11:15 AM
Finally... a chemo morning where I was prepared, on time and shit didn't hit the fan or go wrong. The last three times I've been in for treatment (or to try for treatment), there's been any number of things that have been problematic. First time my alarm was set incorrectly but luckily I was so overtly prepared that we weren't running more than five minutes late. Same morning the coffee shop stopped carrying my favorite breakfast item, and I spilled half my coffee. Second return for chemo I not only spilled half my lunch into the garbage bag and all over the floor of the doctor's office, but my counts were too low to get treatment. The third trip to get the second treatment I completely forgot my numbing cream and was just not as prepared.
This morning I was prepared, up on time, got the breakfast and coffee I wanted, was on time for appointments, numbed up everything so I haven't felt a single needle poke, and I have lovely company for the entire session. Thank goodness for a successful chemo morning. Now I'm a bit doubly anxious about my afternoon appointment with my radiation oncologist and the results from my latest brain MRI. I just can't imagine the day is going to go swimmingly from start to finish.
So as for the chemo this morning. I'm all hooked up and through the first couple of pre-chemo counter-active drugs.
1:45 PM
My second friend, and companion for the next couple of days showed up a bit ago. And after a jaunty bit of conversation amoung the three of us, we were informed of the policy of only one visitor per patient in the infusion room. Harumph! So I've bid adieu to my morning companion and now preparing to finish out the treatment session here.
2:30 PM
All finished up with the chemo treatment. My lovely 5FU pump is back on boon companion status for the next 48 hours. Now to research take-out options for dinner and get downstairs to meet with my radiation oncologist for the results from my brain MRI. I'll update either here, or a separate post, this evening to share the results from that meeting.
So I'm calling it out for this "live" blogging edition this round. Hope you're all having fantabulous days out there.
Quite a crazy and busy week it has been. I was up in the far too early hours this morning to have the follow-up MRI scan on my brain. Next Monday late afternoon I will get the results from this and then we will know if the radiation treatment did its job (fingers crossed), and whether there is anything else up there we need to be worried about (knock on wood). I will blog with the info about that either Monday evening or Tuesday. That is also chemo day, so we will see how awake and coherent I am to actually consider writing Monday evening.
I was reminded early last week why it is important to "lean in" on my support network. It has always been a little hard for me to take too much from people. I have often worried about anyone feeling taken advantage of. But I have to recognize that offers are made with open hearts and do as much for the giver as for me. I do know this from the giving side; I have felt that satisfaction from helping and making a difference. And it has been a good week for the leaning in. As a matter of fact, for my chemo next Monday I not only have a ride but also company for infusion. And then another girlfriend is picking me up and staying with me for a couple of days. I'm going to start feeling pretty spoiled pretty quickly.
Thanksgiving is just a few days away and I'm looking forward to some extended time with my family. I know my sister and I have gotten pretty spoiled with seeing one another every couple of weeks. And it already feels like an age since she was here less than two weeks ago. We will go in to full-on Christmas decorating mode on Friday and Saturday. And then I will come home and do the same again with the Roomie.
A nice quiet day today. The cold I thought I was picking up seems to be clearing with the steroid inhaler that I haven't used for a few weeks. Who knew that medications can actually help the way they're supposed to do? (tongue firmly in cheek) Sunday was a rough day, mostly slept it away. Which was an important way to spend it. The cold mentioned above and a couple of long late days and nights with friends caught up with me. Today I am definitely feeling better on a number of fronts.
I have several notes with ideas and thoughts for blog posts that I hope to get around to sharing soon. Apparently the philosophical me has begun to emerge. This is good, as perhaps it means I'm finding my voice again. I will take that as progress. Something more to be thankful for in this week of giving thanks.
Hello interweb world! Looks like there are a few of you out there checking in to check on me. For the intrepid, here is an update. *grin*
I still seem to be tolerating the new chemotherapy cocktail pretty well. No nausea issues again, though some milder stomach cramps this time around in the couple of days following treatment. I did find myself a lot more tired the day of treatment and while still on pump this time around. Which is expected and a good thing because it means catching up on sleep. So there were some great naps and finally some solid full nights of sleep, all the way up to eight and nine hours even. Just one more step down away from being completely off the steroids, and I think that halving the dose this past week has made a huge difference in my ability for sleep.
They gave me an on-body-injector (obi) for my Neulasta shot on Friday when I got off pump. They want to wait 25-27 hours post-chemo to give you the shot. And as that would be on Saturday and the cancer center is closed, the option was to wait until Monday/today to go in for a shot, or get the obi. A smallish plastic device (---> pic) that they stuck to my abdomen, then after three minutes inserted a tiny cannula into my belly, and then 27 hours later started a 45-minute infusion of the Neulasta. Didn't notice a thing and something I will likely do again versus going to the center a third day during treatment week. After the injection is done, you just remove the whole thing and dispose of properly. They ordered me a sharps box just for these. I have quite the growing inventory of medical shite around the house these days.
