Pulmonology Visit

I'm straight off of one fabulous family trip, but before I go into all the fun, fabulous details of our field trip to Boston I'll tell you all about the primary reason for the mini-vacation: seeing Dr. Weinstein, or Weinstock, or Goldstein.

I have so many Drs. for so many problems with so many organs that I've begun to mesh their names together. This has happened since my first clinical trial at Dana Farber in summer 2008. I had the scientific genius guru Dr. Stone mixed with my husband's alpha gastro surgeon at Dartmouth Dr. Murray. I thought I was being treated by Dr. Murray Stone.

It does tend to shock people when they call to confirm I am coming in for a complicated surgery (such as the wisdom tooth I was supposed to have removed this past summer by an oral surgeon) and when they say "I'm calling to confirm procedure X with Dr. Y" I ask, "WHO?"

I just have so many

 surgeries and procedures. Thank goodness for my black berry. I'm finally making an organizational worksheet for my computer. I'll post this in PDF on the sidebar for others when it is completed.

Dr.Weinstein gave me relatively good news! He

says it will be a while before I'm back on oxygen.

Maybe, possibly, this means I could never be on oxygen again.

We read through my Pulmonary Function Tests. The last results are the best my lungs will ever be. I'm functioning at 80% of expected capacity based on the FVC (forced expiratory Vital capacity) or the volume of air I can forcibly blow out. Previously the number was 2.37 L, which I hope is my worst or 63% of expected. Now it's 3.04L. 

Fev1, the maximum volume of air that can forcibly be blown out in the first second of the FVC, improved from 27% of predicted to 31%.

In percentages this doesn't

 look like much, but in quality of life, the improvement has been leaps and bounds. I'm off my couch. I can manuever the whole science museum and Chuck-E-Cheese with X. I'm making plans to enjoy life again.

To maintain the 80% lung functioning capacity I could undergo photopharesis which requires removing my blood to train the wbc (white blood cells) to no longer attack my lungs.

This is an extensive process similar to chemotherapy and/or a transplant and it would not improve my lungs to greater than 80%.

For the record, I will take 80%.

The process of blood letting would be once a week then expand to once every 2 weeks over a peroid of 6 months with treatments all in Boston. 

If I'm interested in anything that could possibly improve lung function above 80% I would have to talk about trials, such as Interleukin-2, with Dr. Alyea to attack my graft vs. host disease directly.

The plan we have settled on now is a 3-6 months prednisone taper. I'm decreasing my dosage by 10mg every month. Starting today I'll be taking 40mg of prednisone daily. I have the option to expedite the taper by lowering the dosage every two weeks, but I don't think I'll take that option.

I'm enjoying the quality of life that has been restored to me. The side effects of the sleeplessness (it's 5am now), the bloated face, and unwanted hair are pale in comparison to going into respiratory distress walking 5 feet to the car. 

On this schedule, my PFTs should be monitored at 30mg which means they need to be repeated in two or 3 months.

I have a Follow up with him March 29 10am 15 francis st.

I enjoyed Dr. W very much. He had a laid back bedside manner. He answered all my questions thoroughly, using my PFTs as visuals so I could understand best. He reminded me to call immediately if I had any change in condition during my taper.

He made me feel reassured and comfortable. These are the favorite feelings I can get from any provider. It's light years away from where I felt in the hospital back in October.

I didn't write much about my

 experience then. I, again, had chosen to do a social experiment on myself. I wanted to know and understand what hospitals are like for people with little or no support system during a severe surgery complicated by a life threatening illness.

My sister had just had her baby so my mother, who is usually at my side day and night, had gone to be with her family. My father was working a great job and really didn't want to be exposed emotionally to the surgery which brought back terrible memories of my lung failure in 2007.

For those of you who don't

 know, I went in to respiratory failure in Feb. 2007 after my first transplant. The doctors told my family I would die and to make funeral arrangements. 

My husband was experiencing the same difficulty coping. He also had our son who needed to be supported and reassured.

And I just wanted to see what it was like to be a "normal" patient with no education or safe gaurds. I was admitted under a surgical team without the hematology team that has overseen me for the past four years, and I went under the knife (well, the scope).

I never expected the experience to be as terrible as it was.

I was admitted to a surgical floor with little or no experience with patients possessing my comorbidities. The staff was wonderful at addressing my chest tube and wound, but could not cope with the manifestations of what we now know as bronchiolitis obliterans.

According to the surgery, I was doing well. I was

 moving. I was peeing. The tube was functioning.

I just couldn't breathe. Despite telling people over and over nobody could make the connection that my lung problems could be occurring for some reason other than the surgery.

To make things worse, even after having three different specialties consult on my pain management: anesthesia, surgical pain management, and palliative care, and collaboratively write orders regarding what I take for baseline pain control of my diseases and what my increased needs would be from the surgery, the staff refused to administer it citing possible overdose.

I have never been in so much pain in my life. I never knew I could make the noises of agony I did. I couldn't cry. I couldn't sob. I couldn't breathe I  hurt so badly.

I also couldn't breathe from the surgery and my BO. 

During my stay, I was told by the staff I was a diabetic and needed insulin. I was put on accu checks every two hours to monitor my blood sugar despite the fact that I am not now and never have been a diabetic.

During this period I learned there was another cancer patient on the floor who had the same procedure as me the same day with the same surgeon who has a diabetic (Never underestimate the patients capacity to find out information. Survival instincts trump everything).

I believe we were confused. I refused all insulin and accuchecks.

As I was being discharged I asked a nurse practitioner about this. She did say it's customary to put surgical patients on insulin sliding scales to meticulously control blood sugars post-operatively since hyperglycemia impairs the ability to heal.

This I understand, but it was never told to me. I was told I was a diabetic.

Very scary. I finally asked (well, my mom when she came to visit demanded for me) to be moved from the surgical floor to the heme/onc floor where the nurses were familiar with me as a whole patient.

At this time, on Thursday) I also asked for an official consult with hematology. I felt everything other than my surgical problems were being ignored. I couldn't breath. My oxygen saturations were going to the mid-80s when I walked (normal is 100-98%). This qualified me for oxygen at home according to Medicare standards. 

I was told by the surgical fellow that hematology couldn't be "forced" to see me.

