I have to write in my blog now and get everything clear.  Please bear with me because my typing is terrible, and my thoughts are not only scattered, I can’t even count on their veracity.

 

For weeks in February I had been feeling physically and physicallly  worse.  I felt nauseaus and I couldn’t sleep.  I kept losing my balance.  But I thought I was rolling along alright.  Until Tuesday, March 10, a date I may never fully remember.  I found myelf  at Penn’s hospital in an ambulance and it took a lot of discussions with friends to discover how that had happened.  Barb, MJ, and, Jill were there, but I was sure I was alone.  I spoke incoherently if I answered questions at all.  A team of surgeons kept repeating that they were going to do a small procedure on me, but it didn’t make sense to me.  My parents would have to give their permission.  Finally I let the drugs take control of my body.

After I woke up I was able to gather more information about what had led to that situation.  My cancer, as you may know, is a distant metastisis to my liver.  I almost died the first time it spread because when the liver stops working, it stops.  This time, Dr. Fox was armed with a stent he could try, but it was pretty new and he wasn’t entirely comfortable.  It was really my only chance, though.  If the stent hadn’t worked he could’ve tried it one more time, and then my life would’ve painfully ended within weeks.  Thank G-d the first stent worked and my bili rubin isn’t far from normal.  I still spent a week in the hospital and worried myself and my family, but now I’m actually back on chemo, which is a great thing even thought it’s my least favorite kind. 

 So I still can’t get over how you come running to help the minute I need it.  I hope to be doing much better soon, but I’m not allowed to drive and my walking is so wobbly, I’m renting a wheel chair for now.  What help will I need?  Well, Ken is traveling a lot for his new job and I don’t know if I’ll always be able get a ride for Jonah to baseball.  It’s things like that.  I do need my boys to have these rides available.  If you’re interested in participating, could you send me an email or an fb message or something?  Then I’ll know who to call if I need something.

How is Michelle

Hi folks.  This is Jill, Michelle’s sister, guest writing on her blog today.  We know that everyone is hoping for an update on how Michelle is.  The answer is that right now, she’s struggling.  She’s currently living in a perfect storm of issues – still recovering from the radiation, the sinus problems, the negative impact on her liver from the long disruption in her chemo and the recent resumption of her chemotherapy.  She feels sick all over, and it has taken a drastic toll on her spirit. 

As terrible as all this is and sounds, we do not have any reason to believe this is “it.”  In fact, just the opposite.  Since she responded to the chemo so well in the past, we expect it to start working on helping her liver.  Once that happens, the nausea should lessen significantly.  Also, she is scheduled for a procedure at the end of March that will fix the sinus issues.  Between these two things and the extra useful rest they will provide her, we hope that within the next several weeks she’ll be feeling like herself again. 

She, however, is miserable now, and she has lost hope.  It’s not hard to understand this.  I’m inconsolable when I’m nauseated for an hour; I can’t comprehend how she’s been able to manage this long. 

In supporting her, I’ve been walking the line between focusing on the optimism we justifiably feel and being honest about her predicament.  I’m positive around her without blowing smoke, which she sees right through.  I know it hurts and scares her to see so much fear in the people who love her.  My approach has been to take care of the things that she needs taken care of, encourage her to take small steps that might make her feel better, like a shower and a change of clothes or movement around and hopefully outside of the house.  I try as hard as I can to make her laugh.  

As her sister, I need to say how incredibly grateful I am to all of the people who love Michelle and are supporting her in any way through this.  She’s a special person, which is why she has such a large circle of loved ones.  I’m looking forward to better times when the pain has subsided enough for her to regain her focus on all the wonderful people in her life.   

What's around the corner?

All this time, I've felt there's been limited optimism.  Now it seems to be on the wain.  I don't go anywhere anymore anymore, and I think it's because my body is going to waste.  Ken has to keep convincing me I'm not dying, and my mom, who is doing well in her hospital doen's admit to worry. Would be nice to see Lori, but oh well. 

I would like to eat.  And relax.  We'll see.  I'll check tomorrow, I guess.

blogs

I don't know quite what I'm writing lately.  I've been feeling like crap lately.  I need to apologize to all those who come here for valid information.  Worse, I have to apologize for some help.  Along with the wonderful news that Ken has a new new job, comes the realization that I suddenly can't drive.  Seriously.  I'm not allowed to drive out of the state.  And Ken can't, so how do I get to Penn.  I'll call the ACS to find out, but then you might be my next step.  How stinky :(

Well, that's my post :(

Michelle

Channeling Charles Dickens

Well, now my damn sinuses have completely irritated me.  I had my sinus CT scan, had my abdominal CT scan, didn't have chemo because of minocycline, which is, depending on your vantage, either the antibiotic du jour or the antibiotic du forever.  At any rate, minocycline makes me nauseous and I am not a fan.  It has helped this sinus infection, however.  Or so I thought.