One fantastic reason I didn't notice anything about the Neulasta injection was because at the time I was enjoying a performance of Beethoven's 9th Symphony with the Battle Creek Symphony and a variety of local choruses. One chorus includes a friend of mine who had kindly invited me to be his wife's date for the concert while he was up there making musical magic. We had a lovely dinner at Arcadia beforehand, got to all the catching up, and enjoyed a great performance. Plus!, I received a beautiful gift of a warm and purple knit collar. Happened to perfectly match my ensemble for the night and I am quite looking forward to it keeping me cozy through the winter months to come.
It will be two weeks from today before my next chemotherapy session. We have to wait ten days after the Neulasta shot, and that puts us right on top of Thanksgiving. Although this extends my treatment schedule, it does mean that I will have a solid two weeks of feeling straight up normal. And I'll have plenty of energy for the holiday with my family and all the decorating at both my sister's house and here with the Roomie.
Oddly warmish weather and some beautifully sunny days around here lately. I will be rather pleased if it ends up being a mild winter this year. I took full advantage of the weekend and spent a lot of time with several friends. I don't know if I've mentioned lately how completely awesome my People and my network are -- but they are pretty freaking great! A weekend with dinner and a movie, dinner and a concert, dinner and decorating, a shared walk in the woods, quality conversations, so much catching up, and I made it to the farmers market to boot. Taking advantage of every good day and every opportunity, this is my aim, my quest.
10:30 am
Three cheers for the Neupogen work-around. My WBC counts are super high, and the neutrophils are extraordinarily abundant. Which means we are a total go for chemotherapy treatment today. I've been hooked up for about an hour and a half now and the long two hour infusion has already begun. Today is going to be a short day as a matter of fact. Apparently since just two and half weeks ago, some new news has come on the scene about Avastin. That has been an hour and a half infusion on its own in these courses. But new guidelines say that it can be done in a 10-15 minute infusion and might even work better for the change. So that shaves quite a bit of time off my sitting around the cancer center.
The pre-chemo system settling drugs all went in quickly and without any hitches. A little foggy headed for the Ativan, but otherwise feeling okay.
11:00 am
Playing with the webcam.
12:00 pm
The infusions are finished and we're about to get my 5FU bolus and then hook that wonderful pump accessory up to me for the next two days. My ride is prepped to be here exactly when I'm all packed up and ready to fly home. And then we will see if the napping can happen this afternoon. I think I'm going to appreciate the shortened infusion days. A couple more hours at home versus hanging out at the center is certainly a better shift.
12:30 pm
Packing up and heading out. I'll get back to another post when I get around to it. Hope you all have lovely afternoons and evenings out there.
So the live blogging is on delay.
I hope everyone is excited to learn things today, because I'm going to be science-y and explain-y. For me as well as for all of you. Today's lesson will brought to you by the letter "S." I have chosen this one because "Science," but also mostly because of "Shite." Because -- Yay! no chemo treatment today, but also -- Shite! no chemo.
First thing on the agenda when you show up for chemo day is they take blood work to make sure your system is in good order and track changes from session to session. Apparently my white blood cell (WBC) count is practically nil today. The ideal range is 4.5 - 11.0 and mine is 1.7. Not only that, but my Neutrophil count is 0.2 when the range should be 1.8 - 7.7. Neutrophils are the most abundant and mature of the white blood cells and the first immune cells that move to infectious sites -- first line of defense. Not so abundant in my system today however.
This means that I am severely immunocompromised and likely at least moderately neutropenic. Remembering that chemotherapy is a full-scale system poisoning... it's not something they will do when your system is compromised past a certain point. The kind of fraked up thing about chemotherapy is that they are attempting to kill the cancer in your system without actually crossing the line into killing you and the rest of your bodily systems. It's a difficult balance to maintain sometimes.
This changes the whole way we approach my chemo treatment this course. (Quick reminder since I'm being super explain-y today: a course is 6 infusion treatments done every other week, takes about three-ish months.) During my first two chemo courses back in 2012/13, I had low WBC counts and neutropenic issues right before session number 5 each course. The first course they delayed that fifth treatment by a week. I had it in my mind that this course would be similar to the first two and we wouldn't run into the WBC count issue until session number 4 or 5 again. But here I am having to roll with the changes that keep coming with this recurrence.
The silver lining is that no one was awfully surprised with the news. It is not an uncommon thing when cancer patients have had prior chemotherapy that their system has a hard time keeping white blood cells up with a new chemo course. Apparently my body just isn't bouncing back and my bone marrow isn't producing quickly enough. Luckily there is a work-around. And I always love me a work-around. There is a drug, Neupogen, a protein form that is a colony stimulating
factor which will encourage/force my body to create immune cells. They gave me a shot of it today, and I'll go back for a second shot tomorrow. Then, on Wednesday morning we will do a new set of blood work and see if my system has a decent set of WBC. If it does, then we go ahead and do chemo treatment number 2 Wednesday morning (fingers crossed everyone!).
