Pain relief

I finally got adequate pain relief today. While waiting to get Avastin and Abraxane, the current chemo combo, I spoke on the telephone with Dr G. He decided to treat me with Lidoderm (lidocaine trasndermal5% topical patches. These are patches that distribute medication directly through your skin. The fentanyl patches are similar.

The wonderful pharmacist at the Cancer Institute, Lanny (I don't know how to spell his name), walked over to deliver the box of 30 patches to me. Our insurance coverage through Premera charged only $20 for this medication. I put one on in the middle of treatment at Dr G's request to see how well it might work while I was still in the chemo chair. Evidently the Lidoderm works extremely well, because Rik and I had a busy afternoon.

We went to the new Skillet Diner for lunch. It was not as good as I had hoped. My hamburger, ordered medium with a specific request for pink on the inside, not red, arrived overcooked and dry. There are few chances to eat poutine in Seattle, and I always jump at the chance (and am usually disappointed). Poutine is three things: fried potatoes, gravy and fresh squeaky cheese curds. The fries were terrific! The gravy, made with chicken stock, had plenty of herbs. But given that the local Beecher's makes really good cheese curds, I was disappointed to find melted cheddar cheese on Skillet's poutine. Maybe they think Seattleites don't know or care about authentic poutine?

Here's a shot of my poutine.
At least it came as a side to the burger and so wasn't an enormous helping.

After lunch, we picked up some bagels at Eltana. A tragedy was averted just in time -- we had run out of bagels this morning!

Nordstrom was having their half-yearly sale for women, and I really wanted to stop by while I had Rik to drive me. I did find a cute pair of black flats at a really good price. They might be a half-size too big, though, and I'd have to go to Alderwood Mall to find the smaller size. I will wait and see. Of course, while we were at the mall, I shlepped Rik into Macy's where there was also a sale, and I picked up a summer belt patterned in small squares of colors and a new purse, again in multiple colors patchworked together. It was a lot of shopping, but Rik was gracious about taking me, and I found such lovely things at good prices. Rik is the one who found the purse, and it is truly a keeper!

We came home and I watered the garden (we had two days of sunshine in a row!) while Rik mowed the lawn. Then I made us dinner of spinach and mushroom enchiladas suizas, rice and sliced fresh mango.

It's now after 9 PM and I am done for the night. I just took off the 12 mcg Fentanyl patch (it had been on for 72 hours) and removed today's Lidoderm patches. It hurt to remove them!, but we will see if I maintain good pain control overnight with the bedtime doses of valacyclovir and gabapentin. I will report to Dr G that I removed the small dose Fentanyl patch.

It felt totally terrific to be this busy for the first time in a week. I haven't cooked a meal in more than five days, ran an errand or driven the car in more than a week, or even been off the sofa this much in ten days. I know I may have overdone things (that's the trouble with pain patches, you feel good so you don't realize you do still have pain and it's easy to do too much). I may pay the price tomorrow, but there is only one item on my agenda, and I can do it from home if need be.

Time for a good night's sleep!

More on Folklife Saturday

I was sorry not to attend Dunava's special workshop with Tzvetanka yesterday, but my afternoon dose of painkillers (even taken early, at 330 PM) did NOTHING to address my pain. I would not have been able to sit down, much less concentrate on singing, just like my experience on Friday night at our rehearsal with Tzvwtanka, and those were songs I knew ALREADY!

I remember I said to Dr G my goal was to perform at Folklife. He said the same. I never mentioned the workshop, the big concert that continues for several hours after we perform, or Sunday night's  Balkan dance. In my experience, you get what you put out to the universe. I probably should have mentioned the other things, but I didn't want to overload my requests to the system.

I basically got into my pajamas Saturday afternoon and tried to ignore my pain. I have to come up with a better daytime pain management plan. I slept well last night (of course I took a dose of gabapentin at bedtime), but there was a big gap of pain coverage yesterday between 3 and 11 PM. Maybe I should call my doc today at home instead of waiting for when I talk to him during Monday's chemo.

I would like to be able to stay for the rest of this afternoon's Bulgarian concert, and I would like to dance at the big Balkan dance tonight. .... sigh ....

Folklife!

