First doozy of a cycle

Back when I was first told that I have Sarcoma and the treatment was outlined for us - every 3 weeks, etc. - we assumed I would be in the hospital on Halloween.  As luck would have it I wasn't admitted until 2 days after Halloween so I was able to experience Elliott's first "real" Halloween and I'm so glad it worked out that way. We were able to attend our ward's Halloween dinner/trunk or treat the Friday before and take Elliott trick-or-treating on Halloween as well.  He dressed up as a T-rex which was perfect as not too long ago he learned that dinosaurs roar.  As soon as he saw his costume the first time he started to stomp his feet and roar. He wasn't a fan of the headpiece at the ward party but he kept it on most of the time on Halloween.

We mostly stopped at the houses of people we know but after a while and discovering that all he had to do for a treat was to knock on the door Elliott developed a mind of his own and would just randomly take off up strangers driveways to the door.  When someone Elliott knows well would open their door he would say "hi" and walk right into their house 😂 No one thought anything of it and took advantage of being able to have some fun with him for a few minutes.  He even got multiple treats out of the deal a few times because of it.  It was a perfect way to spend time as a family before starting my next week of chemotherapy.

I entered the hospital for cycle 3 of chemo almost a bit excited since after the 5 days of treatment ended I would be halfway through this round of AI chemo.  That is assuming of course that I make it through all 6 cycles of it in one shot which the more I hear from nurses and my oncologist is not a very common thing.  Most people's bodies need a break at some point meaning the remaining cycles get finished after some outpatient maintenance chemo has been done for a time. 

I told my oncologist that I'm aiming to be the anomaly who makes it through all 6.  Obviously there are a lot of things that could happen to throw a kink in that goal but I'm still holding out hope that my body can handle it.  That would mean I would be done with this particular round of chemo in January and who knows what will need to happen from there.  As of now the immediate plan after finishing would be assessing whether I could withstand surgery (only if needed of course) should there be any remaining tumors and such that could be taken care of that way.  Other than that it all completely depends on how well chemo is doing/continues to do its job as for what else I may need afterwards.

My first four days of treatment this time went just as well as the previous two cycles - no nausea/vomiting, none of the neurotoxicity reactions that could occur, no headaches or mouth sores, and no tingling sensations anywhere. I still get those weird hiccups a bit during treatment but they switched the steroid I'm given along with the chemo this time and that definitely helped since I didn't have the hiccups as much this time.  My parents visited a couple of times with my grandparents coming with them once.  Of course they brought Elliott along and as always it was absolutely wonderful seeing him.  I feel like my attitude and mood are pretty good for the most part already but when Elliott is around I feel that much better about everything.  There's just something about children, especially when it's your own.  Cliff spent most of the weekend at the hospital with me which was wonderful as well.

When I'm alone I spend a decent amount of time wandering around the hospital because who wants to stay in one room all day if you don't have to?  Sometimes I use my bluetooth earbuds to listen to music, podcasts, or audiobooks while I walk and other times I just enjoy people watching as I go.  The more I wander around the more I get the feeling that the staff - nurses, doctors, etc - aren't used to seeing admitted patients wandering around as much as I do.  There are certain places I enjoy walking where I almost always get a few double takes which I suppose isn't all to surprising since I'm wearing a hospital gown and always have my hand i.v. pole with me. One of my nurses also pointed out that part of the cause of their surprise is probably because of where I am at and that I have gotten that far all by myself.  Obviously I never forget that I have cancer but sometimes I feel like I forget I'm in a hospital completely dedicated to the treatment of cancer.  I've definitely been very fortunate so far in staying as mobile as I have been and not getting way sick as of yet.

