After several upsetting, stess-filled, and sometimes nightmarish weeks, I feel like I'm back.
...and I find myself almost afraid to say anything, lest I jinx things.
I've been pretty verbal about everything going on over the past few months, and each time I get too happy or encouraged, that happy rug just gets yanked right out from under me. I really hate when that happens...sick of it. So that whole "jinx" concept keeps creeping into my thinking.
I've always said that I don't believe in luck and am not superstitious, but maybe I'm wrong. I think I do have superstition issues. What is it about humans that we tend to do things like knock on wood, cross our fingers, wear our lucky underpants, or avoid things that might "jinx" us? What the heck is a jinx, anyway? I'm a Christian, for goodness sake. I believe in God, in prayer (not the "Dear Santa" kind, either), and in how Jesus Christ taught us to live. Yet I still find myself afraid to say or do certain things in relation to what has happened in the past when I've said or done certain things.
Got that?
This is how I'm thinking...
I've celebrated a variety of things concerning the treatment of this cancer in earlier blogs...and almost every time I celebrated the "good news", things later went south. Pride goeth before the fall and all that, I guess. Over and over that rug has been yanked, so, oddly, I've reached the point of being afraid to say anything. Now that is superstition, if it's anything.
I've had so many twists and turns along this journey over these past 6 months, and almost all of them have been negative. I am more comfortable being positive and optimistic, so in light of these past twists and turns, I find myself feeling more comfortable in silence. I am not comfortable with the negative, to put it lightly.
It brings to mind the days when my boys were babies and I would, ever so carefully, put them to bed and then tiptoe out of the room, trying to be as silent and stealthy as possible. Or maybe a better analogy is that of waking a sleeping giant. Shhh...do NOT wake up this giant.
Right now, I feel great (until chemo next week), have been healing nicely from surgery, am eating healthier than I've ever eaten, am enjoying daily walking and talking with God (and Cleo), am sleeping well, and am educating myself on every possible thing I can do to beat triple negative breast cancer. That's a lot of positive and, I admit, I feel slightly uneasy in putting those good things in print. Please let this rug stay right where it is. No more falling down.
Thank you for your prayers, encouragement, kind words, and unlimited love. That is one thing that has always been positive. You all are the best and there is nothing that can change that! Praise God!
Oh, and...
Knock on wood.
It's funny how this time last week seems like a decade ago. Years. Ages.
I am a different person than I was then. Sickly and weak and dizzy and sometimes queasy. I don't like this version of Patti, in fact, I'm sick of her.
I had my first round of my newest chemotherapy regimen on Tuesday at Highland's Oncology. That evening I felt pretty normal and was so happy that I had not been given that bag of Benadryl that came with my three previous (and failed) rounds of TAC. This round meant I spent 8.5 hours at the clinic with my precious son, Sean, my chemo buddy. This was his first experience and his first observation was something to the effect of, "This makes me think of 'Breaking Bad'". He was a great companion and didn't grumble once as our day lasted much longer than we thought it would. He waited on me when needed and was all around great company. I love that boy.
During this round I was given what seemed like endless bags of fluid, including Zometa (for bones), Emend (for nausea), Gemcitabine (for cancer), Cisplatin (for cancer), and plenty of saline before and after to flush things out (since Cisplatin can possibly damage kidneys). I think there were other things thrown in there, but I can't recall what.
This was similar to the regimen recommended by Dr. Nagourney with Rational Therapeutics, following my tumor profiling back in November, only, apparently, quite a bit stronger. I went in eager for the big guns and did not hesitate when I learned this would be considerably stronger.
I held my own until about 10:30 the next day...when the train wreck happened. Seriously, I was expecting a slow decline into feeling crappy, kinda like I did with the TAC, but no such luck. Mid morning Wednesday - WHAM! I went from cleaning the kitchen to, five minutes later, heading for bed and calling for help. I was rocked with severe chills (as in entire body trembling), major nausea, and complete weakness. I crawled in bed under my down comforter, fleece blanket, and anything else I could find, and remained there for the day, barf bucket at the ready (which I never had to use - I guess that was the extent of the anti-nausea meds...I kept my food down.)
Thankfully, between my two sons, someone was here all day. They were good to check on me frequently and make sure I didn't need anything. JC later told me he was pretty frightened by the whole thing. I guess it looked like mom might not make it. But, of course, I did. I was taking the Zofran that had been prescribed and later added another anti-nausea med. By that evening I was running a decent fever and David called my oncology nurse, Shannon (we kept her phone busy that day). I took some Tylenol and managed to sleep most of the night.
Since then I have not reached the same heights of sickness, but have been consistently weak, feeble, and dizzy (yes, dizzy). I am counting this as day 4 following chemo and have read that Cisplatin can cause nausea for 5 days or more (Dr. Beck informed me that Cisplatin has been known as Sickplatin...an excellent nickname for a hideous drug). Each day I hope will be the last day of this sick feeling and it just seems to be consistently bad...though nothing like Wednesday. This has to end sometime, right?
