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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Sunday, July 31, 2011

I know why the sick smile

The beautiful thing about being gravely ill, miserably ill, seriously ill is that when you recover, it's an indescribable wonderful feeling. It's absolute elation recovering what you'd lost or struggled with. 

For a while, I feel free. I suddenly feel powerful again that I can breathe easier and love just moving, twirling and taking breaths without losing them or struggling. 

Having this past week's GI illness, I was miserable, in uncontrollable pain, sleeping more than awake and wondering if these vague symptoms are permanent. Maybe that's what separates the feeling of elation when I heal from the feeling of "whatever" when someone healthy recovers. 

When I was healthy, I pushed myself to recover, pissed that feeling sick was interfering with whatever I had planned. I mostly ignored the problem, complaining, knowing it would go away eventually.

 Now every cough or sniffle could be the door of the pearly gates slipping open. I appreciate recovering to a point I can get out of bed, shower, and get in clean clothes. That's success.

 I generally can fake health to get x ready and off somewhere. Last week, for the first time ever (believe it or not) I overslept an hour past when the bus gets x. He said he tried to wake me up....... Sure he did. 

All this sickness also makes me appreciate the daily grind. Getting x off to school, the am scramble which some people loathe, is an exciting bonding time in our day. That's because I know I'm lucky to have these moments. 

Recovering is even better. Finally my body is comfortable again (or at least tolerable) and I can do things, simple things, like go into society to get my own milk, make meals etc. If I'm well enough to grocery shop, that's a big gold star for me. 

And guess who did just that? 
You guessed it. My husband. 

Just kidding. He did do preliminary shopping when we got back from our trip. I was able to do a quick trip to get the rest with the help of my mom and two 8 year olds in tow, of course.

On the upswing, I made my bone marrow soup. I haven't replenished my chinese tea concoction since july and aug. are awful scary bill months. And by awful and scary, I mean, worse than usual. 

Aug is birthday month for j and I (the 17th and 16th, respectively) which means car registrations and inspections and repairs that may come with that, like brakes and a rotor for j's car and brakes for mine. 

J's getting is hands dirty to fix his own car with his dad helping and hopefully x watching. I always wanted to know how to repair cars. I can't even change my oil (I can change a tire). I want x to know cars and more than basics.

 Then we have bi-yearly insurances and taxes, back to school stuff. It's awful every year but at least I'm healthy enough to enjoy it. 

Sorry for the tangent, the bills are just the first major stressor that pops back into my life after struggling to gain livelihood back.

I guess that is where the tangent came from, who knows?

At least I know why the sick smile and sing on their good days, even if they suffer more on their best day than most other's will ever. I'm lucky to know the secret and to have the feeling, the joy or healing.

Friday, July 29, 2011

Get That Virus Gone

I'm finally coming around..... A little. I feel druggy and fuzzy since I've been making myself druggy and fuzzy with little relief, especially from those over worked intercostal muscles, the ones that assist my lungs as I'm try to gasp in air. 

I'm like a guppy a lot of the time. My head lifts up to open the airway and I gasp, gasp, gasp for air. It's very scary (obviously) and painful since this over works the surrounding muscles. 

This is why people with COPD can get a barrel chest, too much exercising of the wrong muscles.

 I wish I had an algorithm to determine how long I'd be out of commission and what exactly would happen with these episodes. I guess I can call this one a virus, and it isn't life threatening, just painful.

Now that I've been treatment free for a while I amm starting to tell what will be chronic pain from side effects, like COPD.

Sadly, I'm still in a lot of pain. Pushing through to strengthen isn't going to work this time. I'm relying on herbal tinctures and my bone marrow soup.

The first soup I made helped.

 Since then, I've had amotivational syndrome in the worst way, probably from those cesamet pills that used to work so well. Now, they're just putting me to sleep.

I have anhedonia (there's one for your inner dictionary) where nothing seems to bring me joy anymore, and I don't know why. Maybe it's a combo of illness and depression. It's hard for me to tell the difference. 
Beef bones for marrow soup

Is it illness or is it depression keeping me in bed? I often tell myself it's emotional only to over tire and sicken myself further. Its hard for me to tell. 