Silly me, I thought that is what an "order" was and that I didn't need oxygen.

At that point, I was so frustrated, angry, hurt, and in pain I wanted to leave even if only to go directly to the emergency room to be readmitted as a hematology patient.

My saving grace was Doc telling me over and over again not to leave the hospital. Lucky me, I did have an internist by my side the whole time that would not let me do something stupid (like go home unable to breathe), because I had a surgical fellow telling me I was fine.

I felt completely undermined. I felt like what I was saying had no impact on what this quesi-surg had all ready decided. He just wanted me off his docket. Surgically, I was fine.

I never did see a hematologist that stay. I left Monday after quesi-surg's boss showed up and ordered me the at-home oxygen I had been requesting.

What I didn't expect was the psychological ramifications of this stay, of my little experiment.

The fear of having to repeat this experience kept me from seeking medical help for months. I felt like I had been completely abandoned, specifically by my cancer team. I don't understand why I was allowed to undergo a surgical procedure while extremely immunocompromised without a safety net of an internist.

So many things could have

 gone wrong. I could have acquired an infection, gone septic and died. I did develop severe lung complications manifesting as bronchiolitis obliterans, which is life threatening, that was not addressed, because I could not even get a consult for a provider that understood the disease.

I couldn't even get a

consult while in the hospital after a surgery! What, exactly, am I paying for?

To be honest, I've taken this a little personally. I suffered so greatly. This could have been prevented.

When I became ill in December, to the point that I knew I would die without intervention, I kept thinking that the events of the fall could be repeated and that I never wanted to be as scared or suffer as much as I did during those days. I never wanted to feel so alone again. Death had

 become a better option. Dying was better than going back to the hospital.

I know I suffer from post traumatic stress from everything I've been through. I'm glad I didn't let this incident kill me, but now I can only think of those for whom this experience was not an experiment, who really don't have the knowledge or the voice to advocate for themselves to receive the best quality of care.

I hope this inspires some of you to protect and advocate for the sick. I'm so lucky to have such great supporters. Everybody should be so lucky.

First Family Trip

"We don't inherit the world from our parents. We borrow it from our children."

-Fijian Proverb

The first ford family field trip of the new year started with flair.  All Thursday I felt like a kid waiting for christmas. Well, maybe like a grown up

 waiting for vacation fun to begin.  I forced x to go

 to school despite his same feelings of excitement and some play ground bullie

s who got ahold of him the day before.  

Yes, I said it, bullies.

 Big ones according to x, from the second grade that push

and hit. 

X will not entertain telling the teacher so we devised a covert ops plan to get them in trouble. He'll go into stealth mode and lure them to where the teacher can see what they're doing. He won't retaliate. He won't tattle. He'll expose them.

Yesterday he pretended he had "wall time" to stay away from them. I suggested he take his good friends and play close to the teachers but on the day in question his friends were absent or "on the wall." 

I'm sure we all know what

 the wall is. I don't get to hear what his friends did to get there.

 So I puttered yesterday, anxiously, cleaning and making pottery anticipating the trip.   I packed the travel essentials. 

I am a health care travel pro.

I packed the first thing you should invest in for travel: a garmin, sirius satellite radio (second thing or an IPOD full of good tunes), x's nintendo DS along with Lots of activity books and cameras for both of us, of course. 

Alongside packing for the

 travel, I need my mountains of meds. I keep daily meds in a basket. I've also kept them in jewelry organizers and travel toiletry bags so I can pick up and go on a moments notice with some organization. My favorite travel organizer is $19.99 from LLBean and can be laundered if something spills.

 PRN or as needed meds go in my purse (ever wonder why I tote such a gigantic bag around). 

I compartmentalize my drops and lotions for my GVHD symptoms into different bags. Wristlette size works great. 

By keeping everything in portable containers it's easy to pack for a trip or for a family member to grab your meds for review in an emergency.

 Hoping in the car I immediately snapped off the handle to the garmin so it flopped lifelessly around the car.

 Oops. 

I got x from school, and we headed to the bank where he proceeded to take souvenir money out of his savings acct. 

I was so proud watching him fill out the slip, do the math to make sure he had enough and intyeract with the cashier. He's such a little grown up. 

He chattered all the way to nelson where the garmin suddenly decided to drop us, cold, next to a cemetary and tell us we were at steph's house, my cousin and travel buddy with her son Dylan. 

A emergency call to steph got us through the woods and on our way to chuck-e-cheese for 6pm. 

I thought I was being cool I thought I'd suprise x with chuck e cheese. No such luck. He saw the coupons printed and knew it was on.

Chuck-E-Cheese is his favorite place in the whole world. He has tried to have his birthday party there every year since he turned four.

This year I'm hoping for a change.

We met Heather and family at the play area for dinner and games. It was fun watching Pierce, who is 2.5 years, keeping up with his big, cool, older cousin.

The boys were so good with him.

Later at Heather's house where we spent the night, the three spent hours together playing in Pierce's room. We have such a great group of little men.

What really surprised us

 though was how nurturing X and D were to Heather's three month old Preston.

X asked to see his "cute baby feet" and proceeded to talk with Dylan about how adorable babies were while rubbing P's back and snuggling him.

That never would have happened a generation ago.

I know this age has its downfalls, but it has also opened the door so boys can be expressive nurturers and caretakers.

The big event was going to

 The Boston Museum of Science. I ditched out for my appointment so I missed the intial portion, but I made it to the museum in time to eat our picnic lunch in front of the big windows on the bay.

The boys were so excited they ran from exhibit to exhibit, playing with everything and chattering excitedly.

They were not interested in my technical information.

Somewhere along the line I've turned into my dad with forcing knowledge upon the kids.

I always hated when he did that.

Luck was with us. A grant made all omni shows for the day FREE. We saw something on the Coral Reefs, which are among the world's best hope for finding cures to new diseases but are severally threatened by overfishing.

It's estimated that reefs will disappear in thirty years if practices continue as they are, erasing any possibility of new

 medications and life saving treatments that can be derived from them.

Just FYI.

X managed to spend $29.79 at the gift shop on his rock collection and a mechanical arm he's been eyeing since he was four. HE insisted on spending as much of the $30.00 he had budgeted as possible. 

He is one good spender.

