Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, October 31, 2009

Jon and I thought we'd kept our piglet/pooh joke far away from Xander until, after we got through with a big laugh and the guys are going to play video games, X says, "Dad, if I sneeze will you pause the game."
"Yeah" Jon says, being the man of few words he is and not questioning.
"Good," X says, "because if I sneeze I'm going to die."
That was too much for me, who had all ready started with the giggles in the corner, "like Piglet?" I'm barely able to eek out between the shock, horror, and hysteria of the possibility that this is what he's taken about.
"Yeah, like that." he said, and they started the game.
I kept my mouth shut. I don't know what that little man thinks about the flu, but we'll deal with it.
I'm off to find my costume.

Halloween Here We Come





Whoa, mama. I woke up, and my body KNOWS it’s Halloween.

My body wants chocolate.

If I was in the hospital, I’d be getting it prescribed or pumped through my vein via IV.

Thank goodness Deb D. dropped off brownies with dinner yesterday or I may have had no where to satiate my craving.

X also knows it too since instead of dressing, he is all ready a GI Joe, and it’s only 7:30 in the am.

And of course, I can’t find my damn camera for the occasion.

Halloween is a decent holiday, mostly when you’re young, free, and able to dress up in cute little French Maid outfits or police uniforms.

I have had a lot of fun in Halloween past getting to celebrate in NYC’s village (which is crazy daily) to our countries’ capital with my favorite college roomie, Cheryl.

Looking back, I know I’ve lived a full life.

Who marches in the Halloween parade in Greenwich village only to scamper the next year to DC for a pub crawl to turn into a cancer fighting vixen the very next year?

Yeah, that’d be me.

This year, I’m going to be a surgeon, Dr. Boris Lupos, in honor of the two who plagued me day in and day out throughout my nasty surgery.

If my chest tube was still in, I could have hooked up my oxygen and gone as the Bionicle Woman.

Thank goodness it’s not.

I have to say, my favorite Halloween in my adult life was the one when I was relatively healthy (only receiving radiation), and a friend and I planned a whole big bash that I was able to participate in!


miss the freedom of saying “Hey, let’s throw a party with a hayride, costumes and trick-or-treating.”

That is what I thought raising my son would be, but I know, we do the best we can. He isn’t ever at a loss for anything, and no matter my status, there are some things he just can’t miss, like Hallowesta and Hayrides, sleepovers, sports, and birthdays. He has never missed out on a milestone, and luckily, I hear from good “been there” sources, that kids don’t remember the bad.

Good thing since All these treatments have left me just a skeleton of my previous energetic self, but I’m hoping, as LDI nears and I get farther from my chemos, I’ll get back to her.

I’m starting with walking sans oxygen.

Maybe, next, I’ll dance. Xander all ready is.

I'll leave you with this thought: Do you know what your pumpkins are doing?

Friday, October 30, 2009

Simple Tips to Avoid H1N1


In Honor of Halloween and all the grimmy, sticky kids running around grabbing and tackling each other, sneezing, coughing, and breathing on each other from their sugar highs, here are some tips to avoid the dreaded flu:

Remember: The only portals of entry are the nostrils and mouth/throat.

Contact with H1N1 is not so much of a problem as proliferation is.

It's possible to prevent proliferation: While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections:

1. Use Frequent hand-washing (can't say it enough).


2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face (unless you want to eat, bathe or slap).

3. *Gargle twice a day with warm salt water (use Listerine if you don't trust salt). *H1N1 takes 2-3 days after initial infection in the throat/nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don 't underestimate this simple, inexpensive and powerful preventative method.

4. Similar to 3 above, *clean your nostrils at least once every day with warm salt water. *blowing the nose hard once a day and swabbing both nostrils with cotton swabs dipped in warm salt water is very effective in bringing down viral population.*

5. *Boost your natural immunity with foods that are rich in Vitamin C. *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.

6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.

7. Consider taking Quercitin C supplementation or eating foods high in Quercitin: such as apples, and blueberries.


Is it okay to cheer for the yankees since the red sox are out? 
This wouldn't be treason in any way would it? Because I am a fiercely loyal person when it comes to getting someone's back, but since the Red Sox are out of the way. . 
I've been feeling conflicted. Pleas people, let me know.
This is definately a confucious type life question that needs resolve, much like: if I write something nobody reads it, was I actually heard?
 MY 8 week long lung crisis is nearly over. 
I've been infected with a virus that has attacked everybody with all the good juicy side effects of the flu except a fever. 
These symptoms bought me a nasal washing, and I took it, wholeheartedly, to make sure I was wantonly infecting my loved ones.
 Haven't heard of it? Its a lot like its name. A respiratory therapist squirts saline up my nose and then sucks as much as it they can back out to test for viruses. 
If you may possibly have one ever in your future: it's good times. Love it. 
If you think you can stay far away from the test: it's about as fun as getting my chest tube pulled. They're advancing they're technique. Not as bad as a couple years ago. 
Weds appt confirmed once again, my eyes are bad. He upped my restasis (the steriod in my eyes), kept me on my doxicycline, and plugged a duct that had unplugged. 
I'm hoping to be in stellar shape because I have one serious week next week: my meeting on Mon., which I didn't realize I needed so badly. 
I desperately need to move on from this stage in my life, this whole cancer thing. The way my whole life has been stunted is suffocating.
I've never really done ANYTHING for four years.
I have achievement ADD. I accomplish what I can in 3.5 years and get out.
High school I finished in 3.5 years. College I finished in 3.5 years. I think I need to be done with cancer in 3.5 years. 
This would put my projected fix date at October 2009.
F*********. I guess we won't count recovery.

Wednesday, October 28, 2009

Dr.Dana eye extrodionnaire

Awww linda, always know how to make a girl feel better. But I'm feeling a little better on my own.  I have a virus. Like a normal person, like everybody else, but I'm still dragging my bad ass down to btown to dana eye estrodionaire.   My eyes are ground zero for the gvhd battle. I use reastasis, eye drops 6 times daily, I take B6 and avoid anything with anticholinergic effects. Yet my eyes still burn and hurt to the point I close my eyes and with I was blind. They're burning alongside forcing the feeling I have a foreign object lodged in my cornea from the inflammation.motrin could theoretically help. I use berberis homaccord as an anti inflammatory. There is no evidence it hurts. There is no evidence it helps either, except me saying so.  If the drops don't work, I close my eyes until the hurt goes away. Maybe for days. I'm looking into trials today. Its time to get aggressive. Now that's something I know how to get down and do.

Out of The Baldie Business

I have a virus: headaches, throwing up, tummy pain, hair raising chills, sweats, and a cough that may send up my entire fibrotic lung. 
But no pneumonia. 
No air leak either. My tube is out! 
I still have a small pneumothorax that will eventually fill, solidify. That portion of my lung wasn't doing any air exchange anyway. 
The tube inside my chest was 12" long.
I closed my eyes, gritted my teeth anticipating the pain then Johnstone yanked and kept yanking. 
I had a foot of tubing in my chest! That's crazy. 
Do you think I could get into guiness under world's toughest woman? I have more examples.
 I'm not so interested in world's cutest cancer patient. It's been four years. I'm not the baby on the scene, and I've been seeing all sorts of evidence bald is beautiful elsewhere.
 I also think I an about to be out of the baldie business. I keep thinking back to the day after my first transplant when dr. G walked in and said "hey, you're in remission. See you in three months."
 That was april 23 2007. I even remember the date.
 What has to be done to get that convo again? How do I get to a "hey, see you never?".
 I have gotten a leave until my appt the fifth in boston. I'm sleeping, eating oranges, drinking tea and pouring all sorts of herbs in my pastas to help prep my body. 
Now let's not pressure me to leave my house to join the real world. I'm happy here at least until halloween. I may go to Hallowesta as a surgeon (mask and gloves, I think so) or a patient (wheelchair, oxygen, pjs) depends what shape I'm in. 
Either way, I'm looking forward to Nov. 2, my very first Emerging technology meeting with the Department of Health.
If anyone has any ideas, suggestions, complaints regarding how their hospitals current electronic intranet is structured please let me know. I'll get your opinion heard.
Today, I'm dragging my achy ass to Boston to see Dr. Dana, The eye guru, oxygen, mask, and wheelchair in tow.
Maybe J and I will find some way to enjoy the dreary trip. We've both been eyeing a quick trup to the mall.
It's never too early to Christmas shop. We have lots of kids in our lives.