I've been so tired I've only been waking for x, when he wakes up, and catering to his in and out. I see Dr. G Mon. I can't believe Aug. Came so quickly! Here is to hoping this virus gets gone and praying my energy will come back.

Thursday, July 28, 2011

Remembering to be Grateful

These past weeks, every time the aches or the pain started to get to me I'd start to complain. 

Then I'd stop, think, and remember all the times I was REALLY in pain and how I'd been helped then. 

I'd imagine how I could be looking at that moment in various states. Then I'd remember that ever aches and pains are not so bad.

I'd grit my teeth into a smile and think how I should be appreciative that I'm still alive and can participate at all. 

And I wouldn't be able to live life or have a quality of life without all the people who help, love and support me. I'm so fortunate to have family, friends, caretakers, etc. Who have taken time out of their lives to keep me functioning.

There are so many people in so many roles who have come into my life and brought something good to it over my past battles.
I'll be forever grateful and indebted to anyone who has been kind enough to bathe and change me, refreshing my bed while I am so sick and a shower and change of clothes is the only thing that reminds me I'm human. 

I am so lucky to have experienced the love and generosity of so many. The support has helped me survive for so long. I'm fortunate. Without everybody who has lifted me up and carried me (sometimes literally) during the hard times, I would have exhausted myself. 

I'm lucky, a lucky, lucky woman. It's so important to survive and live with a healthy mentality, appreciating the little things. Don't focus on what you've lost. Focus on what you have and what you've overcome. Then remember to be grateful and as happy as possible.

Tuesday, July 26, 2011

The Camping Summary

It's Tuesday. I returned  from camping last Friday.
Maybe that sounds like a while to some of you? I'm still recovering.
Camping is one of those fabulous things I do because somehow I always forget the agony it leaves me in and remember all the smiling, singing, and laughing.
When X is in his best moods, he sings.
While we were camping he sang constantly.
I considered cutting our trip down from two weeks to one, but then right before school ended, X started to ask obsessively about jobs, how to make money, save money, etc.
He wouldn't tell  me why, and suspecting the worst: that he'd become overly anxious due to our finances, I dragged the reason out of him at therapy.
Why the anxiety?
He wanted money to pay for vacations. He heard we might only go camping one week and was going to pay for the second week.
So two weeks of camping in The White Mts. Again. The first week, as per tradition, X and I go up with my mother, Nana, along Lex or C or a playmate, and meet my Grandparents (my mom's parents, the kid's great-grandparents, who still camp 2 weeks in their 70s. G-pa still bikes 12 miles each morning with my mom).
I luck out and do virtually nothing. I'm very babied.
That's how it has been possible for me to continue to due this. Mom just takes over.
After a week the physical difficulty of camping has worn me down: walking to the toilets, from one campsite to another, packing for the beach, playing (if possible).
Of course, this is when J finally gets up to join us.
Then we move out of mom's camper and into our own camper a couple sites away. I have to walk more between sites.
I  then have more responsibilities and less energy, and I'm pushing myself to do everything that J and X want to do.
Then, I get really sick, exhausted sick. The routine is something like this: Sun-Sat: relatively good, active.
Sun. I start to get ill. A week ago Sun. on came the worst possible camping sickness: an upset GI tract.
I'm 1/4 mile away from the closest bathroom, every bathroom I have access to is public, and the entirety of my bowels wants to escape NOW.
It hit at the annual rock show at Conway's Elementary school.
Somethings are just beyond my control and a bowel illness is one. I decided to let it out and run hoping nobody saw who the big stinker was in the public bathroom.
Too bad for the little girl next to me with the mom waiting patiently outside of her door. Mom kept asking her is her stomach was okay and if she needed to come in for help.
The little girl kept denying it (since it was me) but mom didn't believe her.
When mom went into the stall I gracefully slipped out of their unnoticed. I don't like going to the bathroom in public bathrooms, but if my health depends on it, I'll find a way.
I snuck out unnoticed and took some immodium, but it barely plugged me up.
I ended passed out in my parent's camper since it was closer to the bathroom. Moving anywhere having to squeeze those cheeks stuck was a fight, but I fought it. . . by taking getting to the bathroom, taking immodium, and sleeping until Tues.
 I tried to schedule my sleep so I could still do outings with J and X.
C went home for a couple days with ear problems so it was the first time in years just the 3 of us were bonding camping.
I got my game face on and we all did some back to school shopping, mini golfed, and saw Harry Potter on a rainy day.
Our ONE rainy day of the vacation! The weather was fabulous.
Tues. and Weds. I started to feel better.
But I also started to throw up. If nothing came out, I just dry heaved.
I knew this would happen. Even though we have over 30 ft. of bowel it just doesn't seem that fair from one end of the GI Tract to the other.
This was better though. Vomiting is more containable. The severe nausea only lasts 5 min. until I can get some pills into my system to take care of it and keep going on my merry way, hanging out on the beach, etc.
I also got this nasty acid reflux that wouldn't kick itself.
I've upped my prilosec and taken more tums. Hopefully it helps.
I've just now started to wake up and become a somewhat active member of the world.
We came home Fri., and I slept until 2 on Sat. Then got up for a wedding. On Sun. J informed me that he wouldn't be doing all the camping clean-up himself, so I got up to help.
Then I ended up getting hot flashes and throwing up so that ended. I didn't go out that afternoon. Do not pass Go. Do not collect $200.
J and X saw Captain America.
I'm finally coming around. It was mostly worth it.