So, the first four days went great and then the morning of day 5 happened.  For those who may have forgotten, I have an ostomy bag and because of how my body digests food and liquids right now I can get dehydrated much more easily than normal.  Well, overnight my stoma decided to have a party and my output was straight liquid for a few times in a row of me emptying my bag.  Since the nurses keep track off all of that when I'm in the hospital I don't track it myself like I normally do at home or else I probably would have realized that it was a higher amount than usual that was coming out.  However, since I don't track any of that myself during treatment and it was overnight so I'm obviously half out of it when I get up I didn't notice it.  All of that led to me almost passing out at 3:30am after I had gotten up to go to the bathroom.  I had just opened the bathroom door to walk back to my bed when all at once I got sweaty, my ears were ringing, and my vision went a bit blurry.  It came on so strong and so suddenly that it vaused me to collapse to my knees.  An aide was in my room at the time waiting to take my blood pressure and such so he ran over and pulled the cord on the wall.  Next thing I knee 4 nurses ran in to see what had happened.  My personal nurse knelt down by me and asked how I felt.  I explained what was going on and said I thought I'd be fine in a short time.  So, they all stayed there but just let me be on the floor for a few minutes until I said I thought I was okay to stand up. 

My nurse and the aide stayed to make sure I made it back into bed safe and sound and stuck around for about 10 minutes after as well to make sure I didn't get a headache or anything else.  I got a bit lightheaded again the next couple of times I got up so around 8am my nurse came in and said I needed to have someone in the room any time I got up for the foreseeable future.  She also said that they had determined that I was definitely dehydrated.

Being dehydrated explained why I almost passed out so they gave me some extra fluids. Then the oncologist who was there that morning told me to eat salty things throughout the day since salt helps retain water.  Not being able to wander around whenever I wanted that day was a bit of a let down but I finished a book I had been reading, completed multiple puzzles on my tablet, started reading a new book, and watched a couple episodes of a TV show.  I was taken off of watch status around 4:30pm with the stipulation that a nurse came with me the first time I got up to walk around.  After I ate dinner my nurse walked around the floor with me a couple of times then said I could do whatever I wanted as long as I promised to let her know if I got even a little bit lightheaded at any point again.  There wasn't any more excitement that day.

The next day was discharge day so I ordered breakfast as soon as I got up knowing that people from different departments would be coming in and out throughout the morning to give their spiel.  Things were going along great and I was just a couple of minutes short of freedom with my port getting de-accessed the last thing left to do.  My nurse pulled the needles out and a bit of pus and yellow liquid came out of the one side.  The oncologist had to come look at my port site and then left saying he'd let Dr F, my personal oncologist, know.  Long story short it took forever for a decision to be made on whether my port needed removed or not and probably would have taken longer.  At 3:30pm I hit the page button in my room and asked for the PA when my nurse came in.  

A few minutes later the PA came in and I pointed out that it had been 4 hours and nothing had happenedyet. I told her I was giving them 30 minutes to make a decision or else I was leaving even if meant needing to come back in a day or two.  My ultimatum definitely got the ball rolling since there was a resident there from the surgery team to look at it very quickly after that. She went to the head of her team and showed them a picture and they both wondered why there was a debate going on.  Their take on it was that if there was even a question of possible infection that the obvious route was to remove my port and send cultures from it in for some tests. I sure wish they were the first people asked about it because that made perfect sense to me. About 45 minutes from the time I gave my ultimatum my port had been removed and we were walking out the door. 

It was definitely the longest discharge day yet especially since Elliott was there the whole time as my mom was my ride home and he had been with my parents while I was in the hospital. Thank heavens we possibly have one of the most chill and easy-going two year old child in the world.  He is still very much a nap taker and usually sleeps anywhere between 1½-2½ hours each afternoon.  For not getting a nap and not having tons of snacks for him since we thought I'd be discharged much earlier than I was he was so good.  We rewarded him with one of his favorite foods - pasta - at Olive Garden before making the drive to my parent's house where cliff met us to go home.

Overall, chemo week #3 still went pretty well minus those couple of problems right at the end.  This round has yet again made me a bit more tired so as usual the first few days home I wasn't up to doing very much. I was discharged on Tuesday and other than being tired things were still going pretty great when I went in for my first set of labs Friday morning. I had a terrible night's sleep the night before so I was exhausted enough that we decided I better not drive myself in for them.