Monday, October 26, 2009

X and I had our first playdate in forever. Being in the hospital 3 out of 4 weeks doesn't lend to chillin' with the mommies' club.  Dani and I had mom dates every sunday all last year until her pancreatic transplant and my cancer relapse.  Then life happened. Hopefully now we're back. Her doc put the kabosh on working due to H1N1. I hear odds of survival are 4 out of ten for patients like her. I don't know my odds.  I'm special. Just when you think I'm knocked out, 5 days later oxygen is gone and I'm back to playdates with coffee and donuts.  And come to find out, vna's crazy suggestion I do my own dressing is doable. Not comfortable. I have to twist myself around like an owl. But not impossible. I can shower. I bring my drain in with me, work around it.   The whole problem breathing was really hampering my abilities.  Of course I'm home and who has a wheezy junky cough? That's be x. Ad who has a pneumonia flavored nasty cough.  That'd be me. I'm iffy about if this deserves a phone call to my MD or NP. Maybe the cough is from the pneumoa closing. Either way, I'm paranoid. I've suffered too much for too long to be messin around, but then again, I do have an appointment tuesday. Maybe I could push it?

Saturday, October 24, 2009

How to help

How am I feeling? How am I feeling? How am I feeling?
I feel like a woman with a tube coming out of her lung.
It's raining. It's cold and dreary.
X's soccer jamboree was canceled.
We could be stuck inside all day doomed by the weather.
We're not. Let's not let the picture get bleak. I made an appointment for the boys to get a haircut. We're going to see Astroboy then coming home, eating left overs and playing board games.
Life is good.
Mom's back in Mass with poor Heather who had a kidney infection and mastitis.
Dad's going down today with my grandparent who move back to Florida Weds so they can see their newly born great-grandchild and replace fix the obnoxious, backyards storm door.
We opted to stay far away from that day trip.
It sounded exhausting, as much as I miss my sister and family.
My goal is to heal all up before she does, just because sibling rivalry should be used for something useful.
I just may do that too.
My air leak has sealed up.
I hope my ears will ring from cheers all over. This is serious.
I'll have the tube removed Tuesday, just in time to trek to Boston Weds for an appointment with Dr. Dana, the GVHD eye guru.
It's been hard keeping my eyes as a priority and maintaining my regimen (restasis 1 drop each eye morning and night and systaine eyedrops 6 times daily).
It's hard to care about the state of your eyes when you're having a serious major organ malfunction.
It's easy to lose the determination to keep every piece of my body in best fighting shape, especially when just about every individual piece of me needs to be attended to.
I'm one big malfunctioning mess.
No worries, I plan on doing lots of napping and resting until I'm healed.

Thank goodness Jon has been superdad this month.
I've been hospitalized 3 out of 4 weeks.
We really appreciate all the offers for help. All apologies if we didn't get back to you.
After four years, we do okay in catstrophes.
We're really lucky to have our Aunt Becky who has been cleaning our house FOREVER.
I could probably credit her with saving my marriage, because two type As in a minimally dirty house is disastrous. She's been helping us for years.
If anyone ever wants to help with this, we'd love to give her a break. We try to keep things picked up but scrubbing and vacuuming is impossible for me.
We're lucky that R& B, my in-laws, have been taking care of Xander after school. He really needs a consistent caretaker that he feels comfortable with.
When I'm in the hospital, or too sick to get out of bed, Jon goes to work at 8am and works until 4pm(instead of 7am-3pm) so he can drop Xander off at school.
We're incredibly weary and distrustful of who helps care for him. His happiness, safety, and security are our ultimate goal. This seems to be working really well so far. We're really lucky X's school and J's work are within a mile of our house, and that his company is flexible.
From how Xander's been coping with my illness this fall it all seems to be working well.
The staff at his school is amazing.
X seems really happy.
My parents and Jon coached his soccer team so I'm pretty confidant he is still getting his favorite things and family time.
Jon has been working overtime being superdad. He has been cooking meals too.
If anyone wants to relieve the stress, we always appreciate meals or anything to do with food.
We're all American: shepards pie, meatloaf, shake 'n bake chicken, pot roasts, chop suoy, spaghetti and meatballs, beef stew.
We love honey nut cheerios, gold fish, bananas, apples, & grapes.
Freezer nights are Tony or Digiorno frozen pizza or tyson anytizer popcorn chicken with tater tots (we all have them).
When it comes to helping there is nothing ever to small.
When a friend of mine had a major surgery and I had little time, I brought over frozen foods and meal planned for her for two night after I caught her sobbing because she was too weak to get a casserole in and out of the oven for her kids.
Anything that can be thrown together easily, with the least effort, is fabulous. Usually that means microwavable or heated on a stove.
Last year, my Aunt Carol made philly cheese steaks and froze them into meal size portions. My Aunt Pauline has made soups that I could freeze. These were some of my favorite ways I was helped.
I also dropped off kiddie snack that her 7 and 3 year old could get themselves: goldfish, animal crackers, puddings, juices, etc. Anything that can help the kids function independently while a parent is healing is priceless.
Phone calls to say "hi," prayer cards, emails are all precious. I generally sleep in the afternoons, but when I'm really sick I do get depressed and start to refuse to call anybody.
It's not that I don't love you all and want to talk, I'm just too damn pissy.
I don't want it to spread. I THAT could be contagious.
We're so lucky to have the love and support of so many people. We appreciate all the offers. It really never gets easier to ask for help when your independence is so intricately tied to who you are. Thanks for making it easier.

Friday, October 23, 2009

Good news!

I don’t see an airleak!

I have been looking, deep breathing and coughing while I watch for my nasty drainage to bubble up and nothing! I’ve got nothing.

I think my lung may have healed!

All those thoughts, prayers and love are working.

Now, I wonder what I should do with this.

If it’s really better, maybe I can get checked by the surgeon next week and have it pulled then.

No reason to be lugging around this tube for nothing.

I am still draining, but not much, maybe 50-100 mls.

Unfortunately, since I am an outpatient, now we need to be absolutely sure that my lung an handle remaining inflated by itself, because if it doesn’t, I’m at home.

My lung failing to work, anywhere, constitutes an emergency.

I think I’ll call the surgeon’s office today.

And of course, even though I just spoke to Dr. G yesterday, there was something I forgot.

I don’t think I need to take my avelox, since that was prescribed for my lung infection that turned out to be the worst case scenario: fibrotic, scarred lung tissue with NOTHING pathological.

I really wish there was something I could kick over this.

But then I’d wind up getting winded and passing out on my ass.

Anyway, this is a double edged sword. Call too much, you risk bothering people, becoming a hassle.

Don’t call I could screw myself up, but generally, I end up doing the latter. I treat myself.

The avelox is out. I’m keeping the doxyxycline and bactrim.

I’ve also cut my pain meds a little.

Let’s not get excited here.

I try to tinker with my pain control all the time, but with the biopsy I am now able to breath, yawn, sneeze, cough, and move without the extreme pain.

I dropped my long term morphine dose to 60mg in the mornings and 30mg in the afternoon and in the evening.

This is all a good sign.

I’m well enough to get bored and play with my medications.

WHY?