Thursday, July 21, 2011

EI'm sitting in the car, waiting, bc j,x, and c decided two rounds of mini golf were on schedule for tonight. I could barely keep up for one. I did well. I beat par as long as I sat on the bench between shots. Camping has gone mostly well. We had snaffus as per our usual. A family of mice made their home in our camper, chomping through canvas, windows, the bed, and the tarp we bought to keep up dry the last time this happened. The canvas needs to be replaced desperately. Next year we hope to have the funds thanks to a home refinance. Finally pushed to refinancing our home. I think good things will come from it. For this year, we got another gigantic tarp that covers the entire campsite. I now have the garage I've always wanted, and no water is getting in. X need a larger bike for all the biking he planned to do, and getting him a new one allowed C to have one so they could go out together. I love seeing them making friends and wanting to explore farther safely with Nana and Gpa (my mom and grandfather). Apparently everything that comes back easily is not like "riding a bike." Since I can't do it anymore. I can't feel my feet to stay steady and not fall. Things that come easily are like "doing a lay-up" for me. X,C and I spend the first week camping with my nana and my grandparents. We relax going to the beach, catching frogs, they kayak. We don't leave the park much. The second week j comes and we move to our camper. This year my father came up too but nobody else. It's an odd feeling. We usually have a good group of "Wilders.". When j comes we hit up the local goods, like the outlets at Settlers Green. There were some good deals at NikeN adidas, pacsun. The highlight this year: X finally getting into back to school shopping. It was the only time we'd been on vaaca just the 3 of us. C went home for a couple days to recover from an ear infection, and x reminded me of the year he was given $200 to spend on school clothes. Better days, but we could work out some goods for him. First, a new backpack bc last year he didn't want one, then when he did I said we'd go buy one, then I was too sick to take him to buy one. He never got a new bag, and I heard about it all year, even though his LLBean one has a lifetime warranty. That's not the point though. Just typing it makes me sound archaic and uncool. Then we let him loose on some clothes: a green nike jacket, shorts in sizes too big for fall and winter sports, a pair of sandals for now and soccer and a pair of shoes in the next size up. I was ready to get some more, but j reigned in. We did get some resonable deals. When we walked into Nike X ran up and picked a black climacool shirt with white stripes on the shoulders, the exact same shirt I bought for J the first birthday we were together. It was amazing to see our half grown child picking out things we liked together before him. He tried all the outfits on in all sorts of combinations. I had so much fun watching him model. No sure where the sudden vanity came from. I think it's comes from a bad place...... The discovery of girls.

