I stayed healthy this weekend.... Except that minor problem of strep throat. 

My throat started hurting Thurs. I ignored it assuming it was chemo related mucositis. 

I knew I had been exposed to strep but I don't have tonsils. I hadn't spiked a temp either. 

I ignored the sore throat Friday too, but it was getting harder to ignore. It was burning and hurting to swallow. 

Sat. Morning I got out the flashlight and took a good look at a major white patch situated precisely behind where my tonsils should have been. It looked like strep. It hurt like strep. But it also looked like an ulcer and hurt like an ulcer. 

I threw the linen cabinet pharmacy on fixing that sucker: cepacol, capsacin, mylanta, BLM, warm salt water swishes. Nothing worked. 

Sun. I woke up to the same fire in my throat and decided it was worth "wasting my time" to go se the local Dr. on call.

I saw him just in time to hit up the pharmacy for amoxcillin before it closed.

Now, 36 hours later, the throat is much better.

Just in time to travel 3 hours with my grandparents to Boston to see Dr. R. Dana, eye guru extrodinaire.

Finally, a pharmacy with stressfree automatic refills

It's taken me five years of searching for the world's best care practices to finally find a pharmacy in the United States that can handle automatically refilling my standard medications each month without any notification from me even if the dosage changes.

This pharmacy is in New York City in Chinatown.

My prescribing doctor and the people who run it are Chinese. The place may as well be in China.

China is looking better and better to head to for treatment.

On the flip side, I've taken the same dose of pain control each month for over a year now, but I ran out TODAY, forcing me to ration, since the script was somehow altered.

I don't know if my doc changed it and forgot to tell me, if I was told and forgot, or if the new computer system screwed it all up.

What I know is it's a long holiday weekend. I discovered I was going to run out on Fri. I made an emergency call to my doc asking him to write and mail a written script. Even if he did it and it got in the mail, which I suspect it didn't, I was too late to save anyway.

Luckily a friend of mine works at the hospital who will pick up a written script for me or I'd be withdrawing today.  That's only if whoever is on-call doesn't treat me like a two-bit, drug seeking crack whore from out of town that he's never heard of.

It has happened by a Doctor that had absolutely heard of me. I guess "incurable cancer" is not the excuse it used to be.

But pain management is a sensitive topic so that's a bad example.

My experimental eye drops from Mass. Eye and Ear are gotten in the most similar manner as my Chinese Supplements. The pharmacy mixes it themselves and they only accept payment, no insurance.

The drops expire every 28 days. I must order them every 25 or 26. I use the same credit card every time just like in Chinatown.

The first time I tried to refill they had lost all my credit card information that I asked them to keep on file when I was at my appointment. Ever since then it's been a phone call given them a prescription number.

There is no reason this pharmacy, or Rite Aide where I've been ordering the same medication at the same dosage for years now, can't automatically refill the meds and send them along.

This practice would actually be more lucrative for them. Have you noticed that some subscription magazines no longer just stop coming? Instead they recharge your credit card and one years subscription turns into two or three without you ever really noticing.

That is because convenience is the major driving factor in most people's decisions. Calling to dispute a credit card claim is very inconvenience.

Instead I have to do it their way, online, registering for their service using http://www.riteaid.com/pharmacy/refill_now.jsf  If I did it this way, I'd be getting a phone call every other day since none of my medications ever line up at the same time each month for a refill since they aren't prescribed all at the same time.

Ugh, just another obstacle in obtaining cancer patient bliss. 