We dropped Elliott off to my sister-in-law and Cliff drove me in thanks to his boss being perfectly understanding and letting him leave work for a couple of hours.  As usual my white blood cell count had already dropped to 0 but everything else was normal for the first check other than my platelets being lower than they have been in the past.  We drove home and cliff went back to work while I slept for a few hours thanks to my sister-in-law being willing to keep Elliott while I did so.  I was still feeling pretty good that afternoon but that evening I had a few bouts of getting lightheaded.

Then Saturday came and things went downhill very first thing that morning. As soon as I got out of bed my ears started ringing and a few minutes later I got sweaty followed shortly by feeling lightheaded.  That continued to happen most of the day almost every time I stood up.  At one point I recalled learning that low blood pressure could be a cause of that so being positive I wasn't dehydrated again I started to check my blood pressure both when I was sitting and when I was standing. My diastolic bp - the lower number - stayed perfectly within the normal range but my systolic bp was dropping significantly each time I stood up. 

Thankfully I got a reprieve that evening and felt pretty good again.  We were able to spend the evening with some extended family on my husband's side which was wonderful as we hadn't most of them for a long while.  One of his relatives - his grandmother's half-brother's wife should anyone want to figure out her distinction - has had her own battles with cancer and we were able to talk to her for quite a while.  It was good hearing her experiences and talking to someone who knows what I'm going through right now.  As much support as I know I have in family and friends there are simply those times where it still feels like a bit of a lonely journey. Talking with her reminded me that there is always someone to be found that can relate to just about any trial that we may experience. 

Sunday came around and once again I felt lightheaded right when I got out of bed.  It didn't continue to happen every single time I stood as it had most of the day before but it kept happening frequently enough that I texted my mom letting her know I needed a ride into the Huntsman - the hospital where I receive chemo and everything - for my labs the next morning. 

We got to the hospital at 10:40am and they drew my blood right away to run labs. While waiting for those results a nurse called to say that Dr F had looked at the bp readings i had sent to them from Saturday and Sunday.  Those readings indicated that I was experiencing orthostatic hypotension which is when you have low blood pressure when you stand. She also let me know that the cultures from my port had come back and that there was an infection. The infection had made it into my bloodstream yet so nothing further needed to happen in that regard. She then directed me to one of the clinics where they gave me a mix of fluids that I was told would help with the lightheadedness. 

Shortly after I finished getting fluids my lab results came in and it was determined that I need to receive a unit of blood as well as both my platelets and hemoglobin were very low.  They have to type and screen your blood every time before you receive blood so that gave my mom and I time to leave to go get gyros for lunch.  My blood infusion was scheduled to start at 2:40pm but the blood ended up not getting to the infusion center until almost 4pm.  In the end we ended up getting back to my house around 6:30pm so it was a very long day.

I was worn out the next day due to being at the hospital the whole day Monday but I felt much better than I had all weekend and didn't get lightheaded even one time.  I can honestly say that last weekend was the hardest few days I've had yet as far as reactions been but I got through it and I was still able to recognize all the tender mercies along the way. 

Tonight was definitely a cancer milestone of an evening as my hair is officially gone.  Cycle 3 was the one that got my hair coming out in much larger amounts any time that I brushed or washed it.  So, rather than continuing to have that keep happening I opted to let my husband shave off the rest.  I cried a bit before we even started the process but quickly reminded myself that it's just hair and that I've gotten through everything so far so this is just another step.

I'm still hoping that I can get through the last 3 cycles in one go but if my body decides it needs a break I know it will all still be okay. I have my CT scan on November 28th and I will be admitted for cycle 4 on November 29th.  I'll meet with Dr F that morning to go over the scans so I'll keep you all updated once I learn more at that point. Until then I hope you all have a wonderful Thanksgiving and as always thanks for all the prayers, messages, and everything else.