We had a great time at the NW Folklife Festival this afternoon. I woke up at 7 AM feeling fine, took some gebapentin for pain control and some valacyclovir, then went back to sleep. We got up for real at 9:00. After a big waffle breakfast, Rik walked the dog for his usual Saturday two miles while I got ready for the Dunava performance.

We had a quick run-through in the Center House lobby and were in place back stage early. Our guest artist was late and so even though we thought we could start our set early, we ended up beginning right on time and had so much material that we ended up cutting one song. (Folklife is sticky about starting and ending on time.) The audience was very responsive and I think it was a good performance. I will try to post some video Rik shot.

After our set, I was very hungry for lunch. We met up with friends and decided everyone should get their own favorite food and gather on the International Fountain to eat. Rik and I ended up with Indian food from a restaurant we often go to (but we're not sure it's the same place, so I don't want to say the name). I had chicken masala over rice and salad with plenty of  extra sauce on the side. Rik enjoyed a chicken kebab over rice. Prices at the food booths have definitely gone up over the years - each plate came to $8, and Rik's mango lemonade was $3.

We caught up with friends in the sunshine, talking about shingles, gamma knife treatment, and other and sundry physical health issues. Then the women decided to shop before getting dessert.

We browsed through most of the market. C bought shoes; Rik and C bought a Folklife t-shirt; G looked for a cool pair of earrings but no dice. As we parted company (some to stay and dance, others to crash), Rik and I noticed three hatters in one general area. I bought a terrific rusty brown raffia hat which is size adjustable. I think it will be prefect for shul this summer. My dessert was a chocolate mousse crepe with caramel sauce and whipped cream; Rik got a friut smoothie.

I had taken the next dose of pain meds and antivirals at 3 PM. Even so, I was completely steeped in pain and cancelled on the 4-6 PM workshop we had with our guest artist from Bulgaria. There is no way I could have learned new music while feeling uncontrolled pain.

Perhaps I am being overly sympathetic to my doctor, but I don't feel that this is enough of an issue to disturb his Shabbat rest. I will take the third doses of everything at bedtime,  which should give me a good night's sleep. If Sunday's pain is again unmanageable around 3 PM, I can call Dr G's answering service. Plus I will speak with him on Monday when I go in for treatment. You can be sure I will report these afternoon tough spots and ask for an increase in the gabapentin (neurological pain med).

Tomorrow's schedule includes showing up on time for the Radost concert sound check and being ready to sing at 3 PM. Dunava opens the show with two very short Bulgarian songs; then we accompany the Radost dancers for one number. About an hour later, we accompany the dancers for a second number. Given how I feel this afternoon, I think I will end up at home Sunday afternoon; maybe call Dr G to get his take on pain; and if I feel better, come back for the big Balkan dance Sunday night. This is a perpetual favorite dance and I will forward to seeing friends from all over at it. Hopefully I will see them tomorrow!

Shingles

Believe it or not, this is good news!

I called Dr G this morning about a rash that appeared overnight on my leg and he said to come in before the MRI scheduled for this afternoon. One look, that's all it took -- shingles!

When combined with the kind and spread of pain I'd been complaining about all week, the appearance of red vesicles (rash) enabled him to out all the pieces together. He immediately cancelled the MRI and started me on valacyclovir and gabapentin.

It will take quite a few days for the infection to clear up and perhaps longer for the pain to reduce. Gabapentin will also make me tired and I shouldn't operate machinery (i.e. drive a car) while taking it. I will stay on the fentanyl patches also, since one is supposed to increase the gabapentin slowly to a maximum of three per day.

I had chicken pox as a child and the odds favor that I have carried it around in my body ever since. There's little doubt low immune counts from the chemo caused me to be more susceptible to a flare up. That's also why I couldn't have the shingles vaccination. It's a live virus vaccine and would have put me at risk to develop shingles, which I did anyway.

The Centers for Disease Control and Prevention website says,

Shingles cannot be passed from one person to another. However, the virus that causes shingles, the varicella zoster virus, can be spread from a person with active shingles to a person who has never had chickenpox. In such cases, the person exposed to the virus might develop chickenpox, but they would not develop shingles. The virus is spread through direct contact with fluid from the rash blisters, not through sneezing, coughing or casual contact.

A person with shingles can spread the virus when the rash is in the blister-phase. A person is not infectious before blisters appear. Once the rash has developed crusts, the person is no longer contagious.