Chemoversary

It has been five years since I started treatment. I've reached my 5th chemotherapy anniversary!
I think this is worth celebrating on top of reaching 5 years post diagnosis, starting chemo was a traumatic event in and above the cancer diagnosis.
I was far more scared of the treatment than the disease.
I still am.
It's true what they say, "If the cancer doesn't cure you, the treatment will."
If you hadn't heard that now you have. If you thought it was an urban legend, I'm now confirming it's truth.
My diagnosis of Hodgkin's Lymphoma gave me decent odds of survival and cure, some as high as 90%.
A cancer with a 90% cure rate was not so scary 5 years ago, pouring poison into my blood with all my education about its effects was.
I said loud and clear in my previous life that I would never be an oncology nurse. I would never mix or administer chemo. I wouldn't put myself in the position to give myself cancer.
Yes, chemo can give you cancer.
On top of the fact that exposure to chemo alone can give you cancer, nurses complain of severe headaches, neurological problems, and other ailments of unknown originals that they suspect are from administering chemo.
To give the therapy, they have to put on masks, gloves, and a full body plastic suit to avoid exposure and protect themselves.
Is it any wonder I wasn't excited to hop into that infusion chair?
But I did it, and have kept doing it ever since.
Most of the complaints I have are therapy induced, so many that it's easier to tell you what the cancer causes than list all the problems the treatment has caused.
The cancer causes severe pain and fatigue. If allowed to grow, it will cause organ failure and severely weaken my immune system.
You know what else severely weakens my immune system and causes fatigue, you guessed it, my chemotherapy.
It has also given me asthma then bronchiolitis obliterans to the point I became oxygen dependent, but have since, luckily or miraculously, overcome. Thank you, God.
I have lost 20% or more of my corneas.
I have a neuropathy in both my feet and my hands, meaning I can't feel  much, but luckily, I haven't experienced any pain.
I have constant nausea. That's if I'm not throwing up. I think nothing of vomiting after a meal. If a don't make it to the bathroom, oh well. A bucket or outside does just fine. I bring new meaning to "puke and rally."
I've weighed as little as 90lbs. Then I ballooned to 150 with most of that being placed directly in my face. If you thought having those brownies going to your hips or thighs were bad, imagine them being plastered across your face or in a lump on your back. Just call me QuasiHillary, The Hunchback of Cancerville.
I've lost all my hair only to have it all grow back in places my father can't even grow it.
I haven't even mentioned the menopause, hot flashes, cold sweats, mood swings, confusion, "chemobrain, "etc. etc. etc., because the list goes on and on and on.
 Surviving all those awful things and overcoming them to the point of functioning I'm at today is absolutely worth celebrating.
I confident I'm still here because I have yet to fulfill my "purpose" or my life's destiny. After all this time, I still have goals that I'd like to achieve.
I want to write/publish a book. If it would make The New York Times' Best Seller List or win a Pulitzer I could check that childhood dream off my list.
I'd still like a "Hillary's House" near DHMC for patient housing. Thank you Andy for helping with this, unfortunately The Upper Valley Hostel hasn't been receptive to our offer to assist it in fundraising. In fact, they've been downright rude. That's why The Relay For Life has gotten my support recently. One loss is another's gains.
Even living close I'm no exempt from needing closer housing. If my doctor will not administer my therapy June 6th as an inpatient we'll likely be spending the night across the street at the Marriott. Nobody wants to rush with me gasping for breath, having to be carried to the car, throwing my bags together AGAIN. I'd rather be admitted, but if not we're staying close.
I want to find the cause of the cancer cluster in my area. I want to gather the information needed to prove the existence of a cluster so I don't have to hear about my neighbor's suffering and dying from blood cancers, brain tumors, and rare cancers anymore.
I want to watch Xander grow up and help him turn into the man I know he can be. I want to be able to keep coaching or supporting J coaching so we can positively effect all the kids we can.
Finally, I want to help assure that no one suffers the way my family and I have.
I hope that God's plan for me aligns with my goals.
This is the reason I've lived so long with so many problems stacked against me. I still have life goals, none of which include buying next years hottest outfit from Versace (a garage would be nice though ;) ). 

Powerlessness Food Fight

I have very few choices I can make on my own at this point in my life. The ones I still can, I cherish and enjoy the little control I have. It keeps me from feeling powerless, that my hands are tied, and most important, it keeps me active in my care and health.
Saying that, I'm going to hold off on the bone marrow eating until I clear it with my Doctors.
Yes, Doctors, plural.
I spoke with my NP, Melissa, from Dana Farber yesterday. I have an appointment with Dr. Alyea on June 13th.
It's been almost a year since I've seen them!
My choices are limited when making decisions regarding my care, but I need to feel empowered. It's important for me to know I still have control in some areas. Seeking opinions, getting educated, and making decisions based on all the knowledge I acquire makes me feel empowered. Knowledge is power. I'm going to think my way into kicking cancer's ass!
I can also choose what I eat, and hope I'm making the right choices not to "feed" my cancer.
At one point, I wasn't allowed to eat meat unless it was char broiled, as well done as it could get and still be edible.
Now, after years of omitting meat from my diet, I should probably ease carefully into eating meat products again.
One theory behind my strict diet was/is that removing certain things from my diet, such as meat, my body will no longer make the enzymes needed to break down meat. My body can then rest allowing it to detoxify. I also would not detract from my natural responses.
Well, I've tried this for years with no success, I want my meat back! I've had steaks a couple times in the past couple weeks and I'm loving it! I don't know how I went so long.
I'm still trying to omit sugar to the best of my ability.
I'm taking Dr.Wong's magic herbal tea twice daily. I've fit it into my routine, taking it with my am meds/ breakfast and dinner.
It's easiest to be compliant with a practice you dislike if you make it convenient, and the easiest way to do this is to add it into your routine so it feels like second nature.
I think I may take Airborne, which is really just an immune boosting supplement at lunch every other day.
I hate the effervescent formula and having to drink it in an 8 oz. glass of something so much I won't do it.
What I will do is chew the pill even if I have to break it up piece by piece then drink 8 oz. of something.
It's all going to the same place right?
See, I have power! I have choices! You do to. Some foods out there to prevent cancer that you can enjoy to: Green Tea, Kale, OJ, Broccoli, Pomegranite Juice, Turnip Greens, Cabbage, Spinach, Tumeric, Brussel Sprouts, Ginger, Salmon, Dark Chocolate, Shrimp, and Garlic.
Eat up your heart out!

