Tuesday, October 16, 2012

Long day and longer night

No one talks about hospital stays, or chemo, as very fun and am finding the two combined to not be an experience I hope to repeat soon.

In general, the days are going are much better than the nights. I am able to stay positive during the day since last week when I found out I was really sick, but at night usually I am very tired, and not feeling great, and that then makes me mentally/emotionally not do as well... last night this was compounded by confusion here at the hospital leading to mulitple attempts at getting an IV line started in my left arm in addtion to the PICC.

My platelet levels are pretty low (leading to lovely things like a huge swollen purple bruise around my PICC) so they wanted to give me an infusion last night. The day nurses and my doctor has said the chemo would go in through one line in the PICC and the second could be used for blood, platelets, antiobiotics, etc. However, by the time the platelets were ready all the staff had shifted over to night. The protocol they wanted to follow was a separate IV in my left arm to make sure if I had an allergic reaction they could tell what it was too. That made sense so the nurse tried (strike 1), she tried again (strike 2) and then she called in the head nurse who "never" misses and at this point we are up to my hand and each try is getting more painful... so when she struck out as well I bursted into tears and begged them to see if there was another option. I also called my oncology friend who had some great options to suggest (i.e., just pause chemo for 20 minutes to let the platelets run or see if a Peds nurse who is use to small veins could try). Luckily the Fellow on call agreed to wait until the morning.

At this point my left arm was throbbing, my body was still getting use to the chemo and was not comfortable and the tears had started... I called Chad on his cell phone, then texted and then on our home phone (a couple times) to try and wake up the dog to wake him but to no avail (click up in the tears). My nurse came in sat on my bed, and said I brought you something, and I knew before she said anything it was something to help sleep which I gladly accepted. I usually don't do much in the way of medicine but after everything else going into my body figured this was the least of my concrens. So my sister, Robin, was the lucky recepient of the very teary called. She made me feel much better, the meds kicked in and I drifted off to sleep until the first night check (adn the 2nd, 3rd, and so on). If you want to be on the list accepting late night teary calls just text me :).

This morning my body is use to the chemo, the day nurses and my doctor were back and everyone agreed the platelets and blood could go through the PICC (yeah). My room was literaly standing room only for rounds this morning. The hospital has a dedicated dietician to this unit she came by for awhile. Because my white blood count cells are so low I am on a strict diet to avoid food born infections. Luckily cookies are not restricted. Thank to everyone at work for the lovely cookie bouquet! It is beautiful and I am sure delicious (looks too good to eat just yet). They kept telling me they want me to eat whatever I can because that will aid in my recovery. I have not lost my appetite, and unexplained weight loss is literally the only hairy cell luekemia symptom, so think I may also be an anamoly and be the only person ever on this chemo to actually gain weight... but really the least of my concerns.

Counting down the hours until I can check off the first bag of chemo being done and then just 6 more to go.


  1. Beth, I'm so sorry to hear how rough your night was. I'm sure this was a complilation of everything that has been occurring for months. You are entitled to a good cry! You don't have to be brave every minute and this is when those who love you can finally help in your battle. So, do reach out. It's sad you are there alone trying to find someone to cry to. Feel free to text/call me at anytime, day or night - I'm usually awake. Let me know if you don't have the number handy.

  2. I was so happy to hear from you Beth in your email. Yet so sad you have to endure all this pain. I am in tears for you yet smiling just the same at yours and Chad's humor. You both are so strong and will make it through this. Can't wait to see your longer hair Beth and catch up about all the things the girls are doing nowadays. LOVE to you both....you are in my thoughts and prayers.

  3. Hi Beth, I am crying after reading your blog as I can imagine what you you felt after all the pain of the day and night and on top of that not being able to talk to your husband about it. I really hope you get better with this treatment and I am very glad to know it is a treatable type of leukemia. I will be happy to talk with you or text(though, I can not guarantee you I'll not cry sometimes over the phone too, sorry!). Since I am two hours of difference and typically up late then you have a good chance to be able to talk late at night with me! We'll keep you in our prayers.

  4. Hi Beth - Please know that I am thinking about you daily and know all too well the trials you are going through although I never had to spend the nights in the hospital. Keep your positive attitude and humor and the time will fly by. If you ever want to talk, vent, cry, whatever, please call - I'm always up late. LIVESTRONG!

  5. Hi Beth - I am thinking of you all the time and I'm sorry to hear you had a rough night! Feel free to text/call anytime you're looking for a friend, distraction or just someone to vent to. I'm confident we can come up with plenty of topics to discuss!