It started out as an ordinary day…..regular trip to the oncologist – check the blood levels, and back home. Except this turned out to be anything but ordinary!
First was an ‘added-on’ appointment – the oncologist had detected sounds and told me I had pneumonia, and should go see a pulmonist – also to try (again) to find the cause of the cough I have had for literally years. So off we went, and the ‘swallow test’ was only moderately awful – you would think that somehow they could make the nasty barium taste better….ugh!
We had time left before the appointment for my blood tests, so I got to go to my favorite thrift store and get a few goodies, and we stopped and had lunch at Arby’s – these were both unplanned and made the day even more fun – found some bargains and had a yummy lunch!
We were still early – but decided to go ahead over to the oncologist – and getting there early turned out to be a good thing – got right in to get the blood tests, and then headed back to see the nurse in the infusion room and get my results. Usually, these interim test results are brought by one of the other nurses, not what I think of as THE nurse. But she didn’t come – so we waited. They were pretty busy, so I didn’t mind waiting – this was routine, after all. Then she came and sat down, and laid it on the line….’Trish, these are awful!’ Uh oh….. and they were. White Blood Count down to 4.4, Red Blood Count down to 2.71 (first time this was low), Hemoglobin down to 8.3 – and then the Platelets…..down to 8. Yes – single digit 8. My previous low on platelets had been 11 – and I knew the oncologist’s ‘bottom line’ was 10 – so….what to do. First I got a injection of Aranesp for the red blood cells – then they tried to arrange getting the platelets in time to do the infusion this afternoon – but it was too late.
I needed the platelets, so the only way to get them was to go to the ER and get them there – and then the adventure began……the oncologist’s office called over to the ER to let them know I was coming, and had JUST had my blood drawn – so they didn’t need to repeat it. They agreed (ha!)
It was around 2:30pm when we arrived at the ER and proceeded to wait. I had all my paperwork from the oncologist’s office with me – with all the information they would need, but no one was interested in looking at it. Well, maybe later. We filled the time with people-watching as they came and went in the doors. We were a bit surprised that if the employees (and there were plenty of them) were not actually talking to someone, it seemed it was ok to just hang out and talk about their own lives – joking around and chatting – and I’m thinking…..do they have nothing else to do when the walk-in traffic slows down? Hmmmm. After about an hour – and I think that is their version of ‘lightning speed’ – I was taken back to a room in the ER and the nice guy who walked me back also found me two warm blankets – wonderful! I was just freezing! Then in came the nurse – to whom I offered my pack of paperwork to read – total non- interest. And….just as I thought, even though the oncologist office had just done my bloodwork – they were ‘going to do our own – we just like it that way.’ Uh huh – translation – we want to bill it, not read someone else’s work. I told them I had a ‘power port’ – kind of a central place thru which chemo can be infused directly – and can also be used to draw blood for testing. The response? ‘Oh, well, we don’t want to mess with a port someone else put in, so we’ll just find a vein and draw it from your arm.’ And I knew this would not end well….
So – she tried – and actually got the necessary draws for re-doing the testing, and then blew the vein – giant bruise. So – tried the other arm – had to get a needle in to give me the platelets….since they would not use the port – and even using a smaller needle – instantly blew that vein…..another even larger bruise. So….she took the blood to send to the lab and said she’d find someone else to put in the needle for the infusion. And so we waited some more…..won’t even go into how incredibly uncomfortable the bed is in the ER – not to mention the chair my poor husband was stuck with…. I was still freezing, and they did bring me some more warm blankets – I am now wrapped up in four of them…..and I’m still cold….and we waited…. around 5:30pm or so – we finally got to see the doctor (who was ‘tied up with someone else’ til then) who came in and said that he was ordering the platelets and we’d get this infusion going. And I’m thinking…..you knew this hours ago and are just NOW dealing with it? Ok then…. but then things really went off the rails….
I had asked that the room door be open – I just like seeing what is going on – being endlessly curious about the goings on in an ER in real time. Watched the nurses try more than once to find out what was happening with the platelets – to no avail. At some point, one of them came in and said ‘we’re having trouble locating the pathologist who ordered the platelets’ – really? Does he not work here? Does the matching etc not get done here? Yes and yes…..but no more info…. Did I mention that we are now at dinner time – and still no one had the least interest in looking at the paperwork I had brought with me? But I did get the feeling that they were unhappy that I was just watching all that was going on…..and in a little while…..they came in and said they were moving me to a ‘quieter, more comfortable room’ – hmmmm….well, ok – am not going to turn down comfort, and neither was my husband!