Project Lean

My mother will be calling my Doctor soon to voice her opinion regarding my upcoming chemotherapy plan.
I spoke with Dr. G the other day and listened to his ideas regarding my next Bendamustine dose.
He wants to aggressively pre-medicate me like patients are for Taxol, decadron 8 hrs. before, 4 hrs. before, and immediately before infusion. Also immediately before infusion, IV fluids, tylenol, and benadryl for what we now suspect is a severe allergic reaction to the drug that makes me appear septic: raging fevers, racing heart, and rock bottom blood pressures that place me on the brink of coding. After the infusion, I'll continue to take decadron for the next couple days and benadryl around the clock.
If this doesn't fend off my reaction, I will no longer be able to use the therapy.
As much as I don't like pumping myself full of steroids, we agree on the regimen.
We agree, except he thinks this can occur as an outpatient. I'll take my own decadron leading up to the infusion. I'll go to the clinic as usual. I'll leave as usual. I'll take the post-infusion medications. His explanation is I will be getting the same treatment I would as an in-patient.
Being the person who wakes up feverish with cold sweats and chills, unable to breathe, unable to walk, or even stop throwing up for the 30-40 min. trip to get back to the hospital, I'm not a fan of this idea, but once to the hospital, I lose consciousness.
My parents, being the people who rush me to the hospital fearing for my life and stay by my side advocating for the very best treatment, do not agree with doing this as an outpatient at all.
Losing consciousness is not what I imagined it would be.
I thought being "unconscious" meant comatose, peacefully sleeping complete unaware of the world like in the movies.
The "completely unaware of the world" part is correct. Everything else was wrong. I'm up. I'm talking, but not always coherently. I'm coherent enough to answer direct questions and follow directions, but I am not "conscious." I'm not aware.
I've gone to my safe place. I feel no pain. I have no fear. I won't remember anything. I'll regain consciousness periodically, but I won't be able to tell you the time, day, month or hospital I'm in for the next two days.
By any medical definition, I'm severely disoriented, but staff, mostly the Doctors, still have me guiding treatment when I can't even tell them the season.
My condition leaves my parents to care for me and remember all the terrible,  inadequate treatment I receive.
I've been telling you the truth regarding my admissions recently, but I haven't been telling you the whole truth.
My opinion as an educated patient and former ICU/ER RN, if you or a loved one is hospitalized, do not ever leave them alone to fend for themselves unless you know the staff personally or they have proven themselves competent over a period of time.
Over the past five years, my mom has become a professional medical advocate and my dad (who ever would have guessed this?) can diagnose me and suggest basic treatment accurately before I get to the car to race to the hospital.
They are educated loved ones.
Yesterday they informed me that despite their best efforts, I was not administered antibiotics for over 4 hours less than 6 hours after chemotherapy with a temperature over 101.5. This is the basic standard of treatment.
This means it is the very least that needs to be done to care for me.
The first year resident, the absolute peon of the hospital who also happens to be a future hematologist that had treated me before, over-rode his attending to give me the anti-biotics.
He could not over-ride him to administer my daily narcotics, forcing me to miss my nightly long acting morphine dose when I was all ready in pain.
I  woke up in so much pain I asked to be made a "do not resuscitate" thinking this would make staff more comfortable with administering the doses I needed. I was comfortable with dying to stop the pain.
Thankfully, my parents were not and made sure I received what I needed or I would not be warning you today.
That ER Doctor is fortunate I don't have any memory of him, because if I did, I don't care if I had to jump out of my wheelchair with my oxygen tank attached to my bank, I'd get up and kick him in the kahoonas for making me suffer the way I did.
I wish I could say this event was isolated. It isn't.
Three weeks ago when I ran to the ER under the same circumstances I waited over four hours to receive IV fluids with a blood pressure as low as 50/30.
This is down right negligence. This is an atrocity that could have absolutely killed me.
A normal, healthy blood pressure is 120/80. In an athlete, the blood pressure could run lower.
A blood pressure of 50/30 is never, under any circumstances, safe. There is not enough blood being sent with enough force through the body to maintain life. At this pressure blood is likely being shunted to vital organs: the brain, liver, kidneys, etc.
It's no wonder I was not fully conscious.
To remedy a low pressure, patients are giving "runs" of normal saline (IV fluids) to help increase volume within the blood in hopes the heart will push the added volume harder increasing pressures. If this is not successful, medications called "pressors:" dopamine, dobutamine, neosynephrine, levophed, which cause severe vasoconstriction to the point patients can lose limbs if not administered properly due to lack of circulation are used to raise blood pressures.
I waited 4 hours to just to receive IV fluids, only then to have two liters flow in simultaneously to catch up for lost time. I received 6 liters total, raising my pressure to 75/40.
When the double bags of fluids started I knew I was in trouble. When I was told the nurse would be getting a urine sample using a straight catheter (a catheter like a straw that goes in but gets taken out immediately) I asked for an indwelling catheter (one that stays) so I wouldn't have to get up to pee every 15 min. and risk falling. I'm a wobbley sick person.
I was told "No, that would be an infection risk."
I was confused. Putting that straight catheter in would put me at the same infection risk as an indwelling, but keeping the catheter would actually provide benefits.
I was still denied.
At one point, almost every person who came into an emergency department that required an IV was immediately given IV hydration. A person with a blood pressue of 50/30 would certainly not wait hours for them.
No person who was being straight cathed with two bags of IV flowing would be denied an indwelling catheter.
I'm scared for my life. My family is horrified and getting angry.
We suspect there is a cause beyond blatant negligence.
Recently hospitals have undertaken what is called "Project Lean," this is defined as "A hospital based quality improvement initiative." This initiative is to treat patients as efficiently and effectively as possible using as little intervention as possible.
In Emergency Rooms for example, nurses have been told not to administer any intervention until a Doctor has assessed and officially ordered an intervention.
I understand this is how textbooks tell the world ER's operate, but in reality there may be one Doctor to 6  RNs with 3 seriously ill, even actively dying patients.
That one doctor can't be in 3 places at once. Privacy issues state the three patients can't be in the same area together.
Should the Doctor pick which one gets treatment or should well trained experienced RNs provide care based on ACLS (Advanced Care Standards?).
The answer has always been save the patient. Get the patient the best care as quickly as possible.
Dr.'s are now being told to see all patients before being given treatment, meaning it could be hours before a seriously ill patient, like myself, is seen and cared for.
However, this is not how they are used to functioning. They haven't changed their practices yet.
And this is all happening to control costs. I predicted this would happen years ago. A bankrupt health care system can not provide adequate care. People die. I don't want that person to be me.