Shingles is less contagious than chickenpox and the risk of a person with shingles spreading the virus is low if the rash is covered.

So I will cover my rash, swallow the huge valacyclovir pills (1 gram, the size of my thumb!), and hope the gabapentin controls the pain soonest, plus remember that shingles is NOT MORE CANCER.

New oddities

Bobka the dog perched on my right leg for about 20 minutes last night while I was relaxing before heading off to choir rehearsal. When he got up, the skin felt numb and it's stayed so throughout the day today. In addition, I noticed some small, red dots in a circular pattern in two locations on my right thigh. I called Dr G's office this morning and he is going to squeeze me in for a physical exam before today's scheduled MRI.

Again, we can't do anything to address brain mets until we get the pain under control.

This really sucks.

Pain update

Yesterday Dr G put me on 50 mcg fentanyl patch and 10 mg Torodol every 6 hours. This did not control my pain well enough and I call his office several times throughout the day, asking for suggestions on better pain management. Finally at about 6:30 PM he called me and changed the dosages to 100 mcg fentanyl patch, 10 mg Torodol every 3 hours and added 1 mg Ativan every 6 hours. Other than making me woozy, we hope this will control the breakthrough pain. It's been 45 minutes since I made the changes and am still waiting for pain relief. However, the Ativan is giving me a nice buzz.

I had to write down the dosing schedule to be sure I get it right this evening. My goal is to get the pain under control so I can sing with my choir this weekend at our two performances. That's Dr G's goal too. It's always good to be on the same page with your doc.

For those who live in the greater Seattle area, check out my choir Dunava at the NW Folklife Festival:

Saturday 5/28 at 12:50 PM in the Center House Theatre. Get there early to find seats, it's a small venue and we are the second or third group in the set.

Sunday 5/29 at 3 PM. We open the all Bulgarian concert with the Radost Folk Ensemble and Orkestar RTW. Again, arrive early to get good seats.

You can also hear Dunava on last year's limited edition CD, Roots and Branches: Live from the 2010 Folklife Festival. Copies will be for sale at the Folklife Store, in the Fidalgo Room at the corner of Republican Street and First Ave N, by the Key Arena.

Abraxane #3 plus comedy of errors

I was scheduled to have the third dose of Abraxane yesterday. I'd been complaining of low back pain and pain in my right leg all weekend, so on Monday I didn't feel dafe driving myself. What if I had more mets and was in danger of a fracture? I'd already been lucky the first time that I experienced the pathological fracture while at home and not walking the dog, driving the car, or out and about elsewhere.

So Rik drove me and I arrived extra early at 8 AM (for my 9:30 lab appointment). The lab saw me pretty quickly, but again there was a computer problem with the orders Dr G wrote and "signed" electronically while I was sitting in the room with him. The SCI nurse called his office more than a few times; his staff paged him but he didn't answer; and in the end it was almost 1 PM before they could start any of the treatment. Thankfully my friend T was there to keep me company the whole time. We got some lovely borscht and pieroshkies for lunch and eventually I got everything: Decadron the steroid, Zofran for nausea and Abraxane.

In the middle of all this I was of course still in pain. On Sunday I had taken the maximum permitted amount of Vicodin with really limited pain relief. On Monday to took two Vicodin at 8:30 Am and two more at 1:30 PM but the pain only got worse. Dr G wrote orders for morphine but I recalled that morphiine didn't help too much with pain last summer. So I ended up taking intravenous Dilaudid. Between that and a hot compress, my back pain soon eased.

The Dilaudid made feel both loopy and me nauseous and I vomited several times by the time I finished the Abraxane. So I got some Ativan for the nausea. T gave me a ride to Dr G, who wanted to see me about the pain issue. (Thankfully no vomiting in the car.) Rik met us there.

I explained all the Dr G and he sent me off for immediate spinal xrays. Given that it was 5 PM by this point and he couldn't reach an in-house radiologist, he viewed the films himself. There is an ambivalent area in my sacraum (where we already know I have mets). My pain was radiating from the lower right to the right leg and even making the skin tender to the touch, much in the way that pain from the sciatic nerve behaves. So it might be sciatica or it might be mets. Dr G wrote prescriptions for Fentanyl patches and for ketorolac (Toradol), a non-steroidal anti-inflammatory, and we went into the Minor and James pharmacy to get them.

