Hello from “Bubble Girl”!

That’s right folks, today I am officially “Bubble Girl”! Sounds pretty fancy, huh?! Do you member that movie, I think it was in the 80’s with John Travolta, “Bubble Boy”? Anyways, I had some lab work done today and my white count is officially in the toilet. For those of you who don’t know, your white blood count basically shows your immunity or, in my case, lack there of. Don’t worry, it’s to be expected, but a little weird to see a 0.4 in the column where it should be 4.8-10.8 and had just been 3.3 Tuesday. I feel like I should make a pie chart or something with that information, but will resist the urge.

NeoStar catheter that goes into your jugular vein to deliver chemo, fluids and blood

So let me back up a little and bring everyone up to speed on how and why my white count is circling the drain and where we are on everything. Last Wednesday I added another accessory to my growing collection of implantable devices and had a “tunneled catheter” placed in my upper right chest. I thought I had been super sly by having my port placed under my left underarm/chest area back in May only to be put in my place with a fairly large tube about 4 inches long poked into my right upper chest and neck with three prongs at the end that look like the hubs of IV’s…I guess they showed me! It is yet another one of those procedures where they basically make you not care that they are poking this thing into your chest and burrowing/”tunneling” it up into your neck and inserting it into your Jugular vein. That’s right, more truth serum! I mean, will they never learn?! I have stopped feeling bad about it and just figure if they really want to shut me up, they will finally learn to just knock me out! All I kept thinking was “I can’t believe I’m gonna let this guy I’ve never even met before poke a hole in my Jugular and then they’re going to let me just be up and walk out of here!” I’m not a weenie but I do know anatomy and for those of you who don’t know what the Jugular is, it’s the big vein next to the Carotid artery in your neck (where you feel your pulse). I just kept seeing Neil’s bounding pulse in his neck and thinking “Ummm, OK….if you say so!” Quite the dramatic build up but all went well and a good thing too because this thing is going to be with me for the next 4+ months of treatment. I had tried to weasel my way out of it since I had my fancy port but apparently they were not too impressed because here I sit with the latest model of tunneled catheters in my chest. The deal is they need it for several reasons, the most important being the stem cell harvest itself where they need a large bore device to decrease the chance of shearing or damaging any of the cells during the harvest and also so they can give multiple things at once (blood, platelets, medications and fluids) before, during and after treatment and without them interacting. So my quicker showers, minus all the hair products, now involve ziplock bags, Press and Seal and tape. Sounds pretty exciting, but I assure you in this arena it is not! But it is always nice and convenient when you can shop for your toiletries in the same aisle as where you buy your garbage bags.

Speaking of shopping…being “Bubble Girl” also means ”Home Arrest” is and has been fully instated. The day after the catheter was placed I went in for my “Mobilization Chemo” which is why my white count has almost completely tanked and marked the official start of protective mode since my defenses are now down. The doctors had decided they wanted to do a higher dose version of a “Light Chemo” use to stimulate my stem cells since they were worried that my previous treatments may have taxed my marrow already and we need to collect double the usual amount for the two stem cell transplants. They reassured me that there may also be some potential “therapeutic benefits” to an extra round so hey, why not, right?!…it actually gets funny after awhile. I’ve also started giving myself twice daily shots to get the stem cells out of my bones into my circulating blood–it’d be a more fascinating process if it weren’t happening to me! Anyway, they may harvest the little guys as soon as Monday or Tuesday depending on my blood levels and could start the first High Dose Chemo in the hospital around the 13th/14th if all goes well.

So what does “Home Arrest” mean? Well it means no Publix, Target, Whole Foods, Church, Movies, Restaurants…, you get the picture. But I am able to go outside close to the house and away from people (still with a mask) and have taken full advantage of daily hour long walks and lots of time out on the deck. Yeah, I know, how cool do I look with my bald head on a baseball cap and a mask going for a power walk?! The stares I get are amusing yet humbling. I swear, just when I think there is not one shred of ego or pride left, another chunk is chipped away and I am humbled yet some more! Oh, it’s good for me, right? Why not get over myself a little more. It is an interesting perspective to know that you are exactly the same person on inside yet have people look at you like something is wrong. Thankfully wearing a mask for long periods of time is a very familiar feeling after working many hours in the OR. This new phase also means new diet modifications that require just about everything to be cooked except for thick skinned fruits and veggies to kill any potential bacteria. Our chef and I have been busy trying to get creative with ways to cram in as many nutrients as we can into the new guidelines. And, of course, lots and lots of hand washing.

Running is out with this thing in my neck/chest but we did get a Precor Elliptical machine off of Craig’s List to have when it’s cold outside and I’ve found several new inventive ways to do arms, legs and abs despite them trying to keep a good girl down! I know it sounds silly but the exercise part for me makes a huge difference and I know has and is helping my body heal…movement is good! It is quite liberating to have to try other things and this has forced me to be flexible where I was not before and to keep reinventing myself. I promise you, whatever it is that you think you cannot change, give up, go without or let go…you can and it really is that easy. It’s just a choice. I am getting up on my soap box here but this experience has been such a gift in so many ways and despite all of the above and all that has and will happen on the medical side of this, I am most grateful for the larger lessons it has and is teaching me. At times it has felt like trying to drink out of an open fire hydrant but always the water recedes long enough to swallow and before the next rush. This has created a space in my life to ask questions and look at things from new angles and do a “deep cleaning”. I figure while they do there deep cleaning with the medical stuff, I will do a deep cleaning of my own. I find myself in a space where I can look at the choices I’ve made, why I’ve made them, what I’ve learned, what I want to change, what I want to let go, what I want to keep and polish and the person I want to be. I find myself wondering when I decided “it” had to be hard or rushed or perfect or “wrong”? When did the “should’s” replaced the “could’s”? When did I forget how to play, to be quiet, try something new, to ask for what I really want, to say no or just to do something without having to justify it? Who gets to say when it’s enough? When is it time to really start enjoying? What really, really makes me happy? What feels right for me? Suddenly it’s as if I bought a gadget along time ago and I’m suddenly realizing I never read the manual. Content with modest, predictable results because that’s all I ever really expected or knew it could do. And now I stand in awe of the complexity and power of this gadget as if it is a whole new device with amazing potential and astounding, endless capabilities, yet it is the same one I started, only my view of it has changed, awakened to the it’s majesty. Needless to say, I am reading the manual and after that I’m going to read some more and then some more until I am an expert on how it works and I master it’s most amazing capabilities. So where’s this manual? Well, we each come with one that is Divinely given to us, you just have to get quiet enough to hear it’s script playing within you and then be open to follow it’s directions and signs. We’ve all gotten very good at learning the functions that don’t work for us and wonder why we keep getting the same crappy results in one area or another and just feel lucky when we hit the right button and get a OK or decent result. What if it doesn’t have to be that way? I figure you’re going to get results either way because the gadget (us) is powered up, so why not choose your results by following the instructions? I think it comes down to this: daring not only to listen, but daring to do something about it, to taking your power back and taking action. And with that, I will humbly step down off my soap box and wish you all a wonderful, beautiful weekend and, as always, send you much love and my deepest gratitude…

Alyssa

Special thanks to those who have provided amazing and unbelievably healthy and helpful meals for me and Neil.

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