Next Thursday I go back for more, though fewer, drugs. Gemcitabine only...should take about 2-3 hours. I am praying I will be stronger by then and it will affect me much more gently. I am also praying that my bloodwork comes back decent so they CAN continue this regimen. As rough as this has been, I'm a bit worried about that. I want to keep going.
So, this first week of 2011 has not been the greatest. Maybe it helps that I barely know what day it is. Obviously, I have not started back to work and I do not know when that will happen. That's an entirely different category of concern. I just keep imagining the future when I am healthy, hearty, and strong again...back at work...back to normal...and able to relate to those who are suffering through hell on earth. It's a gift I never wanted, but one I expect to someday be thankful for. I can do this.
"I can do all things through Him who strengthens me." Philippians 4:13
(Yep, that's the plan...I CAN, and will, do this, but not alone. Never alone.)
Yes, I've been absent. Took another break from the blog and attempted to get my head on straight again. It was tending to twist and warp. Between Christmas and surgery and moments of complete panic, blogging was not at the top of my list. I'm still struggling somewhat, but life goes on, and therefore, so do I.
Last Thursday's surgery went fine. The folks at North Hills Surgery Clinic get extra points for being extremely kind and caring. Considering I was there so briefly, I really felt well cared for and even a little bit babied. Came home Thursday afternoon and had a very nice nap. That nice nap is a very good memory, since I haven't slept well since then.
As far as the surgery went, Dr. Cross cleaned me out as best he could. He said there was a lot of scar tissue he had to work around, but took whatever he could to leave me "clean as a whistle". He did have to take a wee bit of muscle, but other than that, got every area he could find that might have lymph nodes. After all that, the pathology report showed only two nodes, both testing positive for cancer. Two nodes found this round, three the first, adding up to only 5 axillary (under arm) nodes...way less than the normal person (normal is 15-30 nodes), but not unheard of (I Googled it, of course). I told you, my body is a freak of nature.
The cancer was contained within these two nodes, though, so nothing was spreading in the immediate vicinity...also known as clean margins. However, being in the nodes does mean there's a pretty good chance the cancer is moving elsewhere. Because of this, and since TNBCs more often than not have early recurrences (within first 4 years), we will begin chemo again as soon as possible.
I am, again, healing fairly quickly. My left arm is sore and feels like there is something tight running from armpit to wrist that prevents it from reaching, raising, or staightening. I am once more, unable to sleep on my left side and dealing with a surgical drain.
I did get results back from abdominal, chest, and bone scans. All showed clear, except for the chest scan, which showed the lymph node that sent me to surgery last week. I requested a brain scan, since I keep reading that it is very common for TNBC to metastasize to the brain. I received the results from that on Monday. It seems I DO have a brain, and that is all. So praise God for that. I cannot explain the feeling of fear that comes from not knowing what this evil disease may be doing in my body. It's great to know that, at this moment, I'm clean and clear.
Backing up a bit farther...Prior to surgery, we met with the oncologist last Tuesday and got his take on the whole thing. I arrived with my long list of questions and he was great to patiently let me ask these one by one (some intelligent, some kind of nutty - but I had to ask). He even agreed to some of my queries about treatments and alternative/additional medications to be used...things I had read. We will be adding Zometa to the chemo cocktail to strengthen my bones, which may help keep this from metastasizing there. There is also a low dose oral chemo drug that I will take when I do radiation that may help the radiation kill more errant cells.
Of course, I asked about PARP Inhibitors, the up and coming range of drugs currently in clinical trial and showing some promise for a subset of women with TNBC. He said there were many clinical trials currently in their last phases and one drug should be approved within the next three months. When I read about the "encouraging results" of this drug giving women with metastatic TNBC 12 months instead of 7 months, it doesn't bring me a lot of comfort. I don't like thinking in terms of months, unless you count how many months until this ENDS.
As far as my chemo goes, ideally it would begin after my surgical drain is removed, but I think they are considering beginning chemo while I have the drain, considering the aggressive nature of this cancer. If this is the case, it will effect how I heal from last week's surgery (not in a good way). I go back to see my oncologist tomorrow and will find out then.
Chemo will be three weeks on (1 x week), one week off, for four cycles. If I tolerate it well, he may go four additional cycles. That's 8 months! Then 6 weeks of daily radiation treatments. I have a feeling that 2011 is not going to be my favorite year.