While we were waiting, in runs Dr G. He'd reached a radiologist at Swedish hospital who confirmed that there was no danger of an immediate fracture (which would have been the reason not to send me home). He'd placed a call to my orthopedist, Daniel Flugstad, and promised to contact me today with Flugstad's take on things.

We had a mutual hug fest right there in the pharmacy -- Dr G hugs Rik, Rik hugs me, Dr G and I look tearfully into each other's eyes. No hugging, it's not frumkeit for unrelated men and women to touch outside of the doctor-patient examination. For him, not for me. But the tearful glances of relief more than make up for any lack of hugs.

Rik and I finally arrived home around 6:30 PM. I stuck the first Fentanyl patch on my arm, got undressed, ate a snack and went to bed. With Dilaudid, Ativan, and now Fentanyl in my system, I could barely stand upright. I slept well all night and woke up rested this morning.

And now for the latest news. I still have back pain. I wasn't sure at first, as it's been creeping up on me slowly all morning. I felt fine in the shower, eating breakfast, even walking the dog for a few blocks. But sitting at the computer typing and talking with the health insurance companies about bills, I've notived an increased in pain, even through the FEntanyl. So I took one of the ketorolac pills and will hope that takes care of any breakthrough pain.

I still don't have any more news about an appointment re gamma knife, but Dr G said his staff would take care of it. I learned this morning that Dr G has spoken with Dr Flugstad and am waiting for a call back from him with an update. I will, of course, report this morning's breakthrough pain. I called my primary care physican to keep her posted on all of the hoohah. And I will keep all of you posted as this comedy of errors continues.

pain for the holidays

Since I forgot to renew my opiate prescription before I left for the holidays, and since I am subsequently curled up in the fetal position at my mom's house unable to move from excruciating pain and withdrawal symptoms (watery eyes, hot flashes & chills, MONDO headaches, excessive yawning), I thought I'd post about pain.

Chronic pain. The thing that follows after cancer, but no one seems to talk about. The thing that plagues my everyday life, but doctors can't seem to figure out. Chronic pain is eating up my life.

Now, everyone's physiology and background is different. I only speak for myself. I'm sure there are miraculous people out there that go through chemo, surgery, and radiation relatively unscathed and untouched. Cancer treatment lite, I like to call it. If you fall into this category-- lucky duck-- just scroll on down. If not, let's share our experiences with chronic pain instead of masking them, as young adults tend to do in an effort to be "normal" within their peer group. Perhaps the more dialogue is opened, the more physicians and loved ones will be able to understand and help us.

My chronic pain seems to be twofold:

I have deep somatic pain due to scar tissue in my hip, where the tumor was, and right clavicle/shoulder, where lymph nodes were plucked during the Thyca surgery. This pain is dull, aching, and absolutely unrelenting. This is my main issue and the thing that compromises my quality of life the most. When untreated by opiates, as it is now, this pain consumes me-- I can't focus on anything else. I avoid physical activity completely. It just does not let up. It's maddening, I tell you.

[Scar tissue from radiation has also caused a myriad of problems for my digestive system and bladder... but that's another painful story for another painful day]

I also have neuropathic pain all over my body, though mostly felt in my joints, presumably from 8 months of chemo toxins damaging the protective sheaths around my nerves. This pain feels sharp, stabbing, and sometimes tingly. It's rather unpredictable-- I get sparks of pain everywhere from my chin to my toes. I also experience neuropathic pain around my neck incision, where nerves have been cut & damaged. The skin there is numb to the touch, but even gentle pressure creates a sharp pain.

To combat all of this I use daily opiates, light stretching, pot, and hot baths. The opiates, obviously, are the only thing I've found that allow me to live a semi-normal, semi-pain-free existence. Unfortunately, these have all sorts of drawbacks, including increased dependency, side effects (I hate the grogginess), and nasty withdrawl symptoms. Plus, they're pricey. You need insurance. You need employment. You need a functional body to stay employed. You need opiates. Etcetera.

Until now, I had no idea just how much I rely on those little orange pills to function.

Do you have chronic pain, even years after treatment? How do your doctors respond to your concerns? Have you found anything that particulary works for you?

give a neurotransmitter a BREAK, mannn.