Slowly coming around

I hate to use words like "exhaustion" and "comatose," but those words would be accurate describing these past couple days. My body has sent me a clear message that I overextended myself last week. I am now fighting off something that includes severe aches and pains with a cough.

My teeth even hurt on Sunday. Cancer makes boy parts you never imagined hurting more painful than you have ever experienced with no rhyme or reason for when the pain attacks.

I knew something wasn't right Sunday night. I couldn't put my finger on it. Sunday I fell asleep normally. I got X off to school Mon. morning and fell asleep quickly when I got home. I was only able to sleep until 1pm and was off to pick X up for 2:40.

When I got to the school my stomach started twisting in knots. I was in excruciating pain and knew if I didn't get home to the bathroom immediately the bathroom would be my pants.

I got X in the car, rushed home, did my business, made sure he had eaten his afternoon meal and was playing happily before I laid on the couch and passed out, unconscious.

I couldn't function for X's baseball game. I couldn't wake up to care for him in the morning. I didn't wake up until I forced myself about 9 am yesterday and I didn't get out of bed until noon.

Even with all this rest, my lungs are heavy and wheezy, every breath is an effort and my pain extends to places unimaginable to regular folk, like my mid-back every time I breath, cough, laugh, sneeze, sing, etc. etc. Those events require narcotic pain control. The pain has moved to my mouth by threatening to allow ulcers to pop up everywhere then on to my teeth where "sensitivity" extends to every waking moment.

Last night, I crawled into bed at 7 and fell asleep by 7:30. I'll catch Glee's finale on Hulu.

At least the weather is nice.

In preparation for my upcoming chemotherapy June 6th I'm trying to incorporate the chinese herbal tea created especially for me into my routine twice a day.

This is how I've coped with all the requirements of maintaining my health, I make taking my medications part of my routine. If I didn't I'd never have time to do it. It takes at least 20 minutes each morning just to take my pills. This doesn't count prepping my body to ease the nausea so I don't throw them all back up again. I surround myself with a glass of water, a glass of juice (V8 Tropical Splash usually) and some sort of toast or bagel. I take my ativan (to keep myself from throwing up) as soon as I feel nauseas, usually as soon as I get out of bed. Then I get my medications into me. Now, I'll drink my herbal tea along with the rest of everything.

The nasty taste and my constant nausea along with hospitalizations have not allowed me to take complete advantage of the herbal benefits yet, but I did not drop $500 to not use the treatment.

I am eating steaks again, which I love. It was suggested I don't mess around, go full throttle and just suck out the bone marrow of animals. I have no idea how to cook or prepare bone marrow. I do know where to get it. I just need the time, energy, and strength to do it. Maybe J will look into it for me. He's very good with searching for my weird requests.

I'm hoping this will bring me out of this illness without any further issues. We've planned as a family to do nothing but stay at home and work on our house.

Yes, we're a family that needs to plan to stay home for the weekend. I'm hoping for lots more relaxing weekends. Pirates is playing in BF, the cheapest local cinema where tickets can go for $3 on Tuesdays and popcorn with drinks and snacks are affordable. It costs $25 for four of us instead of $50-60 at a matinee. I'll drop that to see Johnny Depp.

Then we're hopefully cleaning the patio and putting up some trellis. I'm continuing my serious home cleaning/ de-cluttering and loving it.