Wednesday, July 20, 2011

I did it. I finally did. I asked google its opinion on the can kids play with toy gun issue. I have heard so many conflicting opinions. I know mine and I needed confirmation that my "evidence-based parenting" thing I've been applying was also inaccordance with the studies. There, in black and white, from several countries, there appeared study after study saying playing with guns will happen with boys as long as they have two fingers or a stick. The problem lay in if the toys looked real and if the environment supported violence. Just in case you wondered.
I think my body has a one week camping quota before it starts going haywire. After one week, I grin and bear it for the fam, especially x, who thinks only two weeks of camping is a rip off. Its been a quiet year. We usually have. A serious fam reunion, but there's no aunt and uncle, sister, brother, or cousins this year. Our nephew is with us to play with x, but it's turning out that j, x, and C just end up ditching my weak tired self. I'm ready to go home and recuperate, but I'll settle for a shower... Or just the energy to wash my hair.

Monday, July 11, 2011

Why I Survive

I had a moment, sitting on the beach, sun shining on my face, wind blowing through my hair, x and c laughing in the water,j,mom dad, gramps and gigi talking beside me when I thought"Ahhhh, This is why I survived." I felt pure elation. There is no feeling better than extreme relief from having overcome life threatening adversity to find yourself in the perfect place, momentarily knowing you won, you beat that obstacle, and this is why. This is part of the prize. It's been suggested that the theory of "every action has an equal and opposite reaction" can be applied to more than just physics. If it's applied to emotions, the pure devastation and helplessness I've felt in the past can have competing happy moments, and it does. I remember the first time I could take steps independent of oxygen. I'd suffered severe shortness of breath for 6 months. I had a pneumothorax, pneumonias, lung biospies that showed nothing but fibrotic tissue. In Dec. I was finallu diagnosed with bronchiolitis obliterans, a likely fatal complication/ side effect of a non-related allo-genic transplant. At that point I consulted a lung genius with dana farber/ brigham and women's named Dr Weinhouse (who still assists in my care)and he finally talked me into steroids with photopheresis. Starting these at the same time, I can't say which helped most, but the steroids had me taking free steps within a week. I I felt like I was walking on clouds. Nothing better had touched my feet ever before. There are not strong enough words to describe the loss of a body function that you always counted on having, always took for granted. Devastated, floored, terrified, those words don't completely describe the shock and horror of losing your quality of life overnight. There are also no words strong enough to convey the relief of getting better, when you take those first painfree breaths and carefree steps. It's like receiving a blessing, having a wish granted, personally for you. There's no way to explain it. It's the best feeling in the world. I hope others who win even small battles in their fight against diseae get to experience the same feeling.

Saturday, July 9, 2011

How to Create a complementary Health Care Arsenal!

After Five years, I'm finally creating a complementary health care arsenal. I've tried just regular cold process supplements for Hodgkins, a German regimen specifically for me (which regressed my tumor), an Anti-inflammatory and all sorts of other "diets" for health, but I've never found the combination that kept my cancer at bay and provided me with energy for a quality life. I'll take either outcome. I've hears suggestions from protein mixes and health shakes to asparagus and worms. These suggestions are often loss in the roaring tidal waves of medical suggestions and treatment, untouched.

Why has it been so long to create my arsenal and how can you help someone create their own, you may ask?
 First, easy, life is tough. Second, I'm about to let you know.

I've been so overwhelmed and inundated with new chemotherapy, treatments, and issues just from my primary traditional doctors that anything above and beyond could push me over the edge into the health care treatment abyss.

Being so stressed I can't add another single  element to my life without my head threatening to explode from the inside out.

But the well-meaning suggestions and options just keep presenting themselves. I'd love to try them all, but hearing them makes me want to scream. I just can't do everything myself to save my life. 

It's frustrating. I have always wanted to try these assistive techniques, but I can only handle doing them when I'm on a break from treatment, in recovery, or in remission, when I'n relatively healthy anyway.

 So all those wellmeaning, loving suggestions of green tea, a tea called whatever "canadian nurse" backwards is, power shakes, or aspragus make me mostly sad. 

I want to try them, but I can't without my strength, energy. My severe chemo brain makes altering my routines a test of my intelligence equal to physics. I don't think I'm the only patient who feels like this, but how to help is the mystery.

