I did think it was just going to be a week as usual – marking mostly that I’d gotten thru another treatment – ah, how wrong I was!
I did expect to feel bad – I knew that the Neulasta shot was going to give me some grief – it is, after all, designed to make your white blood cells reproduce at an accelerated rate – after a day or so of that, I really did expect to bounce back (well, maybe not ‘bounce’ ) to feeling my normal self. Next day was even worse than the first – and I was kind of blindsided. I remember clearly the bone pain getting those new cells made, but I did not expect my entire body to hurt – ears, head, throat, you name it, and it hurt.
I got through the weekend, and was hoping for a decent week – but it was not. Instead of getting slowly better, I was getting worse – and I remember thinking ‘what is going on here? I should not feel so really awful all over!’ By Tuesday evening I was running a low fever – just hoping to get some sleep – but woke up every hour or so in misery. By the time 9:00 am came around, I was feeling so bad that I woke Lucian up and asked him to take me to the ER. I sure did not want to go, but money or not, I just had to do something. So into the car, and off we went to Franklin and Southhampton Memorial Hospital. I could not tell them why it was that I hurt so, but hoping they could tell me. They got right on the phone to my oncologist, and meantime did some tests to eliminate all they could. They did tell me that my White Blood Count was 0.4, and my Platelets were at 17. Those are some LOW counts! Word came back that the oncologist thought that I was was having really severe reactions to the Neulasta. I had an appointment with him the following day, and he said to come in.
When I got to the oncologist’s office, they did my blood counts, and they were even lower! My White Blood Count was now 0.3, platelets were holding at 17, and my ANC (which shows how well you can fight off an infection – which should be around 4-5) was 0.12. I also now weighed less than I ever have in my adult life – Wow – those were not lows that I wanted at all. My oncologist came and talked to me and said that my body just cannot tolerate the full dose of CHOP, and these levels were from that. Going back to the ‘mini’ version with the next treatment. Went back to the oncologist the next day, so they could see if the levels were coming up – and thank God! they were ! Had to laugh at myself, me, the one who has been ‘on a diet’ since I was in the 8th grade, was getting on the scale hoping that it went UP! A real first there, and indeed, it was up too. Now just giving my body time to build up after this little episode, and be back ready to fight on by my next treatment later this month.
Not the happiest of posts – but though I got knocked down pretty bad, God and my dear hubby, Lucian, have been right there with me every second of the way – and with that kind of backup, nothing can keep me down!
The first little triumph of the day was not having to hit the road at 6:00 am! Having been thru the entire cycle of chemo once, we had a better idea of just how long it would take, and we therefore nixed any more early morning appointments. So it was much nicer to be able to start off at 8:30am and be there in plenty of time for our 10:00am appointment.
Then came the explanation for the mysterious words of what chemo regimen I got the first time round – it was referred to as a ‘mini-chop’. And this time, it was to be different – seems that the first time, the docs wanted to be sure my body could take the chemo and handle it ok on a smaller scale before they brought on the big guns. I passed that test, so now it was on to the ‘maxi-chop!’ All right – bring it on!
The first thing I noticed was a LOT more anti-nausea pre-meds…..not the greatest sign in the world – so I could expect that was going to be a bigger side effect this time round. These would get me thru whatever went on during the treatment, and I had meds at home to get me through what might happen after. After that, it was just a progression of moving from bag to bag of the drugs that make up the C-H-O-P. Still made for a bit of a long day – and before we were ready to go, they brought out the ‘Neulasta On-Board’ to attach to my belly. It is a delayed delivery that would automatically inject the Neulasta about 27 hours after my chemo treatment. This saved us a trip back to the doctor to get that shot – it is designed to boost your white blood cell count which gets pushed down by the chemo.
Funny story about last week and the little ‘on-board’ doohickey. It is pretty small – maybe a couple inches square – and it blinks. All.The.Time. Little green light, blinking to let me know it is working. I was told it would do this, and also that it would beep to let me know when it was going to inject the drug, and beep again when it was done. Sometime during the night, I got up to go to the bathroom, and thought it was lightning outside – but there was no sound….then I realized I was the thing lighting up, not the weather! I guess I wasn’t awake enough to make the connection right away…lol! Even funnier was the next day, when, having forgotten all about the beeping that was to come, my honey and I were in the kitchen, and heard this ‘beep…beep’ – we looked all around, was it the microwave? No….maybe the oven? No….the coffee maker? No….Then we both realized – it again was ME that was beeping! Quick lesson on how to feel like an idiot! And some comic relief!
Then came the tough part – or parts – the first two days after the last treatment were not fun – but this time with the max dosage – it was worse. Beyond tired, hurting, and nauseous – what a fun combination! Took my meds, and just decided to spend the day doing absolutely nothing but napping and watching TV. Sometimes you just have to hunker down and get through it – and I did. This is day two, still not great, but much better than yesterday. The little Neulasta doohickey did it’s thing, and now just need to deal with the pain that brings – but it is temporary. YAY!
The really hard part of today was admitting that the nurses were correct, and though I had escaped it in 2010, this chemo was going to make me lose my hair. Awful feeling. I kept hoping that it would not happen, but the evidence was clear every day, as more and more was coming out. The sweet gal at the beauty salon offered to cut it all off for free, if and when I wanted her too – I so appreciated that – but the thought of sitting in a salon while all my hair got chopped off was more than I could bear. My dear husband came to the rescue, and told me he would do it for me – when I was ready. Today, I was ready, and with prayers to start and many tears, he did this for me. That is love. It was hard, but now it is done, and I have a wig, and hats – so maybe it won’t be near as bad as my imagination paints it! I know it won’t – the anticipation of something is always much worse than the reality!