Those were the highlights of the trip. I'm so glad I can participate in life again.

Next week, my girls and their families from college are coming for Winter Carnival weekend. I can't wait. I am finally looking forward with happiness and anticipation again.

From a Friend Who Knows

I would never trade my amazing friends, my wonderful life, my loving family for less gray hair or a flatter belly. As I've aged, I've become kinder to myself, and less critical of myself. I've become my own friend. I don't chide myself for eating that extra cookie, or for not making my bed, or for buying that silly cement gecko that I didn't need, but looks so avante garde on my patio. I am entitled to a treat, to be messy, to be extravagant.

I have seen too many dear friends leave this world too soon; before they understood the great freedom that comes with aging.

Whose business is it if I choose to read or play on the computer until 4 AM and sleep until noon? I will dance with myself to those wonderful tunes of the 60 &70's, and if I, at the same time, wish to weep over a lost love ... I will.

I will walk the beach in a swim suit that is stretched over a bulging body, and will dive into the waves with abandon if I choose to, despite the pitying glances from the jet set.

They, too, will get old.
I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And I eventually remember the important things.

Sure, over the years my heart has been broken. How can your heart not break when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But broken hearts are what give us strength and understanding and compassion. A heart never broken is pristine and sterile and will never know the joy of being imperfect.

I am so blessed to have lived long enough to have my hair turning gray, and to have my youthful laughs be forever etched into deep grooves on my face.
So many have never laughed, and so many have died before their hair could turn silver.

As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore.
I've even earned the right to be wrong.

So, to answer your question, I like being old. It has set me free. I like the person I have become. I am not going to live forever,
but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day(if I feel like it).

A Day In The Life

It's midnight and I'm awake. I'm up even after having taken 1mg of ativan to put me to sleep for the night.

The steroids have a habit of waking me with racing thoughts, but some chemical imbalance starts it all by cramping my feet or hands in my sleep.

I awake to them twisted and painful refusing to move back into position until I hop out of bed to walk on my feet and pry one hand open with another, massaging my screaming, contracting muscles.

This is probably from some electrolyte imbalance, probably a deficiency in something.

What? I have no idea, maybe K+ or calcium, but I certainly haven't compensated for it in my diet even with all the mangos I have been eating for my K+ and yogurt.

I'm probably going to need some blood work to discover the root cause of this problem. A chem7 at my check-up Monday would be nice.

Good thing I don't have many responsibilities that this interferes with. Walking at odd hours with weird, painful symptoms is something I've leanred to take in stride.

I just live on my schedule.

Which reminds me, another mom from X's class sent one of the best forwards ever on getting old. It brought tears to my eyes knowing someone else felt the same as I do, that age is part of life and to love the grays since so many die too young to see them.

I embrace the gray hairs popping out of my head, silently celebrating each time thinking, "Ha! I made it to be old enough to get one" or "Yes! I have HAIR!"

I love my time even if it does come with bodily wake-up calls at midnight to eat my comfort food of honey nut cheerios before I can sleep again.

I'll share the forward with you.

It amazes me how close I came to not having this.

I keep looking around the world and wondering what it would have been like if I had let my lung issue run its course.

Everything I've done since this, everyone I've encountered, everything I made would never have happened.

Check the family portraits on the right, my latest artistic endeavor, no, those never would have existed. Many of you may never have known I could draw.

I like to think of them of the new wave, modern portrait or silhouette.

In December the inflammation from my GVHD attacking my lungs had become so bad I was drowning in my own frothy mucous. The cilia in my lungs were irritated by inflammation and being stimulated to make mucous, too much mucous.

GVHD, in essence, is the manifestation of inflammation in organ systems.

The mucous caused a reflexory cough that I didn't even realize I was making. I'd hear coughing, but it sounded like it was coming from someone else.

It wasn't coming from me, not my body. I wasn't in control. The respiratory center had started to take over.

I thought a lot about where I would draw the line in my care at that point.

That is such a terrible weight to have to carry with a young

family, but luckily, the prednisone improved the situation and I don't have to make the decision.

Thanks for commenting Anastasia. You seem so interesting. I'd love to chat sometime. This great inflammation cartoon is for you.

My schedule includes a playdate with my friend BR this am and a trip to Natick tonight to sleep over at my sister's house!

I have big plans for Boston. If I have to see a Doctor I might as well make it a good time, and I'll share my die-hard sick travel tips with you along with the details.

Steroid Induced Mania

I have now officially been taking my steroid, prednisone 50mg, for a whole month. And no, it is not the same kind as conseco or whoever the latest baseball phenom gone bad is. There is a difference between anabolic (for sports) and metabolic (to medically control inflammation) I am in full swing of the benefits and the downfalls of these litle white pills.

I'm calling it steroid induced mania.

The benefit is I'm actually able to accomplish things and live life. The downfall is I want to do everything right now, all at once. 

My mind races in a thousand different directions thinking about a hundred different ideas of what I could do right now at this instant.

If I was an octopus, I would be drawing, knitting, writing on my blog, and making a photo album simultaneously.

My home is finally relatively organized, both floors. The beds are made and the halls passable. I'm getting ready to host Winter Carnival Weekend starting Feb. 6th at my house and my lovely NY ladies are coming with their families in tow.

That would be three families and one couple coming from NY for the weekend to stay at my bed and breakfast. I'm ready and armed. I can't wait actually. 

But then my house is cleaned and recleaned every morning.

 I am accomplishing ALOT of things. I cook muffins in the morning for X. I made Grandma's home made spaghetti and meatballs. I make desserts once a week.

Jon has told me to stop cooking because I'll make us both fat.

Eating is a huge steroid induced side effect. I eat constantly anything in my sight. I try to stick to a health diet but for the first month if anything with sugar was in my path it would be in my belly.

I finally discovered YOGURT, which comes in chocolate mousse, banana creme, cocounut creme and low cal. I also drink water instead of anything containing calories. I eat baked chips and multigrain sun chips. Anything I can munch on.

I need to keep my hands busy at all times.

X and I have scheduled playdates just about everyday. Xander is so chalk full of activities he is trying to get rid of me. He certainly does NOT want to play another game of UNO/Old Maid/Life/Sorry/Candy Land.

He does not want to paint pictures or do art.