I can't remember what it feels like to not be in physical pain.

Of course I took it for granted; it wasn't even there until I hit age 23. Now... I wake up feeling like something has hit me, an invisible moving vehicle that I happened to step in front of. The accident can't be reversed, no matter how tightly I shut my eyes and reminisce about past-me.

The only time I don't feel pain is while sleeping. This is ironic, because I have chronic nightmares- every night is an increasingly ultra-violent scenario, usually involving me being captive and trying to outrun my captors, and of course, a tortured death. The end is usually grim-- I am on the ground about to have my skull kicked in, or I am shrouded and noosed and pushed off of a parking high-rise. I mean, seriously, seriously grim. But I feel no pain, and right before the final blow, I awake.

I wake up safe and warm in my bed, in pain.

I honestly can't decide which state I prefer, awake or dreaming?

what would you prefer?

Staying on fentanyl

I got smart and called the oncologist's office this morning to ask a nurse if I should continue to stay on the fentanyl patch. She asked good questions:

How long had I been on it already? (2 patches x 3 days each = 6 days)
Did I have any breakthrough pain? (some itching where my hands are healing)
How affected are my hands? (almost every affected area has opened, the dead skin has come off and those areas I've covered with bandaids)
Have I had any side effects? (a little constipation, easily addressed with prune juice)

The nurse's recommendation was to stay on the fentanyl patch for another two weeks to be sure that I have completely recovered and that I have no pain while recovering. To be sure, she is going to check with the oncologist covering for Dr G while he is on vacation and will call me back by the end of the day with whatever the doc recommends.

I'll see Dr G in two weeks anyway and he can supervise my slow reduction off fentanyl.

This was a great customer service experience. The receptionist was able to connect me with a nurse right away and the nurse listened to my concerns. That's one reason why I like my doctor so much -- he hires good people!

Fentanyl miracle

Our local pharmacy needed a few days to stock the fentanyl pain patch, so I had been continuing on the Vicodin every four hours. Yesterday afternoon we picked up the patches. You unpeel one and stick it high up on the arm, near the shoulder. It has an adhesive backing. Because the patch takes about 12 hours to become fully effective, I continued to take Vicodin until last night. The skin absorbs a constant dose of pain medication, so that your pain is constantly controlled and there are no times when pain increases at the end of one dosing period and before ou can take another pill.

I woke up this morning and my hands felt a little itchy but not the burning, stinging pain I had been experiencing. Even the tender tissues of my mouth and the sore in the back of my throat are less bothersome. I was able to wash without feeling pain while I held the bar of soap, brush my teeth, swallow pills and eat breakfast with much less discomfort. Asking for this pain patch might have been the smartest thing I've done so far in regard to managing the side effects of Doxil.

I'm so high maintenance

pain status: same as before, but now a lingering fatigue. I can sleep 14 hours and wake up tired. Also, my bones hurt. It feels exactly like the pain I got from Neupogen injections, like hot lava in your bones, burning and radiating out. It makes me restless, I want to stretch and shake the pain away. My fingertips are tingly. I yawn a lot. I've had a constant nausea for the last few days, which makes food unpalatable.

I've been having a tough time keeping up with life. This is a hard thing for a perfectionist to handle. Harder, harder, work harder to be normal. You must hide your physical pain, you've got to fight off your anxiety, you need to combat fatigue. Take your pills.

My collection due date is in exactly one month and one week.
work work work

My friend is dying slowly, but much faster than me. This is terrifying; to have a window into what will probably (50%) be your own unwanted fate. A flip of the coin. Every moment my mind is left to wonder, it wonders about death.

It crosses my mind frequently that this collection may be the last I ever design. So it's got to be good. It's got to be. perfect.

Anais Nin once wrote, "I postpone death by living, by suffering, by error, by risking, by giving, by losing".


I postpone death.

no rest for the wicked

pain status: gradually increasing aching at tumor site, lower back, and left femur. The pain has been waking me up around 1 or 2am; I can't return to sleep unless I've taken 2 percocet and smoked a bowl. I will henceforth be referring to this blog as "increasingly annoying late-onset scar tissue pain is hilarious." Make note in your bookmarks.

This quote is from one of my favorite books, Letters to a young Poet. I had it on my wall while I was going through chemo. Don't be scared, rather, appreciate the unknown.