I’m trying to download the last video I took prior to my chemotherapy.

I looked so good. I was feeling good.

I had serious misgivings about receiving my treatment. I signed off apologizing that I may be unable to keep up for a while.

In hindsight, why did I take it?

The dosage had been decreased due to my sensitivities. I talked to Marc and Anna and I trust them with my life decisions.

Looking back, I just wonder why I keep accepting treatments that my gut says I shouldn’t take.

I think I take them because it’s the path of least resistance.

Alyea and Gautier take good care of me. They’ve been tinkering with therapies for a lot longer than I have. I’m just too tired to search elsewhere unless it’s absolutely necessary.

And I know I can take a hit.

I just keep taking them, rolling over, and climbing back up to where I was at.

I know easier, less caustic therapies exist.

I know vaccines and hyperthermic treatment and even a new radiation therapy that has been 100% effective in trails exist.

Why can’t I get one of those?

Hopefully, this is all a mute point.

I’m rooting for scenario #1.

The terrible chemo regimen that’s beat me up so badly has worked (it has), and will continue to work (unlike all the other ones, just because I want it to), I’ll heal relatively quickly (alongside my sister, when she’s in good shape from having Preston, I’ll be in good shape from having my lung slit), and then I’ll go to Boston and get my Donor Lymphocyte Infusion quickly and efficiently.

I’ll get some raging graft vs. host disease but I’ll be able to manage it symptomatically.

Then I can go on being the alpha nurse, soccer mom I thought I was going to be.

Yes, I’m going back to being that woman, the jaw set, eye on the prize, determined one, because somewhere between diagnosis and now I have definitely become a woman.

It’s just going to take a while.

Thursday, October 22, 2009

Where I was: Sep. 28

A Little R&R

I got out of my chair and walked to my bedroom completely forgetting about my oxygen, and I made it! 
It was fabulous, a complete relief off my shoulders. I made it all through my day: washed up, got dressed, went to a dr's appt, full day without needing my supplement. 
Everybody keep thinking healing Hillary thoughts. 
The plan is to relax, rest until nov. 
Sounds like a while. Makes me a little nervous that my cancer could flare back up. I'm worried with being out of sight I'll be out of mind. 
Right now, I'm enjoying my R and R watching Dr.Phil. The topic today: why woman have sex. 
I don't know how you can talk up an hour or write a whole book about this. I always thought the reasons were pretty clear, if it needs a reason at all.  
But times have changed and whoa sex for ipods, "trial runs," to try it with a different race/age/sex, and finally, to spread a disease.
To spread disease?! Yeah, they said it. Can I hear a unanimous YUCK. 
Is everybody forgetting that ladies don't kiss and tell? Maybe what's ladylike has changed a little. Here is the generational change conundrum. 
At the risk of sounding unladylike, I want to know who I have to give it up to so I get platinum plus, Grade A++ health care.
But whoa diseases, an ipod won't cover your HIV treatment. 
Anyway, I'm a lucky girl to get to hide away in my house pondering such indepth topics of human nature, forget the quest to cure my cancer once and for all. 
I have weeks for this lifestyle: the chest tube stays in until nov 3 unless I notice the air leak has stopped. I have an appointment in Boston with alyea for the first day I could get one: nov. 5. I always offer in my appt. to set up my own appt with an outside doc, then I kick myself in the ass when I get the bulldog bouncer secretary who is hired specifically to screen callers so the doctor, NP or nurse is not bothered with calls like mine. 
Saying silly things like, "he said to do this or that or the other thing" doesn't get you anywhere because the secretary is on real time, baby.
 I really think I'll stop offering to facilitate communication between hospitals because it usually ends up with me frustrated, pissed, or crying and calling up the original doctor I've spoken to.

Adapt or die


I wonder if I went to nursing school solely to manage caring for myself.
I'm home and using all I've learned, all my savvy to try to make life work. Hopping in the shower is not so easy having to keep my dressing managing the tubing and having my oxygen on hand "just in case."
I'm constantly readjusting myself and my body to the situation like a case study in Darwin's theory that if we fail to adjust we die. At least I am a master of adaptation.
All my critical thinking is dedicated to how my life could be made easier using advancing technology along with good old-fashioned nursing and medical skills. 
Good thing my myopia (that's short sightedness people) extends only to my eyes, so I can apply my personal survival techniques elsewhere. 
I have a meeting Nov 2., and then I will formally join the Review Board regarding Health Information Technology.
I think I'll be good to go with chest tube still in place, but hopefully the oxygen gone. That puppy is not coming out until the third. 
I am still draining a little from the site but only 50 -100mls daily. Anything above 200mls should be reported to the surgical team.
My site looks great, according to VNA. I could only confirm that myself if I were a contortionist.
 I still have an air leak surrounding the incision, But I did get up, get dressed and get to the drs without using my oxygen!! 
I can feel myself healing. 
It has only been ten days since my surgery.
 Our rush-rush society has trickled into our healthcare and our attitudes towards healing. 
I had a biopsy into an area of my lung that has been radiated three times, it's not going to hurry scurry and heal the way we'd all like it to. 
There is often a huge difference between what we expect (or the what the insurance company will fund, what a professional wants to allow) and what's real.
But now its rehab time. I get to chill at home watching shows with people having conversations with each other.
If daytime television is not a motivator to get moving, I don't know what is.
I'm tired. During the day I rest, moving really only to force my body into better shape and take care of my needs.
I think I may start dancing again- really dancing. I know there is a problem if I'm not at least shaking my shoulders in the car. Dancing reminds me that my body is beautiful and I'm in control. 
I've been keeping hush-hush about my fly girl days in College. I was one of those girls who hit the club with my girls and our synchronized dances that made people stop and watch.
I like to watch those cheesy dance movies, always out of NYC of course, and think, "Yeah, we were hotter," and I do still watch the Beyonce videos to make sure I'm still at least as good as her. There was a little bit of time when our moves would have put her to shame.
I have been making jokes and even getting the giggles, too.
Eventually, this will all be funny.  I'm making strides. I'm moving up. 

Tuesday, October 20, 2009

Dad"s Update

Hi All
The foliage along the Connecticut River Valley is beautiful this time of year. I say that because We have been getting a lot of viewing making the trip to Dartmouth. Monday Hillary went in for surgery to find out what is causing her breathing problems. They did a wedge surgery with a scope and took out the mystery material from her lung. Luckily they didn't need to spread her ribs. They told us fairly quickly that it did not look like lung cancer as there was not a cellular structure. They took out 3 pieces and tried to grow cultures. The choices are usually bacterial, viral or fungal that is causing what seems to be pneumonia. She had been on a broad spectrum anti- biotic. They told us it is scar tissue. Probably from the stem cell transplant. In the meantime Hillary is still in the Hospital and still having lots of trouble breathing. We don't have a solution or plan of how to proceed. She still has a chest tube in that drains the lung. She is very weak and can hardly move without needing to catch her breathe and take oxygen. It is scary to watch her.
She has now been in and out of the hospital for the last 4 weeks with this condition and nothing is improving. We hope to get a new program as all the heads meet this week. It is not the normal reaction to the bone marrow transplant. But we all have learned Hillary is abnormal. She is far above normal.At least we have ruled out cancer but will the side affect cause as much trouble as the cancer? We will just keep hoping they can fix her lungs.
Please keep us in your prayers and thoughts. We really don't know where we are headed right now. But if the good lord is willing Hillary will be back on her feet soon.

keep the prayers coming!

  

I spoke to Dr. G last night, my hematologist.

He had planned to make it to see me in the afternoon regarding the consult he received that morning, but I had to say asta la veista and get out of that hospital.

Once I did get home, he called to consult, and now, I can officially breath a big sigh of relief.

He told me what I’d been telling everyone else, but was really professionally unconfirmed: The process of healing will take a while, but it will get better!