Since we are having the WBC count problem so quickly this time, they will treat me with Neulasta (a longer lasting version of Neupogen) the day after each chemotherapy session. It should help my system bounce back each time so that we don't have any more delayed sessions. They may also decide to lessen the dosages of some of the chemo drugs in future sessions. Roll, roll, roll with things.
That's a lot to absorb, and maybe more details than needed. I've never been afraid of a bit of verbosity. And I'm certainly the type of person for whom details and knowledge bring empowerment. So for those of my friends who are the same (and I know you're out there!), this is all right up your alley. If all goes well this week then there could be super-not-exciting live chemo blogging happening on Wednesday. And if not, then there will at least be another update here.
It's been a dual dueling working laptop afternoon on couches with my sister all afternoon. We've both been working and chatting in the spaces between and soon off to get some take-out and a movie for a relaxing evening in pajamas. Not such a bad end to a compromised day.
How are you doing; how are you feeling? These are the constant questions from those around me. And I'm supposed to be keeping you all apprised of that here in this space. That whole regular updating thing still not quite a thing. Ah well.
So... the answers are, pretty well for the most part. Toleration of the first chemo round was really pretty good I'd say. Only one difficult night with tummy issues in the first week, and never any real nausea problems. Absolutely a good start for this course. "Off" week this past week has been great. My energy has been back to normal and other than some cumulative effects from continuing the steroids, not a lot of physical issues. Stepped down on the steroids again a few days ago, and will be off completely by the end of this month. Looking forward to that!
Keeping busy with friends and family of course. Attended an SCA event yesterday on the east side of Michigan and got some seriously great quality time with some seriously great quality people. Many, huge, and loving thanks to all of those who kept me company during the day. My love and energy battery is fully charged and I have so many great conversations to mull over while I sit in treatment tomorrow.
Yes -- round number two of chemo is tomorrow. The live blogging shall commence. Pretty much they all look and sound the same unless I get some exciting thing in my mind. Though I tend to be pretty brainless for most of those hours. Perhaps the point I am trying to make is to check in at your own mental peril (or complete boredom) tomorrow.
Since we have broached the subject of mental peril... and I've named this post Head Games (in anticipation)... and in the continued spirit of being an open book... and having little pride or shame left to worry about... I'll be completely honest here and say that it has been a harder mental game this time around. The recurrence is different with more factors in play and less options on the table. After two solid years of being clear and making life as I wanted it to be - including one of the best summers of my life this year - it has been a difficult transition back to patient mode.
The last six months have brought a lot of good changes into my life. By July I had fully found my Self and Center and was hearing my own inner voice above all others. Some daily meditation and time and self-kindness had placed me in an excellent mental and emotional space. The last six weeks have brought chaos and a lot of difficult changes into my life. However, I feel like I could not have been in a better place from which to come to these current weeks. Unfortunately those daily habits, including self-kindness, have not been such daily habits in the last few weeks. The past few days have found me finding the time for myself again and recognizing the imperative nature of this.
Being a cancer patient removes a lot of control from your life. Although I can be an active participant in my treatment decisions, and my own most-informed and best advocate for myself in these choices, there is a lot of just showing up and "doing the things." And there is just *SOOOOOO* much waiting! There is this nebulous space of unknowing that you have to learn to exist within. We did the brain radiation -- but won't know if/how it worked until we get a new MRI scan. That's still weeks away, and then there will be the week of waiting for the results after the scan. We are doing chemo -- but have to get through three months of it before we can know if/how it worked and we get a new PET scan. Then the waiting for those results for a week.
I can control what I consume and how I treat and move my body when it is up for exercise, but the rest of it is just riding the waves of whatever is happening on a given day. My schedule is only so much my own with the every other week chemo sessions. Any plans made need to be recognized as changeable. And so I awake each day with ideas for my day, but not necessarily the ability to follow through. I must be accepting of simply flowing like water around and through the days. A sense of control must give way to self-kindness and allowance. These are the subjects of countless platitudes and memes that swirl around the internet. Ideas that we all love the sensibility of, but rarely have the fortitude to put into action. And even in a situation such as mine, with optimism and hope as my sidearms, it is hard to stay on the sunny side of the street all the time.
This is another time of growth for me; that is what I have to come to understand. There will be growing pains and questions and it will be challenging. "It is what it is." This is a common phrase of mine since cancer first came into my life. I cannot change or control the situation. I can choose how I live within it. So it has been hard going lately in my mind and my heart. But I am stepping up out of the murky muck and choosing to keep my head turned again toward the dwindling fall sun.
Right now, this very moment however... the sun is shining upon me through the window. The squirrels and birds have been frolicking about the deck seeking acorns and any other edibles. The last sips of tea are waiting at the bottom of my favorite and most beautiful tea cup. There are simple chores to be completed about the house which will give me a lovely sense of satisfaction. And my sister will be here to keep me company through the next few days. There is much good in my world as long as I keep my eyes up and open to see. I wish the same for all of you as well. Who is to say that a little rose-tint in your glasses ever did too much wrong in the world?