Here's a case where cost isn't stopping me. Time, ability, my disease and disability are the barrier. 

What I would love, in a perfect world, would be that anyone kind enough to give ideas would also come and help prepare it. Help work it into the  routine, make a large batch and freeze it so it can be available for months. Lucky, almost anything can be frozen, including bone marrow soup and asparagus puree. YUM. I can hear the squeals of excitement now.

I've been hearing about asparagus for years. I love aspragus. I bought almost a bushel of organic, local asparagus a couple years ago to try it. 

Buying it alone was a chore. I never pureed it to get 2 tbsp (or tsp.) twice daily. That's prep work. Hard work for the disabled. 

I also never was able to drive out of my way to the health food store or naturopathic pharmacy to pick up "aspargus powder." I didn't even order it over the internet.

Could I do it, yes. Is it likely. . . well, five years after its initial suggestion, I'm kind of getting around to it. The asparagus is unthawed from my freezer and in the food processor. 

This is common with patients. The feelings of being overwhelmed with your disease and traditional treatment is common across the board. 

My disease is a full time job, but that doesn't mean stop giving suggestions to help anyone, but if they don't suddenly appear two times daily with the suggested tea don't assume they don't want to try it either. 

But, please, if you have a well meaning suggestion to "cure" your loved one or better their lives, tell them, gauge their interest, and then offer a day and a time that starting it, cooking it, whatever, can be done together.

This makes it convenient; the proven primary motivator in peoples' actions. Its a twofer, people bond and a new trial is started. 

Then, if you're feeling really motivated explore and consider setting up your own personnal trial. 

I like this idea. It empowers me, making me feel like I haven't suffered in vain. If cancer overwhelms me, I'll know I left the world with more information for the future, especially if I can increase information where no other study will be done.

Thursday, July 7, 2011

Bone Marrow Soup & Ginseng: Al Sorts of Good Things

I stayed up last night. I pulled an all-nighter, my first one in years.
I wasn't being forced to read a ridiculously long book. I didn't have to write a paper due the next day. I wasn't partying into the wee hours of the morning (but I was celebrating with fireworks even).
It was so much better than that.
I FELT GOOD! I felt motivated and capable and I was way too excited to waste that feeling sleeping.
Where'd the change come from?
Maybe it's the chemo holiday helped by my slight increase in prednisone, but I've done those things before.
Maybe it's the remission, but that's happened in the past too.
I've been taking Dr. Wong's chinese tea which now contains ginseng to give me a little extra zing.
I also made my first bone marrow soup, which does, absolutely, increase my energy, using this recipe:
2 or 3 lbs marrow bones- Cut to see the hallows within the bone containing the marrow, you can have the butcher saw them or do it yourself
 medium red pepper
1 medium onion
3 celery stalks
1 tsp dried rosemary
1/2 tsp dried thyme
6-10 black pepper corns
2 bay leaves
Garlic, lots
(I used fresh herbs. It's that thyme of year) 
Cover bones in water
Crack the bones and then throw everything into a crockpot and slow cook overnight.
 (or low for 8 hours)
Cool the soup for a while. Then, strain the soup through a cheesecloth or strainer (you should only be left with the broth) and let it cool to room temperature before placing it in the refrigerator.  After it’s cooled, there will be some fat that is congealed on the top.  Skim this off and throw it away and then fill ice-cube trays with the soup until frozen.  You can store the cubes, two each, in zip lock bags.

This recipe still came out a little watery. IT needs more flavor to stomach it, maybe bouillon, but overall, tastes like chicken soup.
I used the broth for ramen noodles and threw the flavor packet in with the noodles, which made it taste fine, exactly like ramen.

Wish I could tell you more, but I'm off and running again. I'm still busy, but finally with lots of good things!

Tuesday, July 5, 2011

How Hospital's Can Survive NH's Budget Without Hurting Patients

I did a little expirement this weekend. I tried to check whether my eye drops really expired in 28 days to stretch out my kineret dose and pay less. Now, I'm writing this with my left eye shut since it's useless, seeing only cloudy spots and feels like I have a twig in there. 