Ahhh! Let me just breathe a big sigh of relief.

I’d been saying this to my friends and family, but I’m pretty sure they just thought it was me being me, trying to make my optimism contagious, doing the opposite of what a drama queen does, telling everybody that something was really nothing.

I literally can breathe big sighs of relief now. I can cough too, and yawn.

These are all breathing methods that people do thoughtlessly that I haven’t been able to do since the beginning of October.

I’d start the breath, the yawn, sigh, or cough and stop when the pain became too much.

Not today, No, not today.

I accomplished my one major goal for the day, which was assisting X to school.

J and I had different ideas as to how this would happen.

I thought J was going to work and leaving me to task, alone. I called my mom to check in before work to make sure he’d dressed appropriately and wasn’t taking advantage of his sick mum.

But this didn’t have to happen. Jon arranged for him to go to work for 8:30 this week and stay until 4:30 so I could relax.

We decided on a compromise.

I would try and work my way back into doing it myself, even if it takes all week.

I think we’re both happier and more comfortable with this.

There are a lot of readjustments that must be made.

X didn’t quite know how to take the fact that we couldn’t snuggle the way he wanted, the way we always do, entangled in each other.

He ditched out on me to snuggle with Dad on the couch when he went to sleep, but he did give in and accept the limitations this morning.

LinCare, my medical equipment company, came yesterday and delivered my oxygen tanks.

I have one compressor, one huge mobile tank, and 9 9lb. that can be taken out.

I do only have one connection toaccess the oxygen within the tank, and I’m not so impressed with that.

I think I’ll call to get an other one.

Today is designated to organizing my medical equipment and medications.

Vanessa at Visiting Nurse came to admit me again.

We reviewed my meds and I ordered the meds that were getting low alongside doing the intake.

It really is exhausting.

Staying alive is a full time job.

I did finally get the strength to look back on some footage I took towards the beginning of the month.

I’m going to talk to Linda to see if she wants the scenes or if I should just publish them.

There is something eery about it. It made my hair stand on end, and I’m the one that had gone through it.

Of course, Linda gets first dibs because Val and she sent me a gift package from LUSH with cheesy magazines.

Val and Linda are evidence that what I do is a good thing. They’d be my homegirls if I were to move to B-Town or the Suburban Surrounds.

Linda was a senior editor at CNN and Val was a stand-up comedian. How could we not all mesh perfectly?

Thanks to all the people who have contacted me to show their love and support. I appreciate your thoughts and prayers.

I’ll write later about what I need for help, some meals, laundry, etc., would be so useful.

It’s hard to ask for help, but I’ll post to let you know what we need if you’re willing to help.

We’ll let the love in.

Thanks so much for everything, especially your prayers, keep them coming.

Monday, October 19, 2009

Praise Jesus!






Praise, Jesus!
I may finally be going home.
Yesterday, the superior of my two attending surgeons, who I had for the week, appeared and finally okayed home oxygen.
Unfortunately, that’s not something that comes so easily on a Sunday. Having me leave the hospital is a project.
This morning, I had a whole new set of caretakers (which included Ms. Surgeon from yesterday) who understood that my primary concern was my desaturation on exertion.
I wouldn’t even say “on exertion” because that implies that I may be excercising or doing something strenuous. I would say desaturation upon movement.
So since it’s Monday, Visiting Nurse can be called to arrange for my appointments, New England Life Care or Keene Medical or whoever is going to deliver my 02 will be available, and I can go home taking care of myself.
Of course, someone from heme is probably coming around to consult on me regarding this little inability to breathe problem.
I’ve only been asking since Wednesday when I was moved from the fourth floor.
I guess I wasn’t clear enough.
I don’t usually have a problem with making myself clear though. HHHmmmmm. . . .
What I really wanted was a person with the initials MD after their name to write for at home 02 since I’d been told a pretty flat out “no” despite that crazy evidence of desating with activity, gasping for breath, etc.
It’s really only air. Silly me.
I was also told that the surgeon, “couldn’t force anybody to see me” regarding the consult.
Well, I thought that was exactly what an order was, and what the hell was he insinuating? That this whole not being able to breathe, shaky, faint thing was all in my head and nobody else would be interested?
I’m pretty confident that most practitioners would look at vital signs with a BP of 80/50, a heart rate of 122, and a Pa02 of 88% and think, maybe some thing is wrong here.
But I’m just being bitter.
So I’m happy. I am feeling like a caged animal. I do have a huge picture window with a fabulous view of the foliage.
Want to know my favorite scene from this window? It was some twenty-something patient walking up and down with a mask on her chin, ten different IV meds hanging, talking on her cell phone and smoking a cigarette.
I just wanted to have the hand of God come down and smack her or pull some freaky Friday stuff where she sees what it is like to never have smoked a cigarette but be unable to breathe.
Now I’ve seen the discharge coordinator.
I have the official what’s up.
I can be discharged. If heme can’t get to me, I’ll see my team outpatient. I am only waiting for one of two agencies to get me my oxygen tank.
Can I tell you, when I envisioned twenty-seven, I really thought I’d be attending my child’s soccer games from my car with an oxygen tank and a chest tube.
I bet you can feel the sarcasm dripping.
I did envision that child average four goals a game. Holler. At least I can remember how I moved vicariously through him.
It is what it is and now that I have finally gotten to a point where I can leave with the equipment I need, I’m happy to have what I have.

Sunday, October 18, 2009

Ugh (or UGG) Update

I’m still in the hospital. I resisted my I can do everything myself urge. I stayed away from “being a Hillary,” and I did not bull doze my way out of the hospital despite really, really wanting too.
I had several calls trying to intervene on my decision to leave the hospital.
Surprisingly, none of these calls came from my surgical team even though my complaints included an air leak (whole in my lung) and severe shortage of breath walking short distances (80 laps around the pod= 1 mile, I could take two laps and have a room air oxygen saturation of 88%, you can do the math).
To be honest, I was scared to go home too. I would walk to the bathroom, stand up to brush my teeth, and be gasping for breath and then shaking until I could get back to my bed and nasal cannula (for my oxygen).
I live ten miles from the nearest hospital.
Your brain can theoretically go five minutes sans oxygen without resulting in permanent damage from hypoxia.
I wouldn’t have made it. Maybe I would have made it alive, but that scenario is worse. I could have survived breathing but brain damaged, unable to speak, walk, move, and/or care for myself.
But I really thought I was just being weak. The doctors were telling me I was fine. I didn’t need oxygen, etc.,etc.,etc.
I just feel like a big whiner.
Now, I realize my hemoglobin was 8.5 on October 15th and hasn’t been checked again since that date.
I was definitely fighting an uphill battle.
Hemoglobin are the cells in the body that carrying oxygen around. A low number means less oxygen carrying capacity resulting in shortness of breath.
Generally a hemoglobin less than 9 may be transfused. The only reason this is the decisive number is because 9 is the number that medicare/aid will reimburse for.
Maybe this number has risen on its own, but maybe my body has responded to the 3 years of chemo, 2 transplants, radiation, steroids, and stress and couldn’t quite rally the response needed to up that number.
No wonder I’ve been struggling.
I’m tired, hurting, and upset. Yes, I did breakdown and start Christmas shopping. It made me feel better. I did buy UGGS for someone. . . for half price at mydailyboot.com.
Worse, I’m frustrated because pathology came back NEGATIVE!
I was right when I called it a “snotoma.”
The biopsy grew NOTHING, no fungus, no bacteria, NOTHING.
How the hell are we supposed to intervene and fix NOTHING?
I’ll tell you: the surgery alone was my treatment.
The tongs on the scope were able to break through a crusted barrier that had surrounded the previously infected area, sealing it off from my body and allowing the schmutz to drain out.
The liquid whatever was likely compressing a bronchiole causing the pain and previous shortness of breath.
After that, it’s all me: walking, deep breathing, and praying the whole that was made didn’t seal up so I could keep the functional area.
The abscess resided over my upper right lobe.
I like that lobe. If I had to chose between a problem with the left and the right upper lobe, I would chose the left. It’s smaller.
But no, because I am a walking, talking example of murphy’s law it would be the better lobe to go.
I finally prayed to God and tell him I couldn’t take it anymore. I want to tap out or cry uncle. This is not a fun game.
I hear that God only gives you problems you can handle. Sometimes, I wish he didn’t trust me so much.
I think he’s listened.