I'm not feeling like this is my best post. It's just an update. I'll be coming around as my body comes around, hopefully soon.

Rip Van Hillary Sleep

My lungs hate this time of year: allergy season.


They have ever since I was officially diagnosed with asthma after starting chemotherapy. 
My horrible lung function is absolutely a side effect of treatment, not of cancer. 
I had weak lungs to begin with. I was very sensitive to smoke, acquiring  pneumonias and bronchitis starting in first grade,  far earlier and easier than I ever should have. 


The therapy exploited this weakness and turned it into a full fledged serious asthma that acts up starting in my and lasting into July, or anytime when pollen combines with humidity. During this time I NEED my albuterol, but I haven't found a good long acting inhaler or therapy. I've been through most: advair, singulair, etc.


Talking to Dr. G today, we may try the non-steroid inhaler that starts with an  "S." I forget the name. I asked about it after seeing a commercial, because I want away from steroids.


I have tapered my prednisone to 7.5mg! That is the lowest I've been since starting steroids in Dec. 2009. Dr. Wong stated I "don't have a chance" if I continue to have steroids as a crutch. 


I agree. I've always agreed, but they've kept me alive and going since Dec. 2009. I think I accidentally did not take my 5mg of prednisone yessterday morning.


I was tired to begin with. I had a LONG exciting weekend with fabulous friends. If the end had come, I would have been perfectly happy being with my companions, but it was exhausting. 

I'm waking up from my rip van winkle sleep a full 24 hours later. 

I woke up for yesterday periodically for some meals, or food, and my medications. 

I was so quesi-comatose I missed X's baseball game last night, and this morning, I could not wake up and move to feed, dress, and get him to school. 

I made an emergency call to my parents and they came to the rescue (again) getting X ready and off to learn. I did not here anyone enter my house. I didn't hear him eat or leave. I woke up at 9 am and refused to allow myself to sleep more. 

I sat up, turned on Nancy Grace, took my medications making especially sure my prednisone was there, and made myself coffee. I even showered. 

Then I started on housework, which I'm feeling a little guilty that Jon has completely taken over. I put away the wash after he washed and folded it. 

This weekend we've planned to stay home with NO PLANS. We need to schedule in staying at home weekends. We're cleaning, organizing, and purging our home. I'm excited, but if anyone wants to recommend we get "HGTV'd" I'd love that even more. 

We're working on making the basement friendly enough so I can at least go into it. I hadn't been to the basement in years because it would send me into respiratory distress. I still live in fear of it, but we're now clearing a lot of things out then cleaning the area.

Please ask, hope, pray that I stay awake and keep breathing to do the family things I hope to do to enjoy the weekend. I'll let you know the plans for therapy coming up.

SUCCESS!

Success! I'm claiming success for The White Tiger's Relay For Life Team's very first Yard Sale, Craft Fair, and Volleyball Tournament.

Beautiful quilts made by my mother-in-law, Becky Ford:
table runners, place sets, lap blankets

I watched the weather closely last week. What the weather showed was rain, rain, rain, Sunday- sunny, 10% chance of rain, 73 degrees (what I say is the perfect temperature), then rain, rain, rain. We've been having record rains. VT has flooded to a state of emergency. On Sat., the day I'd hoped to do the event, it poured on and off with thunderstorms. X's baseball game had to be canceled. Sat. would have made a very bad day for the event. But Sunday, the weatherman was right, what we had, a cloudy but beautiful day.

Even with the short notice and minimal advertising we had five teams play, people lining up for the yardsale before we unloaded or making several rounds of buying and raised over $700+. The final tally isn't in, but that $ number reimbursed all our costs and bought pizza for lunch for the event.

Handmade Bottle Cap Earrings by Jill & Brit for $10
you can't go wrong. Check out their website:
http://jillandbritsbottlecapearrings.webs.com/

The success of yesterday means this is the only fundraiser we will have to do for our Relay Team, but we'll discuss doing more. I don't want to have another week like the last one where I felt overwhelmed planning for my friend's birthday, getting my jewelry together, and an event. I tend to overcommit myself. It's a result of my anxiety, my constant feeling that I have to accomplish everything I ever wanted RIGHT NOW.

I'm working on finding my "inner silence." There is a great portion of "The Anti-Cancer"

Everything went great. I had such a fun weekend.

My BFs from College, Colette and Laurette, came up early Sat. morning (2:30am) with Colette's son Arty. Sat. we had a "pottery party" at a new studio that Shelley Saylor opened in Charlestown. She just opened. We were her first party, but she has earned our repeat business. My NY friends want to come back in two weeks to finish their work.  Xander is asking when we'll be going.

We had so much fun learning how to make "cylinders" by rolling out slabs and decorating them with objects and stamps. Killy, the birthday girl, made a bud vase, Vincent, her husband, made coasters, Laurette made a mug, Colette made a kitchen utensil holder and a hand print memory plate with Arty, and I made a small platter, some beads, and the beginning of a clock.