We did FINALLY figure out the bakugan game. For Christmas he asked for 30 bakugan from Santa Clause. SC, his elves, and friends came through in  big way with characters, cards, a game board, and all the works.

With an investment like that it had to be played. 

Except it's intellectually complicated. It is a battle game that requires tactically knowledge and cognitive reasoning. Something I'd been missing when I had no oxygen. FIALLY, I've been able to do that.

We're going to Boston on Thursday to spend the night at my sisters with Steph and Dylan.

I'll get dropped off at my pulmonology appointment at Brigham and Woman while they head off to The Museum of Science.

I've been wanting to do a day like this for so long, it's great I've been given the capacity to do these things.

I try not to let the reality that I'm going to have to manipulate my medications, and eventually decline, get in the way of how I feel now.

Steroids do cause mania. They can cause psychosis. It is adrenaline. Every once and a while, I feel a panic rise or I get angry in a full bodied physiological way I never have before. The alteration in levels causes osteoporosis. I will eventually start having fractures with long term use.

I have all ready lost a millimeter in the root of my teeth. I had to have my front teeth wired together to strengthen them and keep them from falling out.

I don't even want to know what the rest of me looks like.

I've been unable to take bisphosphonates (such as boniva like Sally Field) because with these medication comes the risk of osteonecrosis of the jaw.

If I were to have a dental surgery in the future, such as getting the wisdom tooth out that needs to go, my jaw could erode and fall apart. Prior to bisphosphanate treatment, I need the tooth out since it poses an infection risk. Ugh.

That's why I can't keep my prednisone forever, but for now, life is good. I'm off to enjoy it.

Update From Dad

Hi to all Hillary supporters

I have got to say I am again astounded how Hillary has rebounded with the steroids. A month ago she could not walk from the house to the car- About 15' with needing oxygen. What a miracle we have seen. I don't know how many people were praying but her recovery is unbelievable. She has energy again. She has something scheduled every day this week. She is now even taking a pottery class. She is back doing some very creative artist projects. Photography from someones eyes that didn't expect to see how beautiful life is around her. It's a whole new perspective. She is not going to let another day go by with doing something. She has sat around the house in quarantine or without energy for way to long to let any day slip away. I can't believe the difference a month has made. On Dec 22 The doctors wanted to put her in the Hospital to keep her alive!! She was determined to spend Christmas at home. We were all deciding weather to pray for her to go quickly and peacefully so she wouldn't suffer any longer or to ask the lord to make her healthy. I never thought she would recover!! She has made a Miracle recovery. She found the right Doctor at Dana-Farber that has seen lungs with this fibrosis from many transplants. Dartmouth had not seen many.

Hillary's face is puffy from the steroids but that is all you can see. No outward signs of the cancer. 2010 has start off with only positive signs. I can't begin to express my feelings of relief and emotion for what has happened in the last month. We have always had faith but we were severly tested. The power of powerful thinking and lots of prayers, and a Novena or 2 from my mom has put us over the top. We really do appreciate your support and prayers to get us through. It's like the foot print in the sand. We have been carried by all of you.

Thanks

Vic, Nancy, Patrick & Grace, Allen, Pierce, Preston , Heather, Jon, Xander and especially Hillary

The Shrink and the Increase

The Shrink and the Increase

Chemical Dependence Fairy Tale

I'm finally accepting my life in it's current state, and with that, finally, has come the understanding and acceptance that my body is reliant on medications to function.

I'd always hoped I would be able to lose each pill. I thought, maybe, one at a time they'd fall away until I took nothing but a couple supplements to improve my well being

That is not the case.

Since my allogenic transplant, it seems like the amount of drug regimens, not singular medications, that keep getting added to my body are increasing exponentially, adding more chemical components and financial strain with each pill.

After transplantation, I was placed on a series of "prophylactic" medications to prevent infections. These included Bactrim, to ward off PCP pneumonia a common type in the community acquired among the immunocompromised.

Then there was the acyclovir three times daily to prevent viral infections.

Folic Acid at 1mg was added to improve my red blood cell health by aiding my body in the creation of erythropioetin. This keeps me feeling healthy and vibrant, without the supplement my oxygen carrying capacity is diminished and there goes my joi de vivre.

I've taken my lexapro (an anti-depressant) religiously since I became aware that my disease would likely continue to return.

I didn't realize I would be taken these years later to maintain my health.

I certainly didn't predict that MORE would be added to counteract the side effects of graft vs. host disease and all my other treatment acquired illnesses.

Just like you never really know what you have until it's gone, you never really know what you're getting until you have it or know where you are going until you are there.

I have finally accepted that I need pain control to survive with any quality of life

Narcotic pain management was something I resisted like the plague during my first transplant not wanting to be both an invalid and a drug addict.

My outlook was also different back then. My goal was to go back to work, get my master's degree, and live a long healthy successful life with my family.

After recognizing the reality of the situation, that my cancer will likely return and in the interim I must actively control my graft vs. host disease, specifically the bronchiolitis obliterans, my mindset has changed.

I also have palliative care to thank for this.

Society puts a huge stigma on those who rely on pain control to function as contributing members.

I've finally accepted that if I want to be happy at all and enjoy the life I have, and to make any positive impact on those around me, I need to be comfortable.

Pain has been a huge issue through out my treatment. It impedes the healing process by placing stress on the body during a period when the body needs no further insult.

It took a whole team of providers asking me, "Really, Hillary, do you want to cut down on your pain control? You have a lot coming up. You have BO. You're having trouble breathing." to get me to realize narcotics were part of my long term life management plan.

Thank goodness for them. I no longer feel guilty that my body requires these medications to live. I can now take my pain pills daily without guilt, like I should be hiding in a corner with the criminals.

Palliative care has also empowered me to view my disease process from a different angle.

The vast message I receive is to fight this disease to the end, do or die, it or me.

That tactic is painful, exhausted, and has yeilded awful results for the last four years.

I'm fighting, but I'm not being consumed by the fight. It's sidelined.

Cancer has finally become an after thought to what I'd like to do right now, today, with my time. As my practitioner told me, it's my time, my energy to do what I feel is necessary.

She told my a great story about my Pepere who died over ten years ago from lung cancer.

During his treatment, he decided to go ride his bull dozer for four hours.