Saturday, October 17, 2009

To Leave or Not to Leave


I was ready to get out of here today.
I was making plans for tomorrow.
We were going to see “Where the Wild Things are.” I could finally get something to maintain my hair (and not a razor). I would be in my home, with my animals, and my family. I may even be able to get Lei here birthday gift.
She turned ten on Tuesday. We’ve gotten her presents, but the other weekend she felt perfectly comfortable announcing she wants a pair of UGGs.
I could go for a pair of uggs, or at least some fuzzy slippers.
Except, I have my transportable chest tube drainage system.
I also still have an air leak in my lung that hasn’t healed.
Technically, the worst case scenario regarding going home is I have a hole in my lung.
If for some reason the tube is pulled out of my chest, my lung will deflate giving me a “pneumothorax,” and I’ll go into respiratory failure.
I was going forward under the belief that nothing possibly ever could happen to my tube.
That was until my long time family friend and my previous PCP called today to tell his opinion of my decision.
“You are being Hillary again.” He says, “You couldn’t answer the phone after walking around the pod last night (information he had gotten out of my dad), and you know Xander requires a lot of energy.”
“Yes,” I thought, “all true.”
I didn’t say this, of course. I still have a little teenage rebellion left in me.
He told me if I was going home it needs to be with an oxygen tank and that I need to remember how far away I am from help.
These are very good points too. He succeeded in making me think. I may now stay due to fear that leaving the hospital could kill me.
The movies, the family, fuzzy slippers and hair pieces will all be there when I get out.
I hadn’t heard this opinion. I don’t usually get a clear and concise message from anybody as to what I should do.
I told Doc he could come in and talk to the doctors themselves whenever they come in.
But now I think maybe I should stay . We’ll see.

Friday, October 16, 2009

Cancer Care Vs. Surgical Care

I have good and bad news all rolled into one.
Thanks for worrying about me, people.
You should have been worried. I have been miserable.
I’ve had an air leak from the insertion site that hasn’t seemed to improve. My pain was a little out of control, and I had difficulty receiving my medications to control my pain and then being able to move to rehab myself like I knew had to be done.
After any surgery which causes pain in the chest or abdomen there is an increased risk of pneumonia. The pain reduces a person’s ability to take deep breaths, and without the deep breathing, bacteria can accumulate.
People get what is called “atelectasis,” and their breathing is further impaired.
With me all ready having an infiltrate, which was the entire reason for having surgery, I was at increased risk for problems.
From Tuesday until this morning I wasn’t able to do my activities of daily living: getting out of bed, brushing my teeth, fixing my hair, washing myself, walking. I just didn’t have the strength, ability to breath, or pain control to get through.
I just didn’t have the help where I could say, “I’ve had my MSIR, 30 minutes from now I need help washing.”
I actually didn’t even get help when I was gasping for breath, grasping my chest after I’d get back from doing simple care, like brushing my teeth or using the bathroom.
I think they just had no idea what to do so they did nothing or even worse, they hightailed it out of the room hoping it would just go away.
Not being able to breathe is scary, not having intervention in a hospital is even scarier.
Worse yet, all I needed was to be given some oxygen to help me resume my normal levels. As soon as I was moved from the surgical floor to the cancer floor the nurse grabbed me oxygen tubing with extension so I could at a minimum move around my room freely.
WHA-LAW, I’m feeling better. I’m not so scared, because at least now I am reassured that after I move I’ll be able to breathe.
My stories of hospitals past began to haunt me lying in bed day and night.
I remembered how patients would call 911 from surgical unit because they weren’t receiving care at the hospital due to staff shortages.
I remember an NP telling me how Mt. Sinai lost their transplant license after a liver transplant on a surgical floor went into shock and nobody noticed his shakes, tachycardia, and fever before he went into cardiac arrest.
As for me, I lost the call bell when I was sleeping and woke up gasping for breath, screaming for help, and no one came for a half an hour. I couldn’t breathe or move because of the pain. I had no option.
I didn’t get a scheduled medication because it was written down as ophthalmic corticosteroid instead of restasis and the nurse didn’t get their were two names for the medication.
I had visions of me failing to thrive, malingering on this floor, my pain remaining the same and my lungs getting worse as I laid there for days, unable to move or walk, and no person with the time to help me.
The final straw came when my mom returned from Mass. and saw how sick I still was and then my nurse, with the my medical record book in hand, told me, not only that I didn’t have the medication I was asking for ordered, but that if he were to give it to me I would orverdose, and he’d be running for NARCAN.
I sat, flabberghasted, that he would speak to me the way he did, especially when I knew I had the medication I wanted ordered.
My pain control was very meticulously ordered and checked through all the specialties: anesthesia, a pain team, and palliative care.
Everything I needed was ordered, I just wasn’t receiving them due to nursing errors.
My she-bear momma had the charge nurse in my room within minutes and requested a transfer.
My needs as a cancer patient were superseding those of a regular surgical patient, and some of the staff just were unable to adjust and handle the added acuity.
It’s been difficult experiencing the dichotomy of care between a surgical floor and a cancer unit.
I’ve always been interested in things that are seemingly the same, or at least should be superficially: the hospital’s Columbia Presbytarian & Bronx-Lebanon, which reside less than 5 miles apart, the conversations between physicians & their patients vs. conversations with their collegues, and now, the difference in treatment between floors of the same hospital.
The social culture within all these examples differs so extremely you may as well be in a parallel universe.
It really saddens me how many people willing take advantage of others who are less fortunate, who are not able to speak for themselves, and do not have the strength to stand for their basic needs.
I wasn’t even able to speak for myself and I’m an advocate.
It’s a terrible position to be at the whim of a person who is in charge of whether you get out of bed to get to the bathroom or whether or not your pain is in control.
How could anyone then complain?
After my mother and I complained about the care I was receiving I was told I had to keep the very same nurse.
Needless to say, prior to my transfer, had I not called I would not have received my scheduled doses of antibiotics.
And no, they were not administered by the useless nurse who clearly had a chip on his shoulder to begin with.
Health care practitioners have the power to say yes or no to your health status. Not even I could rise up when I’m dependent and demand what I need, what I know is standard care, and risk possibly receiving none at all.
Since I’ve been moved, I’ve finally gotten a shower. I have gotten out of bed for a walk. My ambulatory oxygen levels were checked, and I’m doing okay.
My chest tube drain has been upgraded to something I could take home with me if the leak doesn’t clear.
I’ve improved more in the last 24 hours than I have all week.
I’m now at the point where I can probably be discharged.
I could stay, of course, since I’m still having shortness of breath for no known reason, but haven’t been fully healed before my discharge recently. I just leave for quality of life reasons.
I think that may just be what I do, soon.

Updates from the last few days

October 15
I pulled a "Hillary."
For those of you who don't know what a "Hillary" is, it's doing something very wrong for the right reasons.
For example, this morning, I thought I'd worked well to gain my independence so after breakfast I unplugged myself from suction and headed from the bathroom to wash up.
Well, my pain was just not that well controlled.
I made it, sat down, peed, and then realized I wouldn't be getting any o2 on the toilet. I pulled the chord (afraid I'd pass out) and tried to wheel as quickly as possible back to my o2.
When the nurses finally made it in to check on me, trying to decipher what is going on, I didn't receive any intervention.
I just crawled back into bed, myself, huffing ad puffing, scared, wanting to breathe, and wishing somebody would help.
I really wanted to be up, moving, and in the groove towards independence. I think the little episode has made me sleepy.

