Family, and platelets, & Thankful again for blood donors

Just wanted to fill you in on my day, I am post chemo carboplatinum day 4 and post chemo VP 16 days 4 3 and 2, and post chemo Neulasta day 1, and I started leaking blood again today, from low platelets and from the radiation I had gotten last week and the week before. Plus I have an icky cough, and with a very low white count (1.2) and a likely spine fracture from one of the more than 20 spine mets that REALLY hurts whenever I cough, it all added up to needing to be in the hospital getting more antibiotics and IV platelets. (time out – take one second to thank GOD and my miracle platelet donor for the gift of life, could you???) But anyway, I am home now, Sam came home for the afternoon to see me, my parents are still here from Kalamazoo, Danielle and family are going to manage faith formation for me (obviously I can;t do that tomorrow) and Danny DeHority tied for first place in the regional National History Day competition, coming home with a really nifty medal that deserves its own post (along with a link to the winning website that he coded, So that has to wait until tomorrow.) Please pray for me. This cancer is just growing so fast, it scares me and has become very stressful for my whole family. Thanks,

What’s Up? 27 February 2015

So what is new? Lots. Sorry to be so totally delinquent with the updates, my family lives here with me every day and even they feel that way, it’s just been crazy.

Basically, a couple of weeks ago they did MRI which showed way more cancer way more places. In just the few days it took to arrange the MRI with contrast to clarify all that,the cancer had spread. Lots. So they stopped the drugs that weren’t working and decided to try http://en.wikipedia.org/wiki/Carboplatin along with another old but good drug called VP16 ( http://en.wikipedia.org/wiki/Etoposide )

And while we’re at it, remember that surgery I had to get chunks of tumor to send to Foundation One to look at mutations? Those didn;t get actuallly sent, or they got lost, but there was plenty of spare chunks of cancer sitting in the lab so they sent more. Maybe results by the end of the week. Meanwhile the wound is NOT healing. Two nurses and a large dose of IV narcotics let them repack the wound today,,,, ugh. They will look at it again today. And in other news, you know that pretty much 100 % of my vertebrae have cancer…. one crunched and broke today, due to a cough from a respiratory infection (for which I am now on antibiotics…) and the whole thing is complicated by all the steroids, which not only prevent healing but cause diabetes. Two early checks indicate that I may now be diabetic. Pancreatic metastases on MRI might should have given us a clue about that, too….

and it is 338 AM, I am going to try to get some sleep despite all this stuff to worry about. I love you all, please keep forgiving my lack of correspondence…. I will try to do better. I promise.

update – Friday, 20 February 2015

About 2:30 AM EST.

A long overdue update. So sorry. and right now at 153 AM the update won’t be very long, I promise. But look a few photos down and you will see a t shirt that says I am still alive and a mug that says I got up. Well, there you go. The general concept is that the cancer is spreading really fast, and the numbers in my blood keep going up to confirm this, we’re not just depending on hurting and falling and counting missed words and missed steps to be objective. We can simply look at the CA 27 29 number go up 60 points in two weeks (heck, for years it never even GOT to sixty points!!!!) and realize that our situation is kind of bad. On the other hand, I took the wheelchair to sunday school the other day and then I was able to go to Mass right after, with everyone else. It was great, those big boys filling up those pews. But anyway, we stopped two chemos, kept two chemos (one of which I coulnd’t get today because I made the doctor on call too nervous) and we add two maybe Monday? One is infused every 21 days, the other gets overlapped – days 1 2 and 3 and then the whole cycle with the two of them continue. The concept is to kill off all the vulnerable baby cells like cancer cells all at once, BAM. Then about 2.5 weeks later when they have grown to exactly when their own growth equipment and centers are totallly ready, BAM, we get those too. And the hope is that they will eventually help because they will get tired of the BAM! just like I do. Oh gosh, a few details for those who need them – january bx still triple negative. January wound still open and being packed with iodoform gauze. Seeing new palliative pain person, who is very smart and fabulous and makes me feel really old. So that’s enough for now. Too tired for photos but I have some awesome ones. maybe tomorrow. Cancer makes everything but procrastination harder.

Spinal Tap, pt 2

10 Feb 2015 – about 6:30 PM ET

Just a quick update…. had radiation therapy, then went to interventional radiology, where they did a spinal tap and got plenty (according to them I couldn’t see, they were obviously working behind me) of fluid, to be sent for cytology, chemistries, etc. I have been absolutely faithful about being horizontal and still since. No signs of bleeing, leaking or spinal headache at this point. Boys are on their way to violin w sara.

Remember when “Spinal Tap” was just the name of a band? 1984?

10 February 2015 – about 9 AM ET

Tuesday morning. Adding a whole new layer of diagnosis and treatment…. we have done big surgery, little surgery, radiation, oral chemo, IV chemo, traditional chemo, hormonal chemo, biological chemo, and more and again more and again. This morning we start the whole “inside the totally separate circulatory system of the cerebrospinal fluid system” thing with a spinal tap to see what cancer cells exactly are floating around, having fallen off those ridges of dural and leptomeningeal mets. I am pretty much a wreck about both the procedure (want to get stressed? Look up “lovenox and epidural black box” ) …. and the results. But everything is set for the kids and violin and meals and all…. I just have to get through it and await the results…. meanwhile I am still alive, I got up, and I have brand new hand knit lace prayer socks sent by a dear friend who understands panic….

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Minimalist Trip (+ a little more)

on kawara (1932 to june 28, 2014) had the most timely (and that word has HUGE significance for the iboth the theme of the installation, his life work, and my adventure wth Sam DeHority) at the Guggenheim museum in NYC. Despite our resolve not to add to a minimalist but incredible itinerary, we went out this morning and thought and learned together …. joy, joy, joy. It took almost two hours for me to understand the relevance, and how it wasnt just paintings of dates and files of postcards. Wow. But no more added on adventures lest we possibly get over tired or over hurting for late afternoon Tea at the Ritz or our date on Broadway for Lion King.

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