Our Bake Sale featuring some fabulous chocolate lollipops
created by Cakes By Sara of Charlestown.

The best part, Shelley's very polite young men offered to watch two year old Arty! It was so relaxing.

Getting ready for the next day was daunting, but I barely had to communicate with Michelle and MegAnne I had such confidence they had taken on and covered their portions. It was amazing, and everything did fall together.

Jon was a big help running around doing errands, packing the car and organizing the tournament. Lexi came over that evening to see my friends and help with the organization so both the kids (our relay team's captains) were helpful, but I was so happy the day of the event I wanted to cry.

Playing to cure cancer, what could be better on a
cloudy Sunday?

My father-in-law made it to the park on time, ready to move. Unfortunately he was the only one. Next year the Volleyball Tournament is absolutely NOT starting at 9am, and we'll post signs directing to the event the day before.

I made it about 8:20. He was a great help unloading everything and setting up the tables. Jon showed up with Lex and X not too much later. Lex started organizing the goods on tables like a pro while X helped Jon measure out and set-up the field.

Then the cars just started coming and didn't stop! People driving in with their donations to the sale. People ready to shop that were so exciting watching the new loads of cars coming in. IT was so busy that since the court wasn't ready I recruited some friends to help organize and move things. The money was still rolling is as we were picking up in the afternoon! It was amazing.

Our t-shirt options from The Ink Factory
on Pleasant St. in Claremont, NH or
http://www.inkfactorynh.com/

Gabe's team, which Jon happened to be on, won the tournament claiming the champion shirts. The Ink Factory on Pleasant St. in Claremont did a great job designing and creating them. They even donated the printing fee for us! We love The Ink Factory and go to them at least once a year to create basketball uniforms. They're quick, efficient with fair pricing and a very talented graphic designer. You just have to bring in images or image ideas and they can be recruited. We'll be headed back for our team shirts for the Relay.

A friend donated a beautiful Simon Pierce glass paperweight that is going to become our trophy. I just have to work on getting a base.

 Having money roll in and making cash to cure cancer was great, but the best part was looking around and realizing most these fabulous people had shown up to support me. They knew this was important, it was something I had been wanting to do for years but could never accomplish, and they made it happen! I am so lucky to have the people surrounding me I do. Again, I'm a lucky woman.

Helping is Hot!

JOIN FALL MT. SPECIAL OLYMPICS FOR THEIR 2ND ANNUAL HAWAIIAN DANCE

TONIGHT, MAY 21ST, 2011

6-8PM AT CHARLESTOWN MIDDLE SCHOOL

$5 PER PERSON OR $20 FOR A FAMILY OF 4 OR MORE

** MAKE THIS WEEKEND A FUN SUMMER KICK-OFF FOR THE FAMILY, AND REMEMBER,

 HELPING IS HOT!**

Stressed? Me, Stressed?

I couldn't describe me better.

It's hard to be in a bad mood when you're child starts screaming, "It's the best day eva!" before his eyes even open.


Xander beats cancer stress for me again.


It's a little known fact, ativan, the anti-anxiety drug, doesn't work if you are all ready anxious when you take it. That was the reason I've had 3 times my normal dose and still can't relax the day before.


I've tapered my prednisone, so med induced anxiety was not my problem. 


An even lesser known fact is I am one cheap date when it comes to other benzodiazepines, like Xanax. If I were to switch to quell my anxiety, I may as well say "sianara, see you tomorrow... Or in two or three days." 


Who knows when I'd wake up with my problems waiting.


Along with the anxiety over life (adding the Relay Fundraiser this Sunday hasn't helped. I had to consciously tell myself I can't stress or I will get sick), I was just irritated, angry and exhausted. 


There was real rhyme, no reason. I was just pissed. I consciously had to be extra nice when talking to people, knowing I could blow up any second.


I hate having my emotions control me, but it happens. My computer got the nasty virus this week, someone is using my identity, my twin and I fought, I've had to organize a 100 things (the relay, a party, and my jewelry), and the air is making my lungs act up.


Thank goodness for Xander and his excitement over his "kids and Cops" field trip to the Police Department, sleep over with Carter, and events for the weekend. He reminds me why life is beautiful.


I don't like ever losing the feeling I had when my breath first returned, when I could first take 10 steps breathing independently.


I felt elated and free. There aren't words in this world to describe the feelings of relief, gratitude, humility, and thankfulness to God for returning something we all take for granted, my ability to breathe.


I would walk just to move. 


I am fortunate. I am lucky. I'm lucky to be loved. I know that God shines down on us. I have evidence now.

Can we all see the evidence?

The stress is still here. I committed to too much with the Relay, but this is something I've dreamed of doing for years, and really, I've had great help.


Thank you, everybody, who has helped, is helping, and will come early tomorrow (8 am, please?) to make this event happen, especially Michelle (the right hand woman who is really in charge), Meganne, Deb, and Nicole, whose help kept me sane.


The event yard sale, bake sale, craft fair and Volleyball tournament will start @ 9 am at Patch Park in Charlestown!


