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!
You know it’s the end of summer when you hit the road at 6:00 am and it is dark. This is just too early to be heading out for anything!
We were heading out to Virginia Beach to the hospital – two procedures to be done before my chemo treatments can begin – and I was hoping that starting out so early would mean that I would be first in line for the OR? Probably not, but one can hope! 🙂 It was nice to travel that early, once our eyelids were propped open – not much traffic, and you could almost feel the silence and the calm start to the day. Prayed on the way, watching it get lighter and lighter, that God would keep the roads clear of bad traffic, and that there wouldn’t be a back up at the high rise bridge – and both those prayers were answered.
Checking in at the hospital was quiet and calm at this hour – now 7:30 am – not many folks there yet, waiting rooms empty except for staff – so no waiting in line – got registered, and interesting – at least at Leigh Hospital – they now have a tracking system, so whoever is waiting for you can tell up on a computer monitor in the waiting room can tell exactly where you are in the progress of your visit – all color coded – I was not on the ‘waiting’ end, but I like the idea of being able to know somewhat what is going on.
Was taken back to be prepped for surgery – and of course my first request was for a blanket, being the ‘always-cold’ person – and lo and behold, they now have hospital gowns with ports in them that can be hooked up to warm air – and you can control how warm and how much fan! Wonder of wonders. I put on the gown, and realized it was a ‘one size fits all’ and it was a tad large – down to my feet and over my hands large, but small price for warmth. However, once Lucian got it hooked up and running, I felt like a hot air balloon about to take off – the gown had two layers and all the air went in between and blew that gown right up. I must have been quite the sight…lol! Once we moved it to a lower port and turned the fan down, it was nice!
Met the anesthesiologist and he explained what he would do, then the surgeon came in with a quick recap – first the port on whichever side had the best vein, then the biopsy. I even got to meet the nurses who would be in surgery too – kind of nice to see the people who would be helping me! A nurse started the IV, and told me that’s how they would put me to sleep – and that all would be well. I remember part of the trip to the OR, and moving over to the table – and then I was waking up in the recovery room, and about an hour later, Lucian was taking us home!
Although the reasons for the hospital visit were not the greatest, all the staff people, the RNs, Doctors, and the support staff were all very upbeat and kind to me – for the ugly reason I was there, they made it a pleasant experience – and the trip home was filled with thanking God that we are one step closer to beating this thing one more time…..
This was supposed to be the cherry on top of the whipped cream – the one test that would tell me that once again, cancer had been beat back – and that I had won this round. Interesting to me that the Scanner is housed in what amounts to a semi–trailer – complete with little elevator to get you inside. Inside is very cramped, but everyone is so nice, and there’s lots of joking around while they prepare the nice radioactive sugar to put in you that tells the tale.
The scan showed that not only was the cancer not gone, it was back in new and different places – not at all the news I wanted to hear! My first thought was…..ok….what do we do now? What gets done when the ‘go-to’ immunological antibody that had always worked before – fails? Is there a ‘plan B’?
After the initial shock – I was all over the internet, and back to the forums of people in my same boat – battling this cancer – non-hodgkins lymphoma. I got some good answers and lots of leads for reading – so I was ready to go to the appointment with my oncologist and the Nurse Practitioner. Of course, they knew that I already knew what the test had revealed – so it was on to solutions.
Seems the next line of defense was to use a different immunological antibody and combine it with a chemo drug – to attack and hopefully defeat the cancer and put me back in remission. The new immunological antibody is called – are you ready for this? – Obinutuzumab – what a mouthful! But, there is a brand name for this and it is called Gazyva. The chemo drug to be added was Bendamustine – not quite as much a mouthful – but it also has a brand name – Treanda. So – the tentative plan is to do 6 rounds of this combination of antibodies and chemo, then another PET/CT scan to see if it has done the job!
Good news is that this combo has been very successful in treating folks like me who had the previous treatment fail – so yay! Bad news is – the previous treatment was down to an 8 minute injection – but the new treatment was back to all day in the infusion room hooked up to the IV. But, that’s ok – it’s the results that matter – so onward and upward. Before we could start – the doc wanted a new CAT scan to see if there are more bad guys lurking anywhere else in my body, and a biopsy of one of the lymph nodes to make sure the cancer hasn’t turned itself into some other kind (yup – it happens!), and putting in a medi-port – because my veins are too small to take the repeated long infusions.
I have been inching my way to getting more into the website/blogging thing. Made the site….then made a habit of adding something to it every day – which I have done by putting a scripture up every morning… now I am going a bit further….ta da! Content!
Thinking about the things I know most about that interest me enough to write about and share – and hopefully that others will also be interested enough to read and respond to – decided to stick to what I know most about. Three things come to mind….and they are all “Cs” – Christianity, Crafts and Cancer. Going to let the scriptures stand on their own for now – they certainly don’t need any explanation – and already serve as a ‘thought for the day.”
I make beaded Cancer Awareness ribbons – and it got me thinking – where did they start? How did the whole ‘colors for a cause’ get moving? And therein I found an interesting story – which I will share what I have gleaned and give you a link back to one of the sources I used for this. Ribbons got their start as symbols with the yellow ribbons around the trees. I remember seeing them – and re-learned that it started with one wife wanting to see a reminder of her hope to see her husband again. He was a hostage in Iran – ugly time that was. A decade later, the ribbon was again used – this time to raise awareness for AIDS – and the ribbon then was red.
In 1991, there was a lady, Charlotte Haley, in Simi Valley, CA who wanted to raise awareness – and to advocate for more research into causes for breast cancer. She made them by hand in her dining room. She attached a set of 5 to a card, and gave them out in her town, trying to get publicity for her cause. She wrote to prominent women, from the first lady to ‘Dear Abby’, trying to get publicity. Interesting note….her ribbon was a peach color, NOT pink. She asked for no money – just that people learn how little money being raised by the National Cancer Institute was actually devoted to prevention – about 5%.
The next year, the magazine “Self” was preparing a magazine spread for Breast Cancer Awareness month, and the editor heard about Charlotte and contacted her about her handmade ribbons. Surprisingly, Charlotte declined the offer from Self – saying the magazine was “too commercial”. Imagine that! Not to be stopped, Self magazine consulted lawyers and discovered they could still use a ribbon if they wanted – it just had to be a different color. And so…..they picked pink, and a movement was born. After that magazine hit the streets, the pink ribbon became the symbol, and Charlotte’s peach ribbon and her efforts were largely forgotten. Since that time, the pink ribbon has become a marketing juggernaut, earning millions of dollars from folks thinking they were somehow helping to find a cure for breast cancer. There is a large difference between the ’cause marketing’ and the funding of research. We still have no cure, and the incidence of breast cancer has hardly changed in the years since.
All this to answer my question – how did the colored ribbons start – and the answer is that the organization that is behind the fund raising is the one who usually picks the color for the cause. My own interest in all this is because I was diagnosed with Non-Hodgkins Lymphoma in 2010 – and am now in my fourth bout with it. It was the Leukemia and Lymphoma Foundation that came up with the lime green color. I am so glad to report that I have received help personally with the costs of treatment from this organization, and that a great deal of the money raised DOES go to research and the pursuit of a cure. Might not be as famous as pink, but I am proud to wear my lime green!!