I'm stressing about work, substitutes, sick days (they're now officially used up), sick bank, health insurance, things I so wish I didn't have to think about. I want so badly to return to work, while at the same time fear dealing with the stress of coordinating non-stop doctor appointments and chemotherapy (and it's related side effects) with a 7:30 - 4:00 (or later) work schedule, lesson plans, sub plans, and the myriad of other stresses that go along with teaching over 30 classes a week at two different schools. Can I do this? Right now, I do not know. I really WANT to, though. I want normal and everything that goes with it. All that grumbling I used to do when life was normal...what was I thinking?
What I have to keep reminding myself is that right now, at this moment, my body is clean and clear. I know there are bad cells floating around (as there are in all of our bodies - did you know that?), so my goal is to do what I can to keep myself clean and clear through diet and exercise. I miss my sugar and fat, but compared to life and health, it's a small price to pay. I am working on becoming as alkaline as possible.
As you can see, I continue to need prayer, and lots of it. My communications with the Almighty have dwindled, for some reason. I guess I am just weary and not really happy with how He is answering me, so why ask? I know that's not right, but that's how my mind is leaning. I need to work on that.
I think lately my biggest enemy is my own mind. The report on my brain MRI came back with good results, but it didn't show all the darkness and doubt that keep swimming around in there. I need two things to leave me and never come back: this cancer and these frightening thoughts. Please help pray them away.
If you've made it through this depressing post, I thank you and I also apologize for being such a downer. Hopefully the next one will be better. One thing I've found, when I'm down there's only one direction to go.
Right now, I think it's time to put on my sneaks and let Cleo take me for a walk. It will be good to air the head.
I know, I know...I've been MIA. I will update more soon, but just so you know, I'm okay. Had a lovely Christmas with family here and again in Southern OK. Hardest part was looking in the eyes of those I love the most and seeing them tear up. Why does Christmas bring out the emotions in us? Christmas = family, memories, traditions, love, salvation, eternity...all such emotionally heavy words that help turn on the tears in so many.
So...let me set things straight. This is NOT my last Christmas with you people. :)
I am doing fine and recovering from surgery. I'll try and give a more in-depth update soon, but for now, know I am fine and feeling stronger each day (mentally and physically). Thanks for your sweet notes, comments, texts, and calls.
Love to you all.
Patti
Dr. Cross called this afternoon. The pathology report came back positive. The lymph node is malignant. Surgery is a go for December 23rd; I'll know more details on Monday. It will be outpatient and I'll be home and on painkillers that evening...and probably for several days.
Ho-ho-ho.
I did ask if we could still plan to drive south to see my in-laws on Christmas day, returning the next day (not our usual norm, but neither are most things this year). He thought that might be fine, as long as we stopped every hour or so and I got out and walked around. Don't want any blood clots. He said he'd be available and I could call with any problems.
As far as surgery goes, he will be removing a lot of lymph nodes. This is called an axillary lymph node dissection. He said maybe 15 to 20 will be removed; it all depends. Said he'd know when he got in there. I want them gone, gone, gone...and ASAP. He agrees with me. Only thing is, I will now be at a MUCH higher risk for lymphedema...a very unpleasant and lifelong side effect of this type of surgery.
Many of you are asking why this wasn't done in the first place. Well, in the first place, during my mastectomy, they did something called a sentinel node biopsy. This is where they shoot dye into the breast a few hours before surgery. This dye goes to the sentinel node, so the doctor knows which one to remove. He removes the nodes that the dye highlights, a pathologist checks then and there for cancer, if none is found, that's it. If they find something, more nodes are removed. (In my surgery, the three nodes removed were clean and clear. No cancer.)
They then take these nodes to the lab and do even more in-depth testing to make sure there are no cancer cells hiding there. If this were the case, I would have been back pretty quickly to get more nodes removed.
I vividly remember the happy call I got from Dr. Cross telling me my nodes were clear. And I have that lovely path report saying they found "no evidence of malignancy" in those same nodes. So, the fact that this lymph node has now presented with cancer is most disturbing.
Again, I am the woman in that vast minority whose body doesn't do what they thought it would. They should know by now that this is how my body rolls. Nothing has gone as planned. My body is a freak of nature. (We've all known that for a long time, haven't we?)
I asked him about chemo and how soon that will happen. He's thinking it's possible that I will start the week following surgery...about two weeks before he'd normally want it to happen. He said, and I agree, that we need to hit this hard and fast. (Considering my last chemo - the one that didn't work - ended Sept 30, I think it's too late for fast.) After chemo, six weeks of radiation will follow. I'm ready.
I am trying to visualize this time next year...when this is all some kind of bad memory and only lends to my storytelling. I know I will be dealing with cancer for the rest of my life, though. I'm just praying it's a long enough life that they find some way to deal with triple negative breast cancers and can make my life last even longer. I have way too much ahead of me that I do not want to miss. Pray for the researchers, scientists, anyone and everyone who is taking this seriously, sees the urgency to find a cure for this hideous and evil disease, and is doing something about it.