I guess my doc wasn't lying to pinch extra money from me. 

But recently, health care professional's have been exposed pinching extra money. A recent article in The Valley News exposes Dartmouth Medical Center's spending practices and upcoming projects, such as a $35 million dollar office building that is being funded through "investments."

 Last I knew, non-profits were not able to have investments that made millions of dollars, much more than many successful companies. 

NH's State Budget has passed, but it's clear neither side, the government's nor the hospital's hands are entirely clean. 

What they can both agree on is neither comfortably wealthy groups are willing to make sacrifices themselves to save the poor and sick in desperate need of the hospital's services. However, the hospital has stated outright that the budget cuts will effect patient care by minimizing staff, enacting "project lean" where previously standard treatment, such as an RN giving an asprin for a chest pain in the ER, no longer occurs. They need to save the cost of that asprin. A doctor must order it because that pain could be anxiety or pleurisy.

The problem with this "project lean" is that chest pain could be a heart attack and heart muscle damage may be worsened.  I am sure these decisions were not made lightly; however, our representatives and our hospitals seem to be saying that's the price patients have to pay. Residents may pay with their health so the state can continue functioning financially. It's survival of the fittist, Darwinism in the millennium.

I gave some suggestions regarding legislation that could be passed to assist in this financial health crisis. It's only fair to make recommendations to the hospital. 
1. Disclose those investments! There is something fishy here. How can a company get non-profit status tax breaks but have 35 million lying around? 
2. Cut unnecessary, complementary staff, such as the artist in residence. 
3. All those craft supplies, art, etc. in the hospital budget, cut those too. We need care, not pretty walls 
4. Make some currently free programs a low cost out of pocket expense. Dana farber has the Zakim Center which provides nutrition counseling, accupuncture, massage, for a fee. 
5. Create a 2nd large fundraising event 6 months opposite the prouty.
6. Offer lessons teaching employees how to advocate. Make it convenient for them to assist in making changes. Organize Rallies. Provide buses to go to Concord on voting Days. 
7. Don't only appear to our representatives when you're asking for or fighting something.  Have everybody lobby and advocate for things like cost control measures such as a cap on malpractice suit awards. Start and suggest legislation, then band togeher to fight for it, don't simply react. Flex those powerful numbers!

Saturday, July 2, 2011

On my way. . .

I decided to up my prednisone dose yesterday from 5mg to 7.5mg.

I really wanted to wait until I was reassured al the side effects from my chemotherapy had subsided. Weeks three and four are generally the worst for counts, and thereby, worse for side effects like fatigue, constant sleeping, nausea, lack of an appetite. Really, just slowing everything down.

I haven't been motivated to do anything for a while now.

These symptoms are also the symptoms of Addison's disease, and having been on prednisone so long, being diagnosed with Addison's previously, it's not a far stretch to think that my adrenals probably aren't working at tip top condition.

And I am ready to have some fun.

I haven't been fully honest about the extent of the side effects of my cancer or treatment with anyone. I've recently started to tell a select group, mostly out of necessity, because if they know I'm having these problems they won't ask me to do so much helping.

Most importantly, my average blood pressure is 90/50. For an athlete, this would be a great strong heart. For a cancer patient, this means I don't have enough volume in my blood, created by things such as cells, to maintain a healthy pressure.

Everytime I bend over (which I don't anymore), just bend at the knees and stand, or move from lying to sitting to standing quickly, I experience serious orthostatic hypotension.

Yes, many people have this. They get a little light headed, they see a little black, then they go about their business.
Mine goes beyond that, I see black and stars and feel lightheaded, right before I lose my breath, I get cold and feel like my heads been blown off.

I need to sit down immediately. I do fear sometime I'm going to pass hot in public, at a soccer game, school event or some other place in front of a lot of children.

I'm hoping the medication to boost my bone marrow and the bone marrow soup will assist with this. All tradition medicine had to offer was a peek at medications I'm all ready taking to see if any could be contributing. They aren't, I need more blood volume full of happy healthy cells.
I think I'm on my way to feeling better. :)