I'm getting excited. I'll be selling my jewelry there. We have great shirts for the champions, and enough teams to actually have a tournament (5 or 6).


 If you want to play, it's fun & low key, with kids under 10 allowed as wondering "alternates" on the court, come before 9am. We'll fit you in the schedule.

Celebrating Successes

Andy is celebrating a year post transplant the first weekend in June. That's one week after Dani celebrates the two year anniversary of her successful pancreatic transplant. Killy is celebrating her 30th birthday this weekend, 3 months after another high school best friend, Andrea, saw the big 3-0 AND Killy is pregnant! I'm genuinely happy for their successful lives and return to health. Andy is back to school full time. Dani has a job working part time, perfect "mom hours." Other friends have advanced degrees with flourishing careers or are building brand new homes. Yes, I'm happy for them, but I won't lie and pretend I'm not jealous. This isn't a feeling I knew until I became unhealthy. in situations where a couple is trying to get pregnant and having difficulty, others often feel awkward announcing their own pregnancy success, or in cases where a successful pregnancy is lost, it's often hidden from couples who are actively pregnant, but what happens with young chronic cancer sufferers? I know people frequently hide the deaths of my friends or acquintances from cancer until well after the services are performed. I can understand this. Obviously, I'm going to notice their missing sometime. I don't know what else is being hidden from me "for my own good." I hope it's nothing. Just because I may suffer a twinge of jealousy does not mean I'd not want to celebrate. These events are fabulous. They're what makes life wonderful. They're also what gives me hope. Maybe, someday, I'll be among the people celebrating. Actually, I am. This Sunday, May 22 @ Patch Park in Chas. I'm celebrating my cancer free PET scan the best way, by giving back!! Come early, before 9am, if you want to donate to the yard sale or join our fun volleyball tournament. It's on if you think you can take on The StPierre-Ford White Tiger Team. If I've been taught anything, it's to live and be happy in the now. I'm glad to know that I can genuinely love and be happy for my friends while harboring personnal resentments and jealousy. Maybe it's because though the feelings are directed at their life successes, my feelings have nothing to do with them. I'm jealous of everybody who has been diagnosed and regained their health, found a cure, or gets to live a "normal" life, even if it's just for a 6 months of feeling well. I'd love an entire week. I'm excited I had a long weekend in NY where I felt fabulous but its hard having a taste of health to return to illness. As per usual, I'm going to keep working to get my body in its best condition: tapering my pred., taking the herbs to boost my immune system, exercising, taking chemo indefinately, and praying for the cure for cancer, everybody's cancer.

Life Happens, even to cancer patients

I'd like to stay in my own cancer bubble where all the worlds problems cease to exist and I can cope solely with fighting my diasease. But life goes on the same. Money problems are still problems. The kid still gets sick and needs to be clothed. The car needs to be fixed or.... Your inepentrable MAC computer tricks you into downloading a virus called MACsecurity that sends pop ups of gay and violent porn then pops up that you'll pay the $70 to protect yourself against it. Not a hypothetical. Really happened. Life happens. If you've missed me, now you know why. Don't be tricked the way I was. For MS users, the virus is MS removal tool, Antivirus 2011, or System Tool 2011. An official looking pop-up will show on your screen that you need to clean your computer or scan for viruses, when you do it will show viruses based on your recent downloads. It will then ask for permission to run, requiring your computer password. That's how it tricks you into downloading the virus. In some cases, it will immediately ask for a credit card number to clear the virus. Ours wants $70 to go away. Nasty bugger. To save yourself, have good updated anti-virus software. Microsoft security essentials is free. Malware Bytes run in full scan mode may remove the infection, but the newest variation may require a professional. As for MACs, I'll let you know how it goes. Please send this information along before it get anyone else. If it got me it will get them too.

Vic's Update

Hi All
A lot has happened since my last update. Sorry to leave everyone Hanging so long. i have started this letter several times but had to throw it away as things changed. As always I will start with the great news.

Hillary had a PET scan a couple weeks ago and the results are:::: No visible cancer on the scan. In most cases Dr G would tell her that she is in REMISSION. They do not dare to make that statement. We have been told that at least 10 times over the last five years. The Hodgkins lymphoma is a blood cancer and has just moved around her body and started again somewhere else. Lets Hope this time it will hold!!

More good news is that the chemo reduce the node near the kidney so quickly that it does not appear to have done any permanent damage. Because the chemo has worked so well, last monday Hillary only needed a 60% dose. This type of chemo has put Hillary in the Hospital for a week the last 2 times she has had it in March and April.

The 3 of the 4 weeks between Chemo treatment have been more like a normal life. She made a trip to NY, went up the empire state building with the help of A good friend of Nancy's. We saved about 2 hours of waiting time. Then we saw the Yankees play. Just a beautiful day that we never thought Hillary would ever see. She even visited with some of her friends from college. We did a lot things in NY. She was just amazing. She decided she was not going to use a wheelchair at all. She was determined!! She proved she could do it.