Got all settled down in the new room – so comfortable!! Some time in the afternoon, a nurse had mentioned that the doctor ‘might have ordered some food for me’…..but no – he did not. So Lucian was off on the mission to obtain food for us… we had already discovered that ice was a precious commodity in the ER – we repeatedly asked for – and received one styrofoam cup with ice and water. Never learned where the ice machine was – or we would have helped ourselves…..but no…..and then we met Annie and Bobbi Jo! And everything changed! Annie set off on a mission to find out the whereabouts of the platelets…and enlisted Bobbi Jo in the quest – how blessed we were to have these two on our side! Meantime, Lucian made up a sign and posted it to Facebook (my phone memory was gone after 10 minutes of FB, his did better!). It got quite a bit of attention…..
Now we are way past dinner and still no platelets…..we were hoping the sign would produce results….it didn’t, but Annie and Bobbi Jo did! Never found out where the platelets were all afternoon ( I suspect they never got ordered) – but they did find out the platelets had to be ordered from the Red Cross – contrary to us being told they were here, but just waiting for them to come upstairs…..hmmmm. Now there was hope…..they had been ordered, just not from where we were told – and finally!!!! THE phone call saying they were on their way to our floor!! This time, they told us about 15 minutes….and guess what? it was 15 minutes – amazing how a little truth can boost the spirits! Annie and Bobbi Jo sprang into action – got the infusion pump, got a temp machine to take my vitals – it was something to watch them working together to get er done! Small glitch….my temp had been climbing…..and there was concern it might be too high to start the infusion – but God stepped in and calmed that fear – and we were good to go! And what time, you ask, did these platelets start going into me? We came to the ER at 2:30pm – and it was now 9:00pm – just a tad excessive, I think. From then on, Annie and Bobbi Jo showed up in the room every 15 minutes – take the vitals, speed up the infusion….then showed us how to find out how much time was left by reading the pump – praising God for these two women who were the fountain of good information where we had had hours of no or incorrect information!
One bonus from this extended stay in the ER was that we got to watch the entire evening lineup on Fox News – Tucker Carlson, Sean Hannity etc – so nice to hear REAL news for a while!! At long last – it was just before 1:00am, and the infusion was done! Got dressed in record time, and the doctor gave us our exit paperwork – and we hit the road – got home just after 2:00am – and have never been so glad to get into bed and off to sleep!!! They have at the hospital – an award for nurses who go above and beyond what they ‘have’ to do…..and boy both Annie and Bobbi Jo qualify completely!!
Wondering….what will next week bring? I’ll let you know!!!
I hesitated to come out and post anything after my last chemo treatment – somehow I just didn’t want to have another ‘downer’ type post about how tired and awful I felt – figured no one wanted to hear that….so I waited. The last treatment was the ‘mini’ (translate – all drugs were half dosages) after the really bad ‘maxi’ treatment, but even so I learned that it takes me a full 10 days to get back to feeling ‘myself’ again.
Now that I am feeling good again, my mind has been filled with the ‘small gifts’ I have been given – starting with last Friday… I still wasn’t totally back to feeling myself, but as we started off for another trip to Virginia Beach, I looked outside at the sky and the landscape and thanked God for providing all this beauty! The first gift was that this particular trip to Virginia Beach was that it was not MY doctor appointment, it was my husband’s – so I was just along for the ride!
As we drove along, I looked out at the fields of cotton, which are now being harvested – like snowballs on stalks, they made the fields white as far as the eye could see….another gift! This made me think of all the huge bales of cotton – some big rectangles the size of semi trailers, and some fat round bales wrapped up in colorful plastic, all destined for the Cotton Gin. Had to look that up and find out exactly what the Cotton Gin did. The one we pass is in Suffolk, VA, and is a big metal building with a huge lot out front that is chock full of those bales of cotton. I found that the Cotton Gin (short for Cotton Engine), houses the machine that removes the seeds from the cotton, then dries, combs and bales the cotton for transport to the next step in what it will become. So I learned something new….a gift!