“Have patience with everything that remains unsolved in your heart. Try to love the questions themselves. Do not now look for the answers. They cannot now be given to you because you could not live them. It is a question of experiencing everything. At present you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day.” -Rilke

I want to be de-cancered.

Kairol Rosenthal will be at Modern Times in the Mission next Wednesday to read from her book, Everything Changes. I will be there too, so if you are in the area, let's meet up and exchange horror stories...

My mom gifted me Everything Changes shortly after it came out. I had just finished treatment. I sifted through some of the pages thinking, "This would have been great a year ago". I wanted nothing to do with cancer, I wanted it to be solely in the past. So I put the book down and went on with my self proclaimed un-cancerous life.

But, Kariol's book is a resource for those who've already ridden the cancer roller coaster and lived to tell about it. One thing that is becoming more and more apparent is that I'll never rid myself of that death-defying thrill ride. It wasn't the cancer itself that was traumatic, it was the treatment. And, the treatment rarely cures us. It affords us more time, at the very least, and for that I am grateful.

I have been attempting to manage my chronic pain via Kaiser's services. It's slow going, with the majority of treatment lines requiring you to take weekly classes that have little to do with anything before you start the program. Once I'm past all of the red tape, I hope to learn to manage all of these nasty after-effects, both physical and psychological.

One quote in Everything Changes that perfectly encapsulated my sentiments:

"I felt like I had to fight for my right to be pain free. My Nurses made me feel like a drug addict after my bone marrow biopsy. 'Nobody else needs pain killers,' they said, all condescending. Sorry, but I'm the boss of my own body." -Dana Merk, 24

WORD!

Listen to your body, not your doctor.

Scan Results: NED. Woo! 8 months cancer free!

This hospital trip was slightly better. I was able to hold it together until the Asian lady at the bakery refused to serve me. Isn't that always the way it goes? You keep a straight face throughout the day, and then the tiniest insignificant obstacle causes a full blown shit-fest.

I gritted my teeth through the port flush. I asked my Onc about disability options and was denied (damn kids trying to abuse the system). I voiced my concern over worsening chronic pain in my hip/back/everywhere and, because my scans are clear, was not-so-subtly accused of opiate dependency (damn kids trying to abuse the system!). Because scans tell ALL, right? If the scan says I'm not in pain, I guess I'm not in pain.

So, feeling defeated despite the joyous news of N.E.D, I sought respite via coffee and pastries at the Kaiser cafe area. I order my shit. I have no cash. I am three dollars away from being able to use my debit card. "No card, under limit!!!" militant Asian lady snaps at me. I am unwilling to buy 4 more muffins just to be able to use my card. Defeated again, I ask, "can I have a cup of water?" She slams a little paper cup on the counter. "Fifty cent!!"

I stare at her. Are. You. Fucking. Kidding me. You will not give a cancer patient a mother fucking dixie cup? And then I lost it. Like, completely lost my shit and sat bawling, hungry, and humiliated in the cafe until I could pick up my prescription.

Moral of the story: If you are poor, always carry cash. If you are a cunt, don't work at a hospital.


So, back to my Onc visit. Now that I have hair and look like a normal twenty-something, I am noticing a massive amount of skepticism and disbelief when it comes to medical issues. There seems to be a general misconception that young people can't be trusted. We just want drugs and attention. People, even medical professionals, fail to realize that Chemo completely rapes and pillages your body, causing long-term issues unrelated to cancer. Chemotherapy annihilates cancer (if you're lucky) just as it annihilates the rest of your healthy cells.

If I were to listen to my Doctor, I would be taking Ibuprofen and hot baths for debilitating pain. I would assume the pain is all in my head. Which was exactly what I was told before my Cancer diagnosis.

I am angry about all of this. Livid. And I'm not quite sure what to do about it, suffice to say: Listen to your body, not your doctor. Do research yourself. Find your own solution. Make your own educated diagnosis. Get second and third opinions until you finally find someone who will listen. Don't sit back and suffer.



oh and p.s.- I'm still working on getting my computer fixed. Despite the rant above, I am so so happy to be in remission. I'll take my pain over cancer any day...

life is a struggle, right?

A brief update: I am currently working on my senior thesis collection for fashion design; a culmination of my college work and personal artistry. It is exciting and rewarding and STRESSFUL AS HELL.