He loved his bulldozer. It was his life and livlihood. He built an entire excavating business, funded and raised a family using the skill and love he had for that machine.

He loved it so much that the family said nothing even when he was diagnosed with narcolepsy and would fall asleep at the wheel.

More than once I caught him teetering off the edge of a mountain, asleep in the cab of the bulldozer as it threatened to plummet dangerously down the side of the mountain.

HE was fine with going down in a blaze of glory with his trusty dozer, and we had to be okay with it too.

It was his life. He would die how he wanted to.

But my memere wasn't so pleased that four days later Pepere was still exhausted from his big four hour dozer jaunt.

She called up palliative care asking them to talk some sense into my stubborn grandfathher.

When the practitioner picked up the phone with Pepere she asked, "Well, Was it worth it?"

"Every single second." he said.

"Then go back to bed and rest." she replied.

I'm sure he felt then the relief I do when I'm given permission to feel exhausted, over extended, and told it's okay to be sick. It's okay to accept your disease. It's something so few of us hear, and it lends to fear.

I don't want fear running my life anymore than I want my medications running them.

But while I'm surviving, my medications do.

The list continues. I no longer have one system that works without intervention.

My bowels are controlled through a laxative taken twice weekly, marked on a calender so I don't forget when I movement. The same with my vaginal walls which atrophied due to a combination of menopause and chemotherapy.

Apparently it was true when my husband told me if I "didn't use it I'd lose it."

I just thought he was trying to get some play.

I now take an estrogen cream bi-weekly so the nerves do not come to the surface causing severe pain with movement.

My eyes are kept dry and relieved from constant burning through the use of hot compresses twice daily and artificial tears 6 times daily.

For my graft vs. host disease I am now on prednisone, which condensed 20 drugs used to treat each part of my body symptomatically into one.

At night, I take another antibiotic, zithromax, to protect my lungs from the BO.

Without the prednisone, my BO requires a series of medications and inhalers totaling 6 without which I would die.

Hearing myself just type about my medications, I wonder how I have time to manage anything else.

My health is a full time job.

Last night, I was thinking how scary it would have been had I never been exposed to these twenty drug regimens before becoming ill. I was lucky to have had some experience in renal transplant at montefiore medical.

Not only would I have been sick and depressed, thereby function at my least effficient capacity, but I would have been given a whole new way of living to learn.

Coping with the disease is hard enough. Learning how to protect yourself is vital. It would be great if patients just had to deal with what is happening with their health, but then there is a whole system to navigate.

At your worst you are thrust into a whole new culture.

I've been thanking someone at DHMC Norris Cotton all week in my head for pre-authorizing eight of my medications through the insurance company.

I can only imagine the work she had to do to get them covered for my co-payment.

She's clearly a miracle worker.

Thank goodness for all my medications and people like this so I can live my happily ever after.

CATASTROPHE!

It's a catastrophe!

Health care reform is falling apart everywhere.

The special election on Jan. 19, 2010 of Republican Scott Brown as the new Mass. Senator, replacing former Sen. Ted Kennedy, a pillar in health care reform, erases the 60 democratic vote majority needed to thrawt a filibuster.

A filibuster is "speaking or talking out a bill." It is a form of obstructing legislation to delay or prevent a vote entirely.

The whole issue could be closed.

The debate on health care reform has been heated from the start with the one, fortunate binding aspect between parties being the agreement that our health care system is in need of repair.

We have the most expensive system of the industrialized world while our infant mortality rates rival that of El Salvador.

The major concern is where our current money is going and how to fix the system to function as quickly, efficiently, and cost effectively as possible so every American receives quality health care.

It appears we all agree on the goals of the system.

From there, nothing seems to be agreed upon.

Even as a staunch supporter of health care reform, I see the opposite side of the debate.

With the democrats in control, health reform became almost a coup.

The reform vote which took place Christmas eve that resulted in a 60-39 party-line vote became an example of individual representatives' greed as long time Democratic representative supporters became desperate to obtain the 60 necessary votes and made "sweet heart" deals with conservative party members.

However, the vote seemed to clear the path to enacting the bill into a monumental law comparable to Social Security in 1935 and Medicare in 1965.

The bill would provide insurance coverage to 31 million uninsured people, adding 15 million people to medicaid and subsidize coverage for low and middle income people at the cost of 871 billion over 10 years according to the federal budget office.

It would also greatly expand the role of government in health care, as well as require American's to obtain health insurance.

To fund the overhaul, the Senate bill increased the medicare payroll tax on high-income people and levied a new excise tax on high-premium insurance policies in hopes of controlling costs.

Hostility towards insurance companies was a theme among reformists. The bill would establish strict federal standards for an industry that has been regulated by states since it's inception. This simple aspect has impeded the ability of consumers to hold insurance companies liable as they practice over multiple state lines and regulations vary state-to-state.

Under the bill, insurance companies could not deny coverage because of a person's medical condition; they could not charge higher premiums because of sex or health status, and could not rescind coverage when a person becomes sick or disabled.

The government would also limit the profits insurance companies could make on illness by requiring them to spend 80-85 cents per dollar on health care.

Problems have arisen in every aspect of legislation, but primarily in how the changes would be paid for.

Costs of the bill would, according to the Congressional Budget Office, be more than offset by new taxes and fees and by savings in Medicare. The bill would squeeze nearly a half-trillion dollars from Medicare over the next 10 years, mainly by reducing the growth of payments to hospitals, nursing homes, Medicare Advantage plans and other providers.

Republicans asserted that the cuts would hurt Medicare beneficiaries.

It could also result, again, in cost-shifting towards hospitals.

I am a staunch supporter of an individuals' protection against "purging practices" by insurance companies to increase their profits.

As a Registered Nurse and Patient, I'm appalled by the exploitation of my illness and suffering for profit. I have been the victim of purging on all forefronts of insurance.

I was dispelled from my life insurance coverage 6 months after my diagnosis with Hodgkin's lymphoma when the policy changed hands from my employer to myself. Everything I had put in previously as a healthy payer was profit, and my family no longer had a safety net in the event of my death.

My long term disability insurance company did one worse, not only did they purge me, but they sued for the return of their money citing one sentence in the policy that reduces your payment when you receive social security.