Dr. Fox told me I could/would not have chemo last Wednesday because he wanted me to finish the minocycline pills, and I STILL have 7 left.  Civia and I went from Penn to Wegman's, where we bought probiotics to hopefully combat the antibiotics.  I wish that worked better.  So I'm not eating much, certainly not enough, and the bathroom at Parkway is nowhere near the gym.  I'll keep going, and though I love watching Jonah's team win these last second basketball games, I'd love them to keep their first half momentum going once in awhile. 

Boy, I do know how to get off track.  Let's see, off chemo ... Oh yes.  My tumor markers are up about 25 points and according to my abdominal CT I am doing worse, but Dr. Fox thinks I'm still better off waiting until next Wednesday, the 6th, to get my infusion.  I'll be finished the antibiotic by then, but there might be another reason for a hold-out next week.  I have an appointment on February 12 with an ENT surgeon because my sinuses are ALL messed up and I need two surgeries.  Both outpatient.  Apparently I'll feel so much better afterward, even my mom is acting happy for me.  Here's what's officially wrong with my sinuses.  I have a stone, like you get in your kidneys, but in a gland.  It has to be removed from the right side, and it explains the jaw pain and headaches, etc.  The other problem is that the infection has turned chronic, which somehow is another way of saying permanent, but I only have a cursory understanding of that.  So one surgery to get rid of the stone, the other to I guess scrape away the infection.  This is a nice diversion from breast cancer.  Or whatever. 

Last night I made the mistake of going to the Metastatic Breast Cancer Network site.  I thought it would be a safe place, but no.  I ended up with visions of my family and friends mourning for me at my funeral.  You'd think the MBCN site, which is for people like me, would be a safe place @@.

Today was clearly not shaping up to be a great day, and then Jason came home from school with news that he got an A in his English midterm.  An A!  Last year he was in the hospital and didn't take midterms, and my only concern was that he'd take his own life if left to his own devices.  This year he got an A.  I'm proud to report he is suddenly caring and doing much better in school.  He actually studied for these midterms!

Today.  It's a great day!

January

It's actually Martin Luther King Jr.'s birthday today, but the kids will have their school holiday on Monday.  I remember celebrating it on January 15 when I was in school, and it may have changed to a national "Monday" holiday when I was still in high school.  I'm stalling.  The things that I want to write are green, and nine days after the most incredible day I don't want to write green, ugly stuff.

Nine days ago I had people treat me like a big star.  I know what it's like to be treated like a VIP.  It rocks, I hope you all get to experience it, especially for something like a birthday.  I hope Barb and Tom, who are are so remarkably generous and selfless and organized and energized, get to find out how much all they do means to others.  Renee, I love you!  And my email loop, my dad and Libby, everyone who came from all over, including silly Laura N. who came from Philly with a cold and wouldn't come into the house.  And all the people who smiled at me when I faced out from my birthday cake, it was the most amazing thing to see.  I wanted to frame all of you just like that!  Thank you for bringing delicious food, but of course most of all for being there. 

For that day I had limitless energy, I could stand the whole time, and I felt no pain.  My face even seemed less swollen to me.  But it all went so fast and of course I didn't have nearly enough time to spend with anyone, which made me feel guilty on a few different levels.  So I was feeling guilty for the people I had invited and those I'd wanted to invite and couldn't, and when I said good-bye and left Barb's I needed some quiet.  The next day, when I sadly watched Sally and Renee take their luggage toward departure terminals, I sighed, because you never know when you'll see people again when they leave for home on airplanes.

So I slept for a day, otherwise complaining about this miserable sinus infection, and then I headed to Penn to jump back on the chemo local (wouldn't ever call chemo an express line, that's for sure).  I ended up NOT having chemo once again, as Dr. Fox decided he wants me to have two more weeks off.  He called it a new plan, but it's one time I have to say I'm a bit concerned about that choice.  I know I just had rads a couple weeks ago, but shouldn't I be continually treated with meds?  Dr. Fox acted a bit blase about the whole thing, almost like he wanted to make sure I wouldn't get concerned.  Which, of course, had the opposite effect.  Still, I was feeling sick and ooky, and didn't say very much.  I have an abdominal CT scan and chemo scheduled for the 23rd, so for better or worse I should leave the Perlman Center that day feeling like good old patient me.

Update's not over:  I would need a bigger blog to complain sufficiently about my sinuses.  So my mom found me an ENT (the woman should just become a medical directory, seriously) and got me a quick appointment for last Thursday.  I headed there, only to discover traffic everwhere on the road to Jefferson Hospital.  Cars had flipped on the Ben Franklin Bridge, cars were broken down on I-95.  And I realized as I miserably waited through it, I'd forgotten my ubiquitous water bottle.  By the time I got to Jefferson they brought me water and a vomit pan.  Thank goodness the water eliminated the need for the pan for once.  The nurse sprayed minty stuff into my nose and it cleared out a lot, nice!  Then Dr. Rosen came in with this giant scope thing and I was supposed to relax?  It hurt.  So my next step is a CT scan on my sinuses, too. In the meantime, I'm now on my third antibiotic and I'm still waiting to experience any relief. 