So last monday she had her proactive chemo. By monday evening we were on our way back to the Er at Dartmouth. Fever of 102+. The blood tests. Heart rate racing to150, Needed oxygen to breathe. Blood Pressure 50/30. She was in trouble again. She still had the Kidney stent in and the infection was pointing toward that.  She had blood in her urine since the March Chemo when they put it in. She never told me that. Because of her 2 bone marrow transplants she is very difficult to match for a transfusion. The more transfusions the tougher to match. I don't want to get into everything that went wrong but this week in the hospital was not pleasant. By friday Hillary was able to get the Stint out of her kidney. Saturday she was out and going to Xanders Baseball game. Xander went 3 for 3 with some good plays in the field. Lets just forget what happened during the week and focus on the fun stuff. We can tell when she is feeling better as she starts making jewelry again. She is into so many activities i can't keep up. Next week she is doing a volley ball fundraiser for relay for life. 

So we are up and just a short while later we are down. Next chemo is in June and we are trying to have her stay overnight!! 3 for 3 in chemo- er stays is a good batting average. The roller coaster is the only way to describe what is going on. We have so much to look forward too. We can't believe she has come all the way back. We don't dare to be excited because of how quick things change. We would love to celebrate her success but will just enjoy her. enjoy the Lilacs and blossoms that come with the spring. Life is starting again this spring. everything is green and growing, blossoming and blooming.  This is what we have been praying for. She will continue to surprise us. Thank God she can keep surprising us and showing us how to live each day to the fullest.

Thanks for all your support.

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

Third time, not a charm

Taking my chemotherapy, getting a raging infection, going septic within 8 hours, losing my grasp on reality, walking a fine line between life and death, then recovering in the hospital for a week has become part of my monthly routine since my first dose of bendamustine in March. 

Last week's episode occured just like the first two. I took my chemo dose, went home, fell asleep and awoke vomiting with a temperature. The difference was now I'm getting far too comfortable with this routine. I didn't fight losing myself and my sense of reality, going to the la-la land where I babble incoherently, but am painfree, this time. 

I fell into my spell as soon as I crawled onto the ER Gurney. I came to cognition after I'd been admitted to see three RNs fighting over me going to the ICU or Special Care Unit with a BP of 70/50. 

I say I "came to" in relative terms. I stayed in La la land for days this time, unable to tell the day or time but aware of my inability and the dire straights of my health.

I'd type only to realize I couldn't make sense of what I'd written or remember what I wanted to say. I didn't even try to answer the three orientation questions correctly. Getting up to shower on tues or weds took three people to assist me. 

Regaining consciousness was a gradual process where often I thought I was healthy, strong, or understanding but still fell asleep midsentence or misunderstood conversations. 

I hallucinated until weds, but knew enough to hide it. 

Even on Thurs when my cousin Steph came to visit, I thought I'd prepared my body to enjoy her company only to fall asleep as soon as she arrived.

Friday, after a week of antibiotics (zosyn) and satisfactorily protected from a possible attack, I finally got that pesky stent out of my kidney.

I no longer have any foreign objects inserted into my body minus my mediport. I'm also no longer constantly peeing blood like I have been for the past couple months, since the stent was inserted.

I was discharged Sat. in time to see X's baseball game, and again, immediately resumed our routine of having Carter spend the night and seeing a movie on our rainy Sunday. I'm feeling "good," again in relative terms.

I opened my mail to see my next infusion is scheduled for 9:30 am, I assume so I can be infused as an outpatient in the clinic and be observed until it's closing.

I'm not sure I'm even comfortable with this plan. Next time I'd like to work out spending the night being watched in the hospital with possibly some pre-medication with decadron, tylenol and/or benadryl.

 The third time was not charming and I'm not going for a fourth.

Waiting For a Miracle

When I was first diagnosed with cancer, I knew I would suffer horribly before I was cured. I knew this because I felt my cancer was part of my purpose, part of the divine master plan of the universe, to help restore faith to humanity by me exhausting all human avenues to cure my cancer so God could work a miracle in curing me. This would restore faith to some and all the suffering would be worth while. 

Heaven and Earth, painted by an 8 year old savant who
is inspired by visits to heaven.

Five years later, I've exhausted all common treatment regimens. I moved on to educated experimentation in conjunction with my doctor hoping to turn my cancer into a manageable chronic disease. I've also started with the best of complementary therapy I can find in the world to maintain my ability to fight.

And Finally, at the beginning of my newest chemo regimen, Bendamustine, I went to a healing mass. 

I had always wanted to attend one. I envisioned huge pomp and circumstance. I was met with a quiet ceremony by a humble healer who only laid his hands on me for a moment. 

Now, after three doses of this regimen, my PET scan shows enlarged lymph nodes, but they don't appear to be cancerous; however, the word remission is far from our lips.

 My disease pattern tells us that my cancer will return again and again. I still have hope and faith though that maybe my time for suffering is over and all the prayers from everyone will be answered with a miracle.

Please keep those prayers coming.