After ten months of full payment, they requested the return of $8000.

Three and a half years later, Reliance Standard again tried the same trick. This time they said my social security payment for my son needs to be deducted from my payment and anything sent repaid.

This would require me to pay over $20,000 to the company during a period of time when my family is coping with the reality that I will likely live a short, uncomfortable life, dying eventually from side effects of my cancer or treatment.

It is also a possibility that in my battle we will meet our insurance maximum spending amount of 2 million dollars, at which point insurance will no longer cover anything.

The proposed bill would erase maximum limits imposed by health insurance companies.

I will never have the ability to return to work as a Registered Nurse due to my illness, a cancer which no one knows the cause or the cure.

I agree that the bill isn't perfect, but over sight is needed to stop the predatory practices of exploiting people when they are at their weakest, most vulnerable point.

I'm in hopes that the popular parts of the bill can be salvaged, and the rest continued to remain a topic of discussion in hopes of encouraging agreement across parties.

Why do We Suffer?

It's Sunday.

On Sundays before I generally reserved my posts for news on the news, thoughts on the news, and experiences with the health care system and the need for legislation.

I thought of my Sunday Post a little like the Sunday Paper.

Except in "The Blogosphere" the highest readership times are on Monday. I'd save a good one for Monday too. Mondays are the online Sundays.

That was when I had the capacity to organize my thoughts. That was before the "chemo brain" I've been so desperate to avoid took over.

Now I just write, but today I've realized, I've never really dealt with religion, spirituality and faith head on.

I've courted the ideas. I've mentioned my spirituality. I've definitely put my beliefs in the forefront, but I've never put what I think is true in black and white.

I didn't want to sound like a preacher or Holier-than-thou.

Except, I am religious, and Sunday is the Holy Day.

For me, it would be impossible to face the depth of human suffering and constant threat of mortality in my life stoically without a spiritual foundation.

I would have cracked a long time ago. I would have lost my mind. All you would be reading here would be incoherent meanderings.

Thank Goodness I have faith.

Through every treatment, from tumor to diagnosis to today, I've held closely to my faith.

I believe their is a divine being that directs a moral code which we all must follow to join in an afterlife better than the life provided here.

I also believe that sacrifice and suffering are part of the redemption that will ultimately lead me to a better place, life everlasting without the restrictions of this body with my constant pain.

When I was first diagnosed, I thought I was being punished.

I know I'm not perfect, but I try to be good.

I was raised Catholic and have remained loyal to these tenants throughout my life.

I was confirmed into the church (made official) in high school after my parents had stopped forcing the issue.

I have prayed a meditated on the rosary to understands the misfortunes of life. The Rosary is a dedication to Jesus' Virgin Mother Mary who conceived him through divine relations with God.

Dedication to the rosary comes with promises of certain graces, such as the promise that you will never die without first having the Sacrament of the Sick or being allowed to confess.

These rituals are important to my faith since it ensures that my soul will be free of sin when I present for judgement.

In all my periods of illness, I have received these gifts. Mary has never once failed on her end.

I have though, like many people, I've practiced religion "buffet style" for years.

I pick a little of what I like from here and there, a little of what is convenient, and try to get away with the rest.

I do the best I can.

What I try to do is live life under the Golden Rule tenant to "love everybody as yourself," or if this doesn't work, since there are many times I love people more than myself, treat others like the one I love the most.

Of course, I've just said all the things I have done to remain devout to my religion. I didn't mention all those "failures in judgment" i.e. the anger and indulgences. I certainly have much to be forgiven for.

Secretly, and this is a confession, I've always wished I had the stamina to be a saint.

I don't know why I feel so silly about this.

Probably because I've done so many naughty things.

But it turns out it is far easier in life to be bad than good.

Despite not quite reaching sainthood (at least not yet) my faith though has provided comfort where I have found none other on earth.

When I am alone in bed and suffering, I have a foundation that says this is happening for a reason.

What's the reason?

With all the catastrophes on earth it's easy to think that it's one big punishment.

I know I did during my "Why Me?" stage.

I thought about what I could have done to deserve such awful treatment, but always in the back of my head there was what I had learned as a child, the idea that only those who can handle the trials receive them.

I began to believe that I had been diagnosed due to a trust.

I thought about the Book of Job, the Chapter of the Bible that deals with a religious man who is wagered between God and the Devil.

God says to the Devil that of all the men on earth, Job can be tried and not sin. He allows Satan to have free reign on him, killing his entire family and taking away his livelihood, but leaving his body untouched.

The Book of Job follows his suffering and how he copes.

It's refreshing to see that he questions God and mourns like all of us, what he does not do is curse him or take his suffering out on others. In doing this, he proves his love.

Suffering is about love here, at least that is what my experiences have taught me.

It is about self sacrifice so others may not have to endure what you have faced. It is about alleviating the suffering of others through "bearing the cross" yourself.

In Christianity it is said God gave up his only son, Jesus, to show that he loved the world and did not want them to suffer punishment.

With the death of Jesus, the gates of heaven were finally opened where they had previously been closed by the original sin of Adam and Eve. Jesus' death opened the doors so the good could pass through and share in the joy of God for eternity.

I keep hoping for eternity.

Pope John Paul, in his explanation of Human Suffering, says "Love is also the richest source of the meaning of suffering, which always remains a mystery: we are conscious of the insufficiency and inadequacy of our explanations. Christ causes us to enter into the mystery and to discover the “why” of suffering, as far as we are capable of grasping the sublimity of divine love (Salvifici Doloris §13).

In the years since my diagnosis, I have been blessed to see the depth of love that can come from people in all walks of life when confronted with tragedy.

It's refreshing to see that from suffering can come good if we only now what to look at and appreciate. I have never before felt closer to a divine love than when I have been ill and comforted.

The love then is pure and unassuming. All vanity has disappeared. Selfishness is removed. Distractions fall away. All that is left is what is being felt within ourselves.

This feeling is what has allowed me to feel blessed when my body fails me, and all I can do is lay silently with my thoughts.

It is this that has kept me going, the knowledge that unconditional love exists and the hope that others can experience it like I have.

Keep The Giving Going

Keep the Giving Going through 2010.

A blood Drive is being held Monday Jan. 25, 2010 at the Newsbank Conference Center in Chester VT between 12-5pm.