Normal stress after cancer is proving to be an uphill battle. In my pre-cancer days, I'd stay up for days and a time, drink gallons of caffeine, and kick out a project that I could be (reasonably) proud of. My body would recoup in a few days and I'd be fine.

Now, things are drastically different. I am managing my time well and have allowed time for rest, but my body is screaming at me. I like working with a deadline, but I worry that my body won't be able to keep up with the demands I'm putting it through. 10 hours a day, every day, I've been draping, pattern drafting, sewing, drawing, crying in the shower with my clothes on, all with wide-eyed anticipation for May.

After a few days at work my muscles are burning. Everything aches, from my back to the tips of my fingers. I've had a cold that's been waxing and waning for 3 months now. My PTSD symptoms are out with full force, presumably due to all of this stress. I am not complaining, I'm merely documenting my experience. I understand that cancer, PTSD, stress, and the general "failing" of my body won't go away, and I'll need to cope and adapt. That said, I am the happiest I've ever been in a long, long time. Or perhaps, just more appreciative of happiness... :)

Here is a really great, accessible essay on PTSD. I relate to just about everything that is written.

Here's a sneak peak at one of the muslins I've been working on:



So basically, in a nutshell, I'm stressed and in pain and it sucks, but I'm trying to work it out. [Not "make it work", I swear, the next person who says that to me gets a pressing block to the head.]

apres moi le deluge

It's so easy to forget you had a life-threatening illness once you're better. Yes, I talk about cancer, but I am often detached from the subject. It has become foreign to me again.

I haven't slept a wink for days.

I'd been working on a school project like I always used to do, all night long, when suddenly cancer slapped me upside the face and I realized it's been 5 months since the end of chemo. Five months and I'm relatively normal again. Friends, school, design, work. All of this could come crashing down again any day now. Maybe I am just anxious for my scans this month?

I haven't slept a wink for days.

I've been trying to write about treatment in hopes of some sort of catharsis. It's a memory and a place to which I never want to return. Below is a bit of it. That's what cancer is like. Seriously. Exactly that.

Remember lying amidst the savage darkness, the hollow sound of idleness, waiting to either die or live, but only waiting. Wishing fate had a backbone. The feeling of your body plotting against you, wanting to reach in and exhume your disease, to tear apart tendons and scrape the bone clean. Oh, to be clean. Fevers like little deaths, dying only to be painfully reborn again by sunrise, watching that glowing orange eye rise and wink, upon which you realize the world must be mocking you. You'd rather end than watch the cruel parody of daybreak again. the sky is insufferable.

Unable to walk, unable to get out of bed. Jealous of the dust bunnies and all other moving unknowing things. The minutes build and you bear them on your shoulder like phantom bricks, the heavy load of an empty moment, and then the hours come, inevitable, breaking your back.

remember the retching. A wretched way to live, waves of sickness like the tides coming in, swelling up and foaming at the shore. A tidal heaves up, up, and out, crashing down, we've had an exorcism all over the kitchen floor, hallelujah, praise jesus. I exorcise all day long. they say it's good for the soul. After the floods an eerily satisfying calm settles in, as if the body has made peace with it's own volatility.

remember the killing machine, the feeling of poison pumped through your veins, the sting of the needle as it went through your chest. You could taste the chemo under your tongue. It would not go away. It became part of you and you became it, inhuman. You would sweat inhumanity. Murder poured out of your pores. The paradox of your body wanting to live, violently so, and your only cure is to kill it...

On a scale of one to ten...

That's what they always ask you: Where is your pain on a scale of one to ten?
The question, of course, is, what's ten? I imagine ten to be Joan of Arc at the stake. A man being hanged. Amputation without anesthesia or even a bullet. I don't know ten. I don't ever want to know ten. And if ten is supposed to be the worst pain I've ever felt, what use is that? How can every patient's ten be the same?
The better scale is the FPS-R (Faces Pain Scale-Revised).

When Nurse L was trying to assess my Taxol-induced bone pain, I said it was a three. Then I described the pain to her and she said it sounded like ten. Again: compared to what?
Cruel and unusual, J mused when he was 12 and in the hospital for the sarcoma that eventually killed him. Unusual punishment, he said--they could put you in a room filled with butterflies. That's unusual.
And what's worse than a root canal is a dental implant, which I am in the middle of experiencing. On Thursday the periodontist pulled out the remains of tooth #19 (penultimate molar on the left side) in two pieces, and then drilled a hole in my jawbone and stuck a post inside.
Later the dentist will connect another post to the top of the internal post and then fashion a crown around it.

