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."

Get a playlist! Standalone player Get Ringtones

Sunday, August 30, 2009

An Adult Weekend

***Disclaimer: I have been a little more active than normal this weekend. I wanted to maintain my loyalty to you all and not completely skip out. Here is my unedited posting sans pictures. I hope to perfect it tomorrow, but what can I say? I do the best I can.

I was also pretty chatty on this one.****

I had a very eventful, responsible, adult weekend over the past two days.

I’m so proud of myself, I’m going to tell you al about it.

Yesterday’s posting was inspired in part by the fact that I have had the worst back pain I have ever experienced starting Friday.

I want you all to think of pain in terms of me, who has had the entirety of her skin peel off and bowels slough out. My back pain is probably off most people’s tolerable scale.

I, on the other hand, had things to accomplish, like playing with X since I promised him after his first week of school Friday’s plans would belong to him.

I took 60mg of morphone just to bring the pain down to a 2-3 on a scale of ten and have the ability to take a deep breath.

Not a maximum capacity deep breath, but a relatively deep one.

Pain of this variety that impairs deep breathing is especially dangerous for me sin, without deep breathing. Bacteria and musuc could stagnate in my lungs causing pneumonia.

Pnuemonia is high on the list of things that could kill me.

Getting rid of the pain was a very necessary thing, I just had no idea it would take so much coaxing.

I did manage to my chiropractor, Dr. Klema, who also specializes in acupressure.

I love him, and he was able to tell me the site of my pain was where the adrenals were innervated along the spine.

In plain speak, my back pain was probably being exacerbated by a problem in my adrenal glands.

I did just drop a huge dose of prednisone and even before the pain had emailed my doctor asking him if I should stop the prednisone completely.

I didn’t get an answer back on that.

I’m back with my new/old provider partners, and now I have to collaborate the best method of communication so we are all happy again.

I could call with a question about something that is important and making me miserable every other day.

Communication is imperative and every Doctor is different.

I’m still feeling out the territory. A lot has happened over the past year and a half.

After Dr. Klema worked his magic fingers on my spine I picked up X, and what does he want to do?


Of course.

I did manage to play 4 rounds of tag before collapsing, but of course, this brought the pain back. I took another 60mg of morphine so I could keep playing.

Then I felt well enough to play like I would if I was normal and healthy.

Normal Healthy Hillary is rowdy. X and I decided to wrestle.

This was definitely not the best idea and very short sighted thus inspiring me to continue the weekend responsible, with adult-overtones.

I really hadn’t been concentrating on my pain control needs, but along with transitioning Doctos and hospitals I decided it was probably time to get a hold on how much I actually take.

WHOA, the number is a shocker.

Over a two week period I took 100 15 mg tablets for pain. This calculates out to 107.14mg of instant release morphine a day so I can continue to be a productive, happy, contributing member of our society alongside having cancer.

Pick up your jaws from the floor people. I bet you never would have guessed, seeing me look so healthy an dput together.

Now know, this number does not even include the 30mg of long acting morphine I take every 12 hours to maintain a baseline amount of medication in my system.

This doesn’t happen over night, so plese don’t go worrying that your newly diagnosed relative will soon be taking these huge doses of narcotics just to function.

I have been sick for years now. Along with being sick has come therapy after therapy with side effect after side effect. There is not a single body system that doesn’t have a legitimate therapy induced reason to severely hurt me.

This is not the case with every cancer patient.

I’m speaking for me.

Praise Jesus Palliative care is on the case.

I had to keep myself painfree and functioning since on Saturday I was hosting a surprise bachelorette party for my lifelong friend, Nikki D., who happens to be marrying another very good friend of mine.

When I said I had an “adult weekend” earlier, you really thought I meant responsible didn’t you?

How cute.

No, it was bachelorette “adult” too.

Margaritaville, pickles and parrots, does life get any better?

Listening to Jimmy Buffet as my house was transformed into Nicole’s personal “Margaritaville” where everybody got “leied” at the door was definitely worth maintaining being pain free.

I also managed to whip up the world’s best Margarita. For all of you who asked here is the Recipe:

Nikki D’s Margarita Mango-Peach Recipe

1 galloon Jose Cuervo Mango Margarita Bottle (Premixed with liquor included)

1 Bottle V8 Splash Mango-Peach (This comes in LIGHT, too, for the future bride that’s watching her figure. These people should really pay me to endorse their products.)

3 cp. Margaritaville Mango Tequila (I didn’t know this existed, but I’m telling you it does. It’s good stuff, and I always thought Jose was my man. Hmmmmm, going to have to rethink this. . . . .)

1.5 cp Grand Marnier (The secret ingredient, no triple sec, cheapos)

Mix, Serve on the Rocks, Makes two gallons

I still have my magic drink making skills. I also made a Strawberry/Cranberry Margarita, but our friends, the chugalugs, didn’t even give me time to try that.

I will tell you that the mango drink was pretty effective in relieving my back pain.

No, I did not drink that much.

Why would I? We just went over my daily prescriptions needs. Who needs to drink when you are prescribed like I am?

We played Who knows Nicole jeopardy and did a little game aptly called “Pin the Macho on the Man.” Use your imagination for this.

We changed it around a little to accomadate a personal joke about how the only stripper Nic would accept was a midget just like the episode of “Friends” where Danny DeVito comes out stripping, but that is all I am saying.

Take a second and think about it.