I worry each time we are on the road that there not be any accidents, and or other holdups on our trip – and this morning was no exception – except that the worry came true – there was an accident, and we crawled forward for a good 20 minutes to get past the accident site. We always build in extra traveling time for just this kind of thing, but now our cushion was gone, and I was praying that we not be late to our appointment. And my prayers were answered – clear sailing over the high rise bridge, and onto the road we needed to be on….and we pulled in to the doctor’s with a few minutes to spare and a whole line of handicap spaces …..all empty! Another gift! The doctor’s appointment went well – all was good, and we were sent on our way for 6 months, instead of 3! Yep – that’s another gift!
After that, I asked if we could go to IHOP instead of our usual Wendy’s drive-thru – so after finishing up our errands, we had lunch at IHOP – and I got my favorite Belgian waffle (wondering when they stopped putting pecans on the bottom of it), and it tasted so very good – another positive change – it tasted good! So, yes, put it down as another gift!
Not the most fascinating trip ever taken, but I discovered that a lot of your attitude and feelings directly relate to how you choose to view things – and sometimes the best gifts of all are the small ones!
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!
Up and out the door at 6:00 am – made for a very short night! As we started out, I prayed – and gave the day, the treatment to come, and this whole new cancer battle to God. I KNOW He is there for me, and I put words to the trust I have in Him to bring about His version of my story!
It was very foggy when we started, dark, warm and humid! Seeing the fog makes me think that the clouds have come down to visit earth before the sun comes up. As the sun did come up, it was an absolutely beautiful morning – blue skies, fluffy clouds and bright sunshine – putting the best face on the coming weather and my coming treatment. Due to next to nothing traffic, we were the first car in the parking lot at the treatment center…..so we took time to check email, catch up on a bit of news, and even a game of Candy Crush!
As we entered the infusion room, we were again the first ones there too – laughed to myself remembering all the church events Lucian and I have been to – and there too, we were always the ‘first ones there’ and the ‘last ones to leave’…lol! Picked out the recliner back by the huge windows that had a chair for Lucian – not nearly as comfy as mine. We then realized we had forgotten a cushion for him to put on the chair, and a book to read. – won’t forget next week!
The plan for the day was pre-meds first, then the chemo drugs, and last, the Gazyva – the big unknown in the treatment for me. The nurse got things going, and we were into treatment One – first day. First the pre-meds – for nausea and to guard against any bad reaction that might want to make an appearance. They take about an hour to administer – and on to the chemo – the prednisone – the only one taken orally, then the three chemo drugs – and all went very well – no bad reactions to them – but lots of warnings of all the ‘possible’ side effects (don’t ya just love hearing the commercials for drugs on TV – where the list of ‘possibles’ does NOT make you want to ever take it! But, these are the weapons at hand, and we will use them all to defeat this new enemy! We shall see about which one actually show up – praying hard about those!
Now the true unknown was up and ready to be administered – this is an immunological antibody – so is not technically chemo. It finds the cancer cells, and tells your body’s immune system to come and kill it – and it has been remarkably efficient in doing just that. I will confess that I was really nervous for the first 20 minutes of this VERY SLOW IV drip – for that was the timing for the massive reaction I had when I first was given Rituxan. Watching the drip ….watching the clock……prayers with each passing moment. At what a wonderful sense of relief when that deadline came…..and went……with no bad effects at all! YAY!!!
Now the deadline went out to – when will it be done? This last infusion started up around 11:20 am….and every 20 minutes or so, the speed of the drip was increased – cannot believe how many levels of SLOW there are!! Filled in the time reading a book, nibbling on snacks, and drinking LOTS of water. We were doubly glad we had brought snacks, as the coming Hurricane must have prompted the folks who normally bring everyone lunch did not come – no doubt home trying to get ready for the bad weather. Even the treatment center will be closed the next two days – something they NEVER do – but this time they did for the safety of everyone from doctors, to staff and the patients.
