bed with him where it took him about a half an hour to fall asleep again.  I snuck out again only for him to come out crying not even 5 minutes later.  As soon as he found me he put his head into my legs and was almost hysterical. The poor kid was probably nervous that I was going to be leaving him yet again for days at a time.

I attempted going back to his room with him agin but that just made him cry more before he ran down the hallway to our bedroom and instantly got frustrated when there wasn’t a stool there for him to use to get onto our bed.  I quickly grabbed his favorite stuffies and his pillow then helped him onto our bed where he immediately snuggled right up to my side and laid down.  He almost immediately fell asleep that time but I didn’t as I was suddenly hit with a huge wave of mom guilt.  In that moment I felt like I was the worst mom in the world constantly leaving Elliott whether for chemo weeks or all the labs in-between.  I spent an hour silently crying during which time my mind decided to randomly think of the movie The Christmas Shoes and how I could not watch it this year because there was no way I could handle it on an emotional level.  I won’t ruin the movie for you if you haven’t seen it – although a sad one it is good – but, if you have seen the movie or heard the song I’m sure you can guess why I feel like I can’t handle watching it this year.  After thinking about that movie made me cry more than I already had been I decided it was far past time that I prayed so I could calm down and get back to sleep myself. 

I’ve had to get labs done more times this cycle than the previous ones in preparation for having a new port placed on the 18th.  My platelets needed to be to at least 50 in order to move forward with that hence the extra checks being needed.  On Wednesday this week they were at 37 so I asked people to pray that they would go up without the needed help of a blood infusion.  I had blood drawn again yesterday morning and they had gone up to not only 50 but 63.  So, thank you for praying for that specifically for me.  Getting an infusion wouldn’t have been the end of the world by any means but it would have meant leaving Elliott with someone else for 4-5 hours of time and I was definitely not wanting to have to do that since he will already be in the care of my in-laws again this next week as my 5th round starts on Tuesday. 

I've definitely been more tired this cycle which is entirely to be expected. Some days I feel like I haven't accomplished much because of being so tired but I’ve finally gotten to the point where I'm allowing myself more grace on that front. If Elliott has been played with and cared for, I have remembered to take all my medications, and we are all happy at the end of the day I call it a win. If I manage to get some house chores done and cook a meal mostly from scratch I give myself a lot of bonus points. My emotions are also right on the surface these days which I'm chalking up to exhaustion and simply being weary of the journey that has no end in immediate sight.  And yet my body has miraculously made it through another cycle with no nausea, no new reactions to chemo, and no infusions of any sort needed in-between cycles. 

Everything is beginning to take more of a toll on me physically, emotionally, and mentally.  The new year brings a lot of unknowns with it by way of next steps and further treatment.  Our maximum out of pocket goes up next year and we have a few claims from this year of which we aren’t sure our insurance will cover.  Despite all of that I fully expect miracles to keep happening. I know that I can make it through the final 2 cycles of this type of chemo thanks to the help, love, and support that we are so regularly shown.  Thank you for the continued prayers on our behalf.  I hope you all have a wonderfully merry Christmas and a happy New Years as well.