October 14
I made it out if bed today to wash myself up. That's my accomplishment for the day. It's significant. I still have an air leak which leaves me really short of breath when I am only on gravity drainage.
I still need my suction. The gasping for breath makes that clear.
My am wash up put me back into bed for another six hours or so, exactly the amount of time Steph had to hang out.
Yes, I've been a little lonley here with mom at heather and everybody else having lives. I won't see X until tomorrow due to my surgery, his soccer and that dad gets tired working, parenting and trekking the hour round trip.
So I am here sans book and computer, losing my mind. At least this motivates me to move. I look at recovery like training for an event.
That event is my soon to be normal life. I schedule goals and accomplishments for the day so I can feel like I have many successes and keep my mind off the loss of function. I don't see set backs as a loss exactly.
I try to see where I need to go and make a plan to get me there. Then I can focus on where I have came from and not "where I should be. Oh whoa is me".
Do you feel me? Now I am moving independently with the pump, detaching and reattaching so I can go where I'd like even if my lungs don't let me go far. I am hoping to hear from heme by the end of the week regarding how this weeks' events effect my overall treatment. I would definately like to know what's grown ASAP and if it's nothing, I think my head may pop.

Tuesday, October 13, 2009

just keep breathing....

I'm breathing. Yes, I am. You would have had this info had blogger not lost the posting. I just like doing things the hard way.I also do not have my computer or the book I have by dying to read. Those got left in the car. First things first, the Wellington's (my sister and bro-in-law) had their second son. They now are the proud parents of pierce (26 months) and Preston Wellington. With names like those, I feel like I may need to get dressed up just to hang out with them.  There is going to be nothing but good things for this fam tis week.  . I was able to get out of bed and move by 11pm last night thanks to whoever denied me my catheter. It has been beneficial. I've been up several times. . I'm moving relatively painfree.They're pushing me off the iv pain meds quickly.Can't a girl get a day of rest? I can feel my lung expanding better all ready. 1/3 of my "snotoma" is gone through the surgery. My 02 sats are up from low 90s (my norm previously) to 98 and up. That's worth a thoracic search. I feel the remaining stuff moving. I have a small air leak (a hole left in my lung that hasn't completely resolved) but hopefully it will fix itself by tomorrow so I can get my chest tube out. Prior to removing the tube, I'll be put on gravity drainage. This is like a trial to make sure my lung can remain inflated without the tube. If not, it's another day here hanging out with my chest drainage system.  . Not sure where the plan goes from here. I was hoping for results within 48 hours and then maybe I could be sent off to my second home, 1W, to be treated for what's hopefully a very susceptible easy-to-treat fungus. Then I'll be off and running with my treatment right on time for my christmas miracle. Pray those prayers.

Monday, October 12, 2009

the waiting game

I'm layin in wait in recovery. It's 8pm amd I came for surgery at 7:30.  I have been kept comfy and given the luxuries of "room priveledges," a visitor and eatin or diet progression.  So technical. I was not blessed with a foley catheter. I don't know who came from on high to make that decision, probably someone whoe cares about me getting an infection.  I still want a catheter. No catheter does not mean I'm walking to the potty. It's a bed pan for me babby. Right now I'm crossing my legs waiting to get to my room so I don't have to pee in the middle of a party, even with a curtain, I feel exposed.I did keep myself entertained by watching the quesi-crashing patient. He tore out his A line, which is directly in his artery. When removed quickly spurts all over. He was flailing enough to buy him some restraints and then after calming down he chastised the nurse for talking to herself.   I know one person who has been known to act up like that....... I bet you can guess who .......    Ok ok  The aline thing only happen once, but that's probably since I've only had an aline once.  I am hoping to make it to my roon for lie to mr. I've missed house. At least I know what to catch on hulu or fox.com tomorrow, maybe I'll do that along with grey's anotamy.    Big plans people big plans for while I'm recovering and waiting for the biopsy info to come in. This takes up to 48 hours due to the growing process. The schmutz needs to be gathered then sent to microbio and patho where they can either view it through a scope or place it on mediums to grow. Once we can tell what it is we can treat it and maybe, just maybe, we can locate a possible source. I'm concerned its in my house but now, I'm playing the waiting game.

making it

I made it through, and I did it with only three small incisions. The surgery was done thoroughfare (with a scope), and three serious samples were obtained! I knew Theater would pull me through in a big way. I do ache, but it's nothing like the pain of the abscess (not yet at least). I am hoping this ends the gasping for breath episodes. Those are probably the scariest moments I've experienced on earth. I hope I never again have to feel what it is like to breath and have no hair exchange or to stand gasp praying ut will stop. Those episodes were getting longer. Now they could be gone!! No more visions of wheelchairs dancing in my head. God bless.

surprise

Surprise, surprise, surprise. I still can't breath. Now the dyspnea happens without pain, which scares me more.it scares me almost enough to be excited for my lung biopsy today. I'm hoping this will give us the answers we're looking for. I need to know what I'm fighting to be treated properly, but nobody seems to know. It's a very scary situation. I am still nervous (who wants tubes and a scope stuck in their chests?), but the end is worth the means. Please pray for a quick recovery and solid answers. Hopefull I'll never spend another day worrying whether my lungs will work or not.

dad's family update

Hi allThis has the potential to be a long update. I was hoping for a nicerelaxing Columbus day weekend at home, go to good friends wedding andjust have fun. But we have feed off of excitement not relaxation. So letme catch you up with everything.Patrick has this week off from school so I have lots of work for him. Heand Grace made the bigggg announcement to us on Friday Night. They areengaged to be married. We are so excited. Grace is wonderful. She hasbeen a part of our family for more than 5 years now. She is an RNworking in Portland Maine. She spent 3 weeks this summer working inGhana for doctors without borders. She and Patrick seem great for eachother.  OK another wedding to plan. No date set yet. Both will havetheir bachelor degrees in May.Heather was told she could not go to the wedding up her in Hew Hampshirebecause she was too close to having the baby. Well today --Sunday at5:27 pm Preston Allen Wellington, 7 lbs 1 oz blessed us with hispresence!! Nancy has now moved to Natick Mass for the week to help out.Pierce is very excited for having Nana and a new brother. Preston,Pierce, Heather and Allen are all doing well.Nancy had to finish her report on Friday so that the national dentalhygiene exam could be voted on 30 days from now. She is the chairman of the exam committee that is writing an exam that will be universal forall 50 states. That is the goal anyway. 1 test so that it will meet therequirements of all 50 state and Hygienist can travel between states andwork without taking another exam!! The committee looked like a who's-whowith professors with doctorates, written books, in education at majoruniversities. Then their is Nancy with an associates degree but has workexperience for 33 years as chairman.  It's now off to be voted on.Now for Hillary. I have not been keeping everyone up to date. Hillaryspent most of last week in Dartmouth with severe lung problems. She wasreleased on Thursday but is back in on Monday. We have eliminatedpneumonia. When I took her in last Saturday she could barely breathe.After 60 mg of morphine she was finally able to cope with the pain. Theydid lots of test on the 2 spots on her lungs but still don't know whatit is. Tomorrow she is going in for thoracic surgery. They are going totake out a sample of what is in her lung. they have already tried 2other types of surgery without success.  While she was there, Dr Meehanwho is the head of the transplant team, Brought his whole class toHillary's room. 20 medical students!! Hillary lectured and was able todo live demonstrations about Graff VS Host disease. Dr Meehan was veryimpressed. Now we have this big argument weather she will be going toDartmouth or Harvard medical school after she get well. Dr Alyea at DanaFarber teaches at Harvard! She still could do it if we can get herhealthy. She certainly has the will to do it if she wants too!! Hillarydid make it to Nicole and Jeff's wedding. Hillary and Jon introducedJeff to Nicole at one of there parties.Well I'm glad I had a nice relaxing weekend. How was your weekend??  Thefall colors are just beautiful this year.  I love Columbus Day weekendbecause I usually can get all my wood in and enjoy the fall weather. Itjust seems like life just keeps on moving by unless we can look past therush and enjoy all that is happening right around us. Thanks for caring.The roller coaster of emotions continue. Lets hope for an improvement inHillary so she can enjoy all the good things that happen around us.