It's amazing how you can have a thing like cancer that runs willy nilly all over your body and you can generally go through life with energy and passion.  But get some gook in your nose and you're dying.  Which is how I feel, a bit.  I'm dizzy and tired and my muscles are terribly weak and I don't want to do anything.  Those of you who think you shouldn't complain to me because I'm going through a more terrible illness, picture me sitting here with one box of empty tissues that I'm filling with disgusting tissues from the newer box.  Because Molly takes all the ones I pile into the trashcan, they're a delicacy to her.  And I'm miserably nasal.  And the crap is green. And it's ugly.  And even though I know I'm not, I feel like I'm fading from the earth because of this mess.  You might be able to relate to this ...

2013 LOVE

Bear with me, I'm not sure exactly what I'm doing here at 11:28 pm.  I can tell you I just spilled my saltwater mixture while gargling with it.  How thrilling and stupid and current. 

I finished radiation yesterday.  I had 15 treatments on the table at Hahnemann, with this netted helmet thing.  Over time the helmet didn't fit any longer and they were shoving it on me, asking if I could handle it.  My head looks like a giant balloon about to separate from Earth.  It's round, kind of purple, and looks nothing like my head.  My head, which is now completely bald, probably permanently, and covered with weird spots.  I can't say this cancer thing is improving so much.  My mouth is so sore I can't taste much of anything, but I keep wanting to eat.  It's so unenjoyable.  But I keep thinking Chinese food will be incredible. 

Riding to Hahnemann five days a week was interesting.  I couldn't stop doing things.  Every single day, I felt like I had to make some sort of stop in one direction or the other.  In the three weeks I had radiation, Jonah's bedroom went from bright yellow to green, white, and Phillies red with a Citizens Bank feel (I hope).  I baked three different kinds of cookies, a couple appetizers, and made a ginormous vat of chicken soup for my sinus infection.  I've made cornbread twice from scratch.  I ran out of gas for the first time.  I had my "last" visit at group therapy, where I cried my eyes out to the psychiatrist and ended up having a second LAST visit at group therapy, where my 18-year-old friend said he thinks he personally would love having me as a mom and doesn't understand why my own kid hates me so much. 

She's making me so crazy, who needs brain cancer.  I can't make sense of her, so I just keep running back and forth in her life making a bigger mess.  I try really hard to stay out of her mess, I do, it just doesn't work.  I love her, so I make an ass out of myself everyday.  It doesn't help that I AM sort of crazy, that I see things, literally, that aren't there and have to make my mind make sense of it.  I lose the right side or pages flip repeatedly, and I miss reading.  I haven't even tried to read a book in two months.  But as for her, is she so unreasonable?  She's nice to other people, and she's got that very nice boy who rides his bike here from Jippip.  And she eventually did get in the college apps, and the stuff she's asking for isn't bad, like the music department Ohio trip and a high school yearbook.  I think if she wasn't trying to smother me, literally, or if she didn't wish me dead on a daily basis we might not be in bad shape. 

I think the key right now is that there's no way I'm making sense.  Just read this.  There's no sense and I'm not making any come out of the blue, that's for sure.  So clearly the cancer and Allison are still in my brain.  The radiation is supposed to continue to help for like two more months, though.  Then Allison turns 18.  How do I make any sense of that?  Do you think my brain will somehow take over and protect me like it used to do? 

I'd really like to live to 2014.  I'd never even imagined such a year occurring before, but if I don't make it, I won't see any of my kids graduate from high school.  It's not just 2014, it's 2015 when Jason graduates, and 2021 when Jonah dons the gray gown.  So I have to figure out how to get healthy.  I've made a couple New Years' resolutions, in fact:  I'm going to get  rid of this sinus infection, even though it means taking two antibiotics at once.  I'm going to call Dr. Miller in the morning and do this.  I'm going to call the Y tomorrow and get the free cancer membership Jill looked up for me.  Then I can swim for three months and I also get a personalized class or something sometimes, and the whole family can go.  I have so much muscle weakness from the radiation (and steroids, according to Dr. K), I can barely carry a gallon of milk into the house from the car.  In November it was nothing but fun to walk four miles outside, now I struggle to leave bed.  I'm going to finish my lovely cherry sours and then avoid sugar forevermore.  I should stop eating chocolate chip cookies, too.  Hmm, I might start this resolution next week.  But I will start next week, that's the trick.  I do have my next appointment with Dr. Fox, so I will soon have my bone shot and my chemo and my next abdominal CT.  I guess that's not a resolution, because it's not like there's a choice.