Donors must be at least 17 years old and weigh 110lbs. They must also be free of any communicable, blood borne diseases.

Donors will receive a coupon for a pound of free dunkin donuts coffee.

When giving blood, Be sure to check off the box to become a bone marrow donor. You could save a life. Someone saved mine.

For more information call 1.800.GIVE.LIFE or visit www.redcrossblood.org

By now I'm sure we've all heard of the tragedies that have befallen Haiti.

Please remember The Desrosias Family in your thoughts and prayers. They have lost their home and two family members remain missing in the earthquake.

To donate to the Red Cross Relief efforts just text Haiti to the number 90999. $10.00 will be added to your next phone bill.

My New Pulmonary Function Baseline

As predicted, my mania at 3:30 am caught up with me.

I passed out cold, in my clothes, at 6:30pm without taking my evening medications.

The day that preceded the collapse from exhaustion was well worth it though.

After ten years of dating and five years of marriage, it was long over due for some mother/daughter-in-law bonding time.

My mother and law and I had never once before put aside time for just the two of us to get to know one another and how we think or what we like.

Suddenly, we've found ourselves at similar places in life.

She stopped working this year and has been helping us immensely with Xander, but her days need to be filled.

I'm finally feeling better. I can breathe, my pain has decreased, so not only can I hang out, but I could possibly even be enjoyable.

Who knew?

So we set up a date in the context of getting my pulmonary function tests done at Dartmouth.

After almost four years of treatment at Dartmouth, it was Becky who showed me that they do, in fact, have services for the handicapped to get to their appointments.

If you arrive at the main entrance, they will park your car if you are disabled and wheel you to your appointment!

What a relief!

I didn't think I'd ever be able to go to the hospital independently, even if I was capable of driving, due to my lung issues that prevent me from walking long distances.

Now, I know I can.

You learn something every day.

It was a big test day too. It was the day I was having my pulmonary function tests that would determine my new baseline lung capacity.

The new test readings are the best my lungs will ever be after years of chemo, radiation, and cancer.

Certainly not a test I wanted to fail.

My pulmonologist at Dana Farber, who I see Friday Jan. 29th, stated that my lung disease was probably a combination of multiple pathologies and processes including bronchiolitis obliterans (BO), BO with Organizing pneumonia (BOOP), maybe another infectious process.

He also cited the fact my lung had been directly radiated. This probably resulted in the fibrotic (dead or scarred) lung tissue that no longer perfuses in my right upper lobe.

This is the same area I have a pneumothorax.

A pneumothorax is a collection of air or space around the lungs. It can be caused by COPD (as in my case, bronchiolitis obliterans), asthma, cystic fibrosis or TB.

Symptoms include chest tightness/pain, shortness of breath, nasal flaring, easy fatigue, rapid heart rate, low oxygen saturation.

Since my pneumothorax lives in the area of dead lung tissue it doesn't bother me. That portion of the lung isn't functioning anyway.

I found a great site for interpreting the results of pulmonary function tests, if anyone ever wants to read their own. It's from The Cleveland Clinic http://www.ccjm.org/content/70/10/866.full.pdf+html

I know I improved!

I'm breathing better for starters. That was a give away. I'm not lugging around a ten pound jug of oxygen.

How much? I think he said my lungs expand another 3/4 of a liter and perfuse 144mls.

Forced expiratory volume (FEV) was 3.04. My predicted was 3.79 based on age, hemoglobin, etc.

Forced expiratory volume over one second (FEV1) was 1.01. Predicted is 3.23

The ratio of the FEV1/FVC equalled 33.05. Predicted was 85.07. That's in a normal, healthy young woman though.

That woman is not me.

My perfusion capacity, or the ability of my lungs to absorb oxygen across the tissue membrane, has improved to near normal.

When I was in distress, I could feel my lungs refusing to accept the oxygen, refusing to comply with my breaths.

I would breath and the air would hit a wall, literally. Breaths are supposed to flow nicely to healthy tissue and diffuse.

Mine did not. I'd breathe but nothing would happen.

The news is not fabulous. I'm not entirely NORMAL, but I'm probably never going to get that anywhere.

What exactly is normal anyway?

At least the respiratory techs were good sports about my blog and took some pictures you could enjoy.

I also did have the mom date, which went so well we plan on doing again, maybe with Alexis and Xander this coming Friday. Since I have to go anyway to see the pulmonologist, we thought we might make it a field trip and meet my sister at the Museum of Science or Children's Museum.

Whichever.

Thank you Johnson Law Group

Baldie's Blog has an official sponsor!

Thank you so much to Johnson Law Group for supporting my battle with chronic lung disease.

Johnson Law Group has experienced attorneys specializing in mesothelioma.

Mesothelioma is a cancer that is linked to exposure to asbestos.

Asbestos was once commonly used in ship building, as a component in plastics, and as a construction material, most often as insulation. It is still prevalent in many homes today.

If you or someone you love is suffering from mesothelioma, the Johnson group would like to help you get the hope and justice you deserve.

The Johnson Group can be viewed on their site at www.johnsonlawgroup.com

Take a look to the right sidebar and under the heading "mesothelioma" you will find The Johnson Group's contact information.

X's First "Date"

It's 4:40 in the morning.

I woke up at 3:15 am.

This is one of the downsides of prednisone.

I wake up and I eat. Then sometimes I can go back to bed satisfied. Other times I am just too anxious to relax.

Prednisone stimulates the adrenal glands giving the taker a never ending adrenal rush. Think about how you feel when you encounter roller coasters, spiders creeping up on you, bungy jumping, your crush or love, and nightmares.

Then take that feeling and multiply it by a minimum of three and keep it for the duration of your pill popping.

That is the equation to how I feel.

I LIKE IT!

Well, to an extent.

Taking this medication reminds me of who and how I was before my illness.

I was so energetic, go, go, go.

Well, I guess if that version of myself woke up at four in the morning to write a book and a blog, paint, manipulate photographs, cook muffins, and make smoothies then I would be back to my old self.

Okay, so I am really a manic, hyped up version of the former me.

I have stopped, for the most part, trying to get back to the young, fresh, twenty-one year old version of myself.

I think we'd all like to get back to that point in our lives sometime no matter what our situation is.