Sunday, October 11, 2009

Lovin' Today

Awwww, I'm loving today. I'm lovin that I"m missed! 
I am interesting and cool enough that a couple days gone causes withdrawals.
 How cool am I? Go ahead just vote me coolest cancer patient ever.
 Want more news? I'm goin to be an aunt, again! My sister and her husband are in the process of delivering child #2: preston. I now have Pierce and Preston Wellington as relatives. 
How could I NOT be cool having family members with those uppity names. 
I feel like I should get dressed up just to see the guy coming into the world. 
We as a family had to do a little intervention since Heather's urge to nest was stronger than the pain of her contractions. I caught her out trying to grocery shop to stalk up the house despite having regular contractions.
I reminded her how pissed she'd be if she got halfway through her shopping and her water broke. All that work would be done for nothing.
She sat on the other line doing lamaze breathing along with a little "Ahhhh Haaaahhh," momma screams.
She ended going to the hospital straight from grocery store, can't imagine why.
Keep your fingers crossed I have a gorgeous healthy new nephew.
 

My Great Escape


My great escape from the ward wasn't what I hoped it would be. 
Maybe I had a bug, maybe the three antibiotics I'm on interacted or maybe my body hates me and wants to ruin the good times in my life, but friday I woke up to get x to school and then fell asleep from 9 to 3pm only to shower, dress for the rehearsal dinner, eat a snack, and take my am meds only to then break into a sweat, throw up, call nic to cancel, devise a back up plan, throw up again, and pass out. 
When I woke up hours later I cried, again. 
These feelings about what I lose or miss due to my disease do not get easier. Each unique situation gets its own grieving session. 
Emotions aren't something you can gain immunity to. 
My feelings are just as upsetting and devastating as the very first time I missed something: maggie's wedding, daisy's baby shower, x's first concert and basketball practice. 
My mind or my heart doesn't care a similar situation has happened before and therefore I am more powerful and prepared to deal with this one.
 Palliative care says this is normal. It's not a sign of abnormal grieving or difficulty coping with my disease. 
I don't know if this brings me solace. I'm really not so interested in being "normal," unless that includes being healthy, then I am there.
I'm pissed I missed out on nicole's glow, big smile, jeff's sweats, and my free prime rib but its all okay as long as long as I'm here to celebrate anniversaries and baby showers.

FYI


FYI: if you are ever told you need a lung biopsy done, do not call your mother and tell her "I'm getting my chest cut open monday."
 A. That is not exactly how it works and 
B. This will probably make her upset, hysterical even, and call the fellow coveribg the case. 
I know, I know. Sometimes I'm a little uncouth.
I should treat dear mom carefully. I'm lucky to have her.
 After I spoke to my surgeon, a dr. Johnstone, Dr. David Johnstone, who by name alone was bred to be a thoracic surgeon (it just rolls off the tongue like James, james Bond, someone smooth, avante_gaurde and innovative), yes I did call my mom to reassure her, first with the "I was born to be a surgeon name" and then with the title "director of thoracic surgery" underneath his name on the card. 
I'm back to where I was a few years back. . . .  a complete and utter train wreck. Just kidding, just a little bit, but I'm back to being back in the mindset that I completely trust the team and their decisions regarding my health.
 I am so excited that I can just relax and trust. 
I am aware of options that span the globe from nyc to germany to india, but dhmc has seen me from the beginning. Its the best place for me to be. 
I was granted a leave for the weekend to participate in our friends' nicole and jeff's wedding. Nic has been planning this since first grade when we listened to nkotb and played dress up. I couldn't let a thoracic surgery and what may be a superbug in my lung get in the way of that.

Summarizing my Stay

At a minimum there is always something amusing about my hospital stays, if not downright funny, and this one is no exception.

Coming in, fighting for breath so hard that I thought my whole body may collapse and give in to the task mechanically was not so funny, but forcing my dad to tape it while I anchored is. . . . . . . special.

When I am determined I am determined and I wanted enough footage to do a PSA (public Service Announcement) commercial regarding why we need reform.

Guess what I got?

Then, prior to any intervention, an admitting clerk came back to get me to sign that I was financially responsible for whatever they were going to do to me.Me curled up in a wheelchair, gasping for breath, only to be stopped by admitting to sign the financial paperwork.

A nurse did come to my rescue seeing I couldn’t breathe.

For all I knew they were going to kick me out the back and have me work it out myself at that point, but I signed none-the-less.

Through my whole ER trip I saw the attending emergency room doctor twice and the admitting clerk after my money three times, and this was an emergent admission for shortness of breath due to a pleural abscess (ie one damn good reason to go to the ER).

It’s all on tape so Linda and her man can now have at it if J has completed his end, transferring the files to a thumb drive and then snail mailing them.

Not that J doesn’t have enough to do being a single father and all when I am in the hospital.

Before my admission X asked me what would happen if I wasn’t around, and I shrugged my shoulders to tell him, not much.

He’d still be dropped off in the morning by a family member, either Nana or Pepere and Meme would pick him up. Daddy would pick him up after school and still coach his sports.

I’ve finally come to a point where I can answer these questions without becoming an emotional wreck. Having me maintain my cool is in X’s best interest.

Life is just not about me here.

Dr. Meehan took over attending on the cancer floor a couple days into my stay, and after deciding on our first day together I was coherent (or so I’m guessing), he brought in a group of twenty or so students.

He warned me in advance there would be a big group. I wasn’t quite expecting that big. Then after he finishes his whole speech to me he looks at me, smiles, then says, “Now teach,” pointing his finger like commanding his pet.

“What?!” I said, shaking my head.

“You know. You remember.” He says, “Like last time.”

Oh no, I do not remember, but slowly it did come back to me, and yes, I did try to commandeer his fellow last spring to teach her using my body.

Last stay, he wasn’t confidant in my teaching methods and had to check everything I was saying for accuracy.

He was confident enough to promote me among the staff that hospitalization to a Nurse Practitioner.

Now, I guess, I’m teaching at Dartmouth as Meehan’s pet. He pointed, said teach, and I did mostly regarding GVHD symptoms post transplant, how they feel, how I cope, and why (GVH has anti-cancer properties that make suffering worthwhile).

Apparently I did what I was supposed to because he left all smiles telling me know they’d actually remember since they had an example.

I have to admit, I liked it. I really miss teaching. I tutored my way through college and was a preceptor as soon as I was hired.

There hasn’t been too many opportunities to teach from my bed except through my writing, without which, I’d go insane.

My alpha caretaker, Dr. Gautier, descended from the clinic that afternoon to discuss the treatment process they were considering and to make me aware Meehan and himself would be consulting Alyea at Dana Farber that afternoon.

I suppose they did since the plan for a biopsy was hatched pretty quickly.

I am impressed by my doctors’ ability to work as a team in my best interest.

I do know that there are other alternate doctors who exist that may choose a different method of treating me, but I am here because I have the ultimate trust that my providers will make decisions based upon their years invested in treating me.

I have seen Dr. Gautier since my diagnosis and I trust him with my life. I trust that if he thinks there is a better option for me elsewhere that he would be candid enough to tell me.