Before the treatment ended, I got another new experience – I had been given before a drug called Neulasta – the day following treatment to boost up blood counts, which fall with the effects of chemo. But this time was different – no coming back to the treatment center for an injection – this little gizmo is attached to your body and has the drug onboard and timed to be delivered 27 hours after chemo. Nice to not have to make another trip for that! Once we got all that squared away and instructions given, written, and demonstrated – the IV finally gave up the last drop….and about 4:30 pm – I was done, and we were free to come home – the room was empty when we left except for staff! It was a very long day – left at 6:00 am and walked in the house at 6:00 pm – wow!
Celebrating and thanking God for a very long, but well worth it first round – next week comes round two!
….and I should have known! We were busy making sure that all things were in place, that plans and information was gathered and ready – then…..
But I digress – I had gone to the hospital and the medi-port was put in, and one of the ‘new’ lymph nodes that indicated new cancer was removed and sent to the lab to identify and be sure of just what cancer we were dealing with. The assumption was that it was the same indolent (read slow-growing), splenic, marginal zone b-cell non-hodgkins lymphoma. Quite a mouthful, right?! I was discharged from the hospital, and we came home to rest up and recover from this step.
Meanwhile, we went to the Oncology office to have “chemo class.” We learned all about Gazyva (an immunological antibody) and Bendamustine ( a chemo drug). I have never had either of these drugs, but knew generally what they would do – the Gazyva would target all the cancerous B-cells and flag them for the body’s immune system to come and kill, and the Bendamustine would do much the same thing – only this drug is unable to ‘target’ any kind of cell – so it goes for all the cancer cells it can find – along with other cells that are ok, but in the wrong place at the wrong time. For me this was so good to hear – I am one of those folks who wants ALL the information, good, bad, and ugly – so this was great information. Somehow knowing what you are taking and what it would do helps immensely in feeling more ‘in control’ of the situation. Of course, along with that came the info on all the side effects and things that ‘might’ happen – makes for scary reading – but worth every bit of it when it does it’s job and the cancer is beat back into submission and me into remission!
On Sept. 5, I had my appointment with the oncologist, the nurse-practitioner, Lucian and I. And all the plans made so far got blown out of the water. The doctor had the results of the biopsy, and now there was a new player on the cancer field. Along with my NHL (non-hodgkins lymphoma) that I have been battling since 2010, now some of that cancer had transformed itself, and turned into another form of NHL. That was not good news, but not only was it a new form, called Follicular Lymphoma, it was also classed as Stage 3B. Stage 3B is not indolent cancer, it is an aggressive form of cancer……and the whole game changed with that one sentence. The old plan was tossed out, and a new one needed to be put in place – and it was called G-CHOP. Doncha just love all these weird acronyms? The good news in this was that this new aggressive form of lymphoma is also classed as ‘curable’ – meaning it could be killed for good!
Now we have a new plan – and today we went to another session of ‘chemo’ class to find out all about it. I already knew about Gazyva – that remains as the immunological targeted antibody that would go after those cancerous B-cells – but the chemo component is a real bunch of ‘bad guys’ – whew! the acronym CHOP stands for the four drugs that make up the regimen: C is for cyclophosphamide (which I have had before), H is for doxorubicin (no idea where the H is in this name). I have not had this drug before. The O is for vincristine – one of the brand names of t his drug starts with O – hence the O in the acronym. And finally comes P – which is for Prednisone – which I thing everyone is familiar with. Except for the Prednisone, the chemo drugs interfere with the cancer cells and prevent them from dividing and making new cancer cells – a good thing. Bad thing is they come with a bunch of side effects that are not so great – but if they do their job, this temporary bad stuff will result in curing this aggressive cancer for good!
The other not so great thing is I am going from getting a treatment that took 8 minutes and was just a shot in the tummy, to a all-day long IV session – first time is estimated to take 6-7 hours (yup that DID say hours!) – not only that but it is given in a 21-day cycle, and right now, the plan is 6 cycles, which basically means that every single week, my Wednesdays will be spent getting the chemo and Gazyva. At least I get to lay back in a nice recliner – my poor husband gets a sorta one step up from a metal folding chair to sit in. So we’ll be hitting the road REAL early to arrive in time for the appointments at 7:45 am. We’ll be packing snacks, bringing a cushion for Lucian, and lots of reading material – and the laptop and tablet and phones so we can stay connected. I would SO appreciate any prayers you could say for us both as we start on this new journey – and I know we’ll both be praising God thru it all – because HE is in control, and we trust Him completely!