Taking cancer out of the equation, I have aged four years since my diagnosis. I have settled down with my family in the country. I have a loving husband, rambunctious son, dog, and cat to care for.

My lifestyle has changed.

Determining which changes have been made due to normal, happy life changing decisions and the insidiousness of cancer is impossible.

I like to tell myself they are all for the better.

Speaking of happy life changing decisions, I bet you loyal readers (I've heard some of you like to check me every night. I love that. I think it's a huge compliment. I'm sorry for my abscence and hope you'll return to normal reading dedication) would like to know how X's "date" went.

He certainly has grown up over the postings on this blog.

I can't believe I've been chronicling our journey since August 2008.

It's so cool to look back and see where we were, what we were doing, and how we were coping as a unit at any point in time.

I hope he finds the same comfort in this in the future that I do.

I didn't think I'd be as nervous and jittery as I was in preparation. The prednisone didn't help.

I wasn't exactly "dreading" the experience, but I wasn't jumping for joy either.

I did use his excitement and anticipation to get as many chores out of him as I possibly could.

He vacummed. He put away the clothes. He organized and picked up the entire house. He brushed the dogs.

In the morning, he scrapped the snow and ice off my car like his life depended on it.

At 2:40, I found myself hesitantly dragging myself the half mile to X's school to pick him and his friend up.

Before X ever dared label KA his "girlfriend" he did stop and ask my permission.

We had a discussion about what exactly a "girlfriend" was, what they did, and how they behaved.

I told him my concerns that he would be distracted from school and this relationship would take away from other friendships he could be developing.

I do believe six is a little early to have this distraction, and under other circumstances, I may have not allowed it.

But then I saw that special glow, and I said okay, as long as she was just a "special friend" and there would be no touching going on.

That's when they started talking on the phone.

A few months later, here we are, having a playdate.

Now I have a little bit of an idea how it feels to be a parent policing a boy. I wouldn't/couldn't let the two out of my sight. I didn't want them hugging, touching, or snuggling.

I wanted them to act like normal friends.

It was working well. We were taking a walk. X was giving her the tour of our trails. She was meeting the dogs, Nika and Lily. She also met Nana (my mother) as she drove to go to her house.

Then KA asks, "Do you know Xander has a girlfriend?"

Aaarrghhhh, aaaghhhhh, yuck, Nooooooooooo.

I didn't want to hear it. I had heard it enough from Xander, but now, it was being confirmed by the sweetest, cutest, little blond haired blue eyed tomboy.

"I thought you were Xander's girlfriend." I stammered out, whincing, that my baby, my child, was crushing on another at just six years old when I was still supposed to be the love of his life.

She giggled and shook her head "Yes," as if she had never meant anything so sincerely and eagerly in her entire life.

This was an opening.

As a parent, I had to take it.

Both of them were getting the same talk I had given Xander. Maybe, I could use this as an opportunity to guide them while they were still interested in my guidance.

"Now, what, exactly, do boyfriend and girlfriends do?" I choked out.

KA stood up straighter. X looked at me, then put his eyes to the ground and started to fidget, first with his feet in the snow and then with his gloves.

"Well," KA lit up, "We get to talk and really get to know each other, EVERYTHING ABOUT EACH OTHER, and then let the fun times begin."

Ahh, okay, it sounded like KA's mom may have had a similar talk to the one I had with X.

Speaking of KA's parents, Luckily, when I was setting up the play date I found out that I all ready knew them. Not only are they a part of another big french family that has taken over Charlestown whom I've known forever, but we coached their older son in soccer a couple years ago.

It's a small world and we live in an even smaller town, but there was still the anxiety that he had chosen someone that I somehow could not background check.

There wasn't any background check necessary. Actually, I let out a big sigh of relief when her mom told me who she was. Watching Xander have a first special friend is hard, but watching him choose someone from a family with entirely different moral values would have been terrible.

It's crazy to see that maybe freud had it right, X picked a girl with a family very similar to ours, and he is only six. I guess this goes to show the raw data we use to pick our mates when nothing other than love and attraction enter the question.

In the first grade they certainly aren't thinking about if the other is responsible enough to support the other, if they'll be a capable provider, or if they will be a wonderful parent.

Then something clicked "Wait a second, what fun times?" I asked, even toned despite the frantic freak in my head starting to yell about hormones and what they could possibly try.

"Like playing." KA said, as if the answer was the most obvious thing in the world.

"Do boyfriends and girlfriends touch?" I asked. I had to go there. This was a boundary I wanted set. There are so many poor role models to be found in the media, and even among other parents, that I wanted it to be clear they were friends with special feelings.

"We can hug and hold hands. I try to cuddle." said the sweet, innocent looking little girl.

Again, the mom voice screaming at me in my head, "They're touching! No, no, no." I may have been okay with hugs. Hand holding was pushing it a little bit, but cuddling!

Xander is a snuggly kid WITH ME AND DAD. It was looking like KA was affection too, hopefully, in an innocent loving way.

It was boundary time.

"Actually, touching like that isn't allowed. It's okay to give hugs when you see each other and when you leave. To make sure of this, I'm going to chaperone you both all the time. I think it's important that you talk to each other and enjoy each other's company like really good friends."

Again, I was trying to control my breathing and show I was in control. This first grade romance could be the template for relationships in the future if I can just make in imprint on the tablet of their lives and their relationships in a positive manner now, maybe later life will be good to them.

But the chaperoning thing definately took energy.

Back at the house X had to show KA every room. They ran back and forth and back and forth before finally settling in the upstairs play/guest room for snacks and a movie.

They picked "Anastasia," which is also a favorite of mine, for background entertainment while they played dress up.

Xander dressed like the black GI joe. KA was a princess with a long pink dress, jewels, leis, and a fedora.

All in all, it went well for everybody.

I think she is adorable. I won't be posting her face out of respect for her family. I didn't ask permission, but I'd love for you all to see her.

She is petite with fair skin, blond long hair and blue eyes, but she's still a tomboy who can hang with her three older brothers. She managed to keep up with x when we were exploring in the woods and stay standing on the snowboard when they were sledding.

I'm actually hoping, just a little, that this will fizzle so they can revisit each other when they get older.

At least he's off to a great start.