For now, the very best place for me to be is at DHMC, my home clinic, with him and the rest of the team who have been consulting on me for years.

There is a camaraderie and a trust that can not be gained overnight that keeps me here, and I enjoy the comfort of the hometown feel.

October 7, 2009

It is time for me to get up and get moving and yes, I know it’s 10pm.

Lying around and sleeping all night after I’ve been knocked out all day from sedation won’t get me out of here by Fiday will it?

No, now is Super Hillary Training Camp.

I don’t know how many times I’ve breathed a sigh of relief that I was an athelete;and therefore, posess the tenacity and determination to have my body function to a certain capacity in a certain time frame.

Every time I have a setback, it’s training time, with a new goal and a new timeline.

I’m walking around sans any IV pain control. I’m walking and breathing at the same time!

I don’t think I would have gotten up had I not been sucked into watching some cheesy chick movie that has the red-headed woman from Will&Grace in it.

It’s the reverse of Pretty Woman where a woman pays a man to be her date.

I’m still stuck on the Julia Roberts Classic myself, but the movie is worth rejoining the real world for.

Thursday, October 8, 2009

Let the Gang Wars Begin

Let the territorial gang fights begin!
And I thought the problem would be between Dana Farber and DHMC sharing a patient during active treatment back and forth.
So far (knock on wood) this hasn’t been a problem.
I have several fabulous doctors on the case that care more about what is in my best interest than about their egos, and this is why my hometown lymphoma dream team will kick O’s ass.
There would be no patient to fight over if I’m dead people, am I right? Or am I right?
But yes, gangland still exists in hospitals.
Silly me, how could I have forgotten how specialists ram heads.
For example say my three man lymphoma dream team got together on my behalf and decided I need a core biopsy to determine the cause of my pneumonia. The benefit of possibly knowing what could be causing these severe reoccurrences of pneumonia outweighed any risk of pneumothorax to the hematologists. They all know that this pneumonia could rear its ugly head ANYTIME, specifically when I am severely immune-compromised and kill me.
I agree with my doctors. I want to know what ever this bugger is in my lungs.
The radiology staff didn’t agree so much.
And what was more surprising to me is that they told me about their disagreement in no uncertain terms.
DAMN. I wasn’t trying to start a fight. I was just trying to stop this pneumonia once and for all.
The radiologist, as sweet as he is but not knowing the entire case, was perfectly comfortable advising me that with such a small area of density, and no abscess any longer at all, that it would probably be a big waste of my time getting this procedure. My pneumonia would likely resolve anyway.
Well, yes. This pneumonia will resolve itself.
But it will resolve itself without ever clearly telling us what it is that is now in my system so when it comes back, and it will, he won’t be any farther ahead of it than we were in September.
Did he ever think that maybe I was just in it for the Versed and Fentanyl? Why not spend a whole day high. Apparently I like it. The nurse was calling me “tricks” since I play games under anesthesia.
I don’t know what I say but I do know sometimes it leaves the staff blushing.
So maybe that was the whole reason I was risking pneumothorax to get a lung biopsy and my doctor’s were all in cahoots.
Who cares. They gave the order. Do it to it.
UGH. I really think patients should be left out of these conversations.
I actually had to pretend to sleep after I challenged one nurse that I wanted the procedure I was laid out on the table to get.
“Well, your doctor’s need to know they can’t have a biopsy if there is nothing there,” she said huffily.
I squeezed my eyes shut and prayed for the versed. I didn’t know it was such a touchy subject, seeing as I consented, was on the table, and was well on the table to getting the procedure my health care team determined I needed.
I just didn’t realize I was playing with two opposing teams.

Wednesday, October 7, 2009

Blowing Kisses


It is time for me to get up and get moving and yes, I know it’s 10pm.
Lying around and sleeping all night after I’ve been knocked out all day from sedation won’t get me out of here by Fiday will it?
No, now is Super Hillary Training Camp.
I don’t know how many times I’ve breathed a sigh of relief that I was an athelete;and therefore, posess the tenacity and determination to have my body function to a certain capacity in a certain time frame.
Every time I have a setback, it’s training time, with a new goal and a new timeline.
I’m walking around sans any IV pain control. I’m walking and breathing at the same time!
I don’t think I would have gotten up had I not been sucked into watching some cheesy chick movie that has the red-headed woman from Will&Grace in it.

I keep getting stuck on cheesy lines like "The real strength is allowing yourself to be loved" and really feeling them.

I know how hard it has been for me to open up and believe that people truly care and don't have some alterior motive for keeping my company.
It’s the reverse of Pretty Woman where a woman pays a man to be her date.
I’m still stuck on the Julia Roberts Classic myself, but the movie is worth rejoining the real world for.
I am going to Biopsy at 10am!!
I'm excited (as a person can be) to be figuring out what is causing this.
Big thanks to the team who put it together.
You all are rock stars.

The door flung open and I heard, “You’re under arrest!!!!!”
Then there was a long pause before X whipped open the curtain and said, “for impersonating a sick person!”
With a big grin he rushed past the fabric to hop on my bed.
“You know, mom, if I were a cop,” he said thoughtfully, “I’d let all the bad guys go.”
I still hadn’t caught up with his energy. I was still processing his comment about me impersonating a sick person when he told me he was going to let all the bad guys he caught as a future cop go.

It was too much to process.
I just sat, mouth partially open, trying to decide what to respond to, but he was all ready off having given me his mischevious “I-know-you-love-me-but-I’m-naughty” grin.
I have seen that smile so many times before in situations far less innocuous than this.
Those poor boys don’t get half the love of my man X.
This is why I sit in the hospital room waiting to enjoy my few hours spent with family in the evening after work.
X’s emotions range from excitement to disappointed defeat in minutes. It’s amazing to watch the range of emotions that he attaches to his thoughts.
When asked to draw a portrait of himself the other day, he drew four different heads all with different emotions.
When the teacher questioned his decision to draw four heads instead of one, he explained all four heads were him at different times.
Now that is a boy that knows he has feelings.
At least he knows he has them, that’s part of the battle, now having him correctly identify them and react accordingly is the next obstacle.
I know people who in their middle age should receive an award for correctly identifying an emotion. I think we have X emotionally age appropriate, if not ahead of the game.
Yes, my family is what gets me through the day, along with the feeling that somewhere I am loved beyond measure, beyond what I may ever love myself.
It keeps me going, along with my writing of course.
Great since the big health decision has been made.
All the great minds of my case have been put their heads together to form a contingency plan as what to do with this damn nasty abscess.
It’s time to get a “core biopsy” which has a needle, guided by CT, to take out a significant piece of tissue for analysis.
Obtaining a larger sample increases the odds that the information needed to guide my care is contained within the tissue sample.
This is the least invasive way to get the information needed.
If I were to wait and allow the infiltrate to “fix itself” (who knows how long that would take) there is always the danger that the bacteria/fungus/superbug/whatever would still remain in its system and rear its ugly head after my Donor Lymphocyte Infusion.
All the chemo, therapies, and procedures I have undergone have been in hopes of receiving a DLI or Donor Lymphocyte infusion, which is a little like a “booster shot” for my transplant.
As an analogy, people receive a tetanus shot at a certain time; however, if they are exposed to tetanus they need to have a booster shot which contains an altered version of the disease for protection.
I had my transplant and since my transplant didn’t work (I’ve been “re-exposed” to cancer), I need an immune booster to fight that cancer. The booster is my DLI.
Am I explaining this clearly?
I’ll get back to that sometime, but first things first, I’m getting lung tissue removed tomorrow. I may or may not need a drain post- procedure. It will probably be a couple days before results come in to alter my therapy according to results.
It’s hurry up and wait time so I can get back to my family. At least I have my writing to keep me grounded.