When time was up and the white stretch hummer limo pulled in from Adventure Limos out of Swanzey, NH (I love this business, if anyone is looking, call them for your limo needs), I did have to decide whether or not I would be bar hopping the night away or whether I would follow my instincts and stay homesafe and sound.

Originally stem cell transplantation patients were isolated, in a bubble, for a year!

I haven’t met a years time yet. It’s up to me to protect myself. Being in active treatment certainly puts my at more risk.

I am pretty confidant the poles and cages at those places weren’t sterilized.

I opted to stay hime with the family, Pierce, my nephew, was having his second birthday party so the family was up.

This is all what I am talking about alongside the adult decisions I had to make. This is the boring “adult” portion of the weekend.

Yes, I had to think ahead, for my health. Not only would running to Manchester to dance and breathe in stagnant air I always run the risk of getting man or woman-handled or having someone sneak to close and steal a kiss.

Yes, people this happens, and honestly, I don’t want to breathe the same air as some of those people in some of those places. I don’t know where they have been.

Ironically, the girls got too drunk to even make it inside the club they went out to see.

I heard from most of them that they were certainly not too drunk. They were just really excited, hyper, and giggly.

I’m pretty sure that bouncers don’t reject a full bachelorette party with veil and pins and everything who are obviously okay with drinking for being hyper and exciting.

I am guessing they were drunk.

Just a guess.

They still had a good time of course.

I decided if I was going to miss out on this major event in the life of a person who I have befriended for over twenty years and functions essentially as a sister (She’s an only child. She needs me) I was going to make today productive.

I did.

I finally am learning to love the extra 15lbs. I’ve accumulated from the steroids and good eatin’ of the summer.

I have little lady lumps now and I’m loving them. I could use a couple extra pounds in the right places and some has settled in my bodacious booty.

I made it to Kohl’s this am with Heather and mom to hit the sales for cheap jeans, and score, I did.

I can now look good with my lovely lady lumps.

Let’s cross our fingers and hope I can keep the poundage on with my chemo TOMORROW.

I’m working at this too. We took a shopping tour of BJs.

I love BJs.

Ooops, my bad. It’s back to that adult humor again (just kidding).

I have a tendency to stock up on food like the end of the world is coming if I know I will become functionally disabled at a certain day or time.

This helps relieve my anxiety and it also helps me function and continue my health seeking practices while I am incredibly impaired.

Someone should give lessons to cancer patients on how to prepare their home prior to undergoing surgery or therapy. It makes life sooo much easier.

Recently, I went over how to prepare foods prior to chemotherapy by making meals with extra servings and freezing.

Now, I’ll move on to buying in bulk.

Paper products are definitely worth purchasing in bulk if you have the space to store them. However, lucky for those of you who don’t have the storage, paper products are also very affordable if you shop sales along with coupons.

There are ALWAYS sales and ALWAYS coupons for these items if you can wait and time it.

I can’t. I shop bulk.

I also like to stock up on cleaning agents.

BJs has bulk, generic sanitizing wipes. I bought these in conjunction with tissues for X’s first grade class.

I’m closing my eyes and envisioning that the wipes will sit right beside the tissue so the two have to go hand in hand.

I’m lucky I have a loving, motivated teacher who will enforce good hygiene all year. I’m going to help make it as easy for her as possible.

If you hadn’t guessed, cleaning products are a good buy too, but what I really went for are items to stock up on that are staples of our diet, especially items for Xanders lunch box and quick easy meals.

I got bulk chicken tenders and meatballs for easy meals.

I also picked up sauces. I love pastas and how creative you can be with the ingredients.

I have found that the Meditteranean Diet or the Latin American Diet fit alongside an anti-inflammatory/ anti-cancer diet I look to maintain.

Ideally, the Asian Monastatic diet is what I should be eating, but does anybody even know what that is?

I keep picturing noodles and water crests. I might wither up and die from starvation if I went that route.

I eat a combination of these two cultures meals, lots of pasta (whole grain of coarse) with olive oil and spices.

It’s theorized the herbal combination of mint, thyme, marjoram, basil and rosemary mimic the mechanism of action of Gleevac, America’s one “miracle cure” for cancer that allows cancer to exist in a person without it causing symptom.

The goal of gleevac is to have cancer without disease. It’s starting point began from actions that occurred naturally.

Not every cancer in the US is treated with Gleevac (Certain Leukemias and non-hodgkin’s are, but Hodgkins is not. Hodgkin’s is, however, treated with a medication similar to gleevac in India with much success. It really pays to have culturally diverse friends).

Pastas are great to through my magic mixture in, as are rices.

Finally, I stocked up on lunch box staples for X: Gold Fish, Ritz crackers, apple sauce, pudding, and gummy fruits. X will not go hungry for a while. I now feel secure and can rest easily.

Now, looking at my refridgerator and pantry, I’m ready for the next two weeks if misery happens to befall me.

I’ve gone on a long time rambling, sometime I will go over how I organize to accomplish the greatest health while in treatment, but that’s just not going to be today.

I do have something very special planned for tomorrow though, and I’m hoping I can get to it before I lose my mind with treatments. I’m going to talk about one of my favorite Hodgkin’s Warrior, Kara, and why so many people have been pressuring me to see Dr. O in NYC. So exciting.

1 comment:

brynn said...

okay so maybe we were drunk! haha...can i just say i love you and you are awesome! :) if you want to see the tubs of clorox wipes just come into my class i am pretty sure i have like 15 tubs! :) good luck today! i will be thinking of you! :)