Meanwhile, my bone is supposed to welcome the new foreign body into my skeletal system. It will become part of me, by osmosis. (Not really, but by ossification.)

The periodontist gave me a prescription for 18 tablets of 600 mg ibuprofen (one refill allowed) and yes, 14 antibiotic capsules, a strange one I've never heard of: Clindamycin. It's a turquoise bullet. The last day my jaw has ached. How much? Sometimes in the whimper stage. That's the only way I can calibrate pain. First there's Complaining then Whining then Whimpering then the Fuck! stage and then Crying, though saying Fuck! and crying can come upon you at the same time. Then there's Weeping. Even in yoga I've felt that Fuck!/near-crying pain in my hips when we do variations of the lunge or runner's pose.
I had decided to call the periodontist and tell him about my pain. I would also have to tell him about the disappearance of the thread he used to make stitches. The thread was loose last night and then (as dumb as it sounds) I chewed on it until it broke and now there is no thread. It was supposed to dissolve.
I had decided to break out the codeine but after ibuprofen I'm back in Complaint only.
Elaine Scarry wrote about pain. I read some of her book, The Body in Pain, several years ago. From a quick look at reviews and summaries on line: She says that it is so very difficult to describe pain, that pain leads to destruction that "unmakes" the world.
The opposite of creative, generative. Pain is negative proliferation, creation turning in on itself, crabbed, deformed. Pain sounds a lot like cancer, like evil, the void taking over.
Pain, as Snoopy once said, hurts.
L's mother wouldn't take her pain pills at first. Then she did.
Our friend B had a hernia operation then came here a few days later. This was in spring. He wouldn't take pain medicine because he wanted to feel how strong the pain was.
I'm as curious as the next person but after I feel pain I want to get rid of it. Now. The ibuprofen dulls the ache some, but there's still the underlying pain. How much? Does it distract me? Yes. But then I'm easily distractable. Is it making me complain or whimper? In between. Maybe I will try the codeine tonight, left over from some other procedure. We do have well-stocked shelves of medicine, we have much to offer in the way of relief. And we will not be too proud to use them.
Meanwhile, my itching is starting up again, a side effect of my polycythemia vera, my blood disease. Sometimes the itching is mostly burning and it so painful and inremitting that I feel despair. Which is not a stage of pain, but something altogether different. And now I will take an Atarax and the itching will fade and disappear and I will go to sleep.

Trigger Happy

I haven't told you, beloved blog readers, because I don't want to be worrisome, but I've been having pain where my tumor used to be. It's been an ordeal to find an oncologist here in San Francisco- they won't assign one to you unless you've seen a GP, which I don't have, duh, because I have cancer. It took weeks to get a referral from my own oncologist back in Sacramento, but finally, I was able to get an appointment on Tuesday.

This was my first time in SF oncology and, um, talk about triggers. They make you wear a wristband regardless of whether you are getting chemo or seeing a doctor, while in Sac they only banded me for chemo. So, as you can imagine, the band sent me into panic mode and tears started welling up in my eyes.



Fast forward to the doctor visit, they don't think my pain is cancer related since I was NED on a scan 3 weeks ago. It's probably scar tissue, but we will "watch and wait" (don't you love that phrase?). I asked when I could have my port taken out, and the onc said I've got to wait until my next scan. "But when is the last time you had it flushed?", she asks. "Uh, May?" I mutter. Oh crap, I forgot about port maintenance. "You need to get it flushed TODAY." Double crap. I can't face the infusion room just yet. But... responsibilities and such. So I sit in the ugly mauve alcohol soaked recliner and try to keep it together.

No such luck. I start hyperventilating and sobbing, trying to explain to the nurse that it's the first time I've been back since chemo. She just looked sorry for me. I sucked it up towards the end and got my saline/heparin injection just like I've done a million times in the past. I was numb throughout my treatment, but now that the trauma has settled in I'm a nervous wreck during such small procedures. I hope it gets better.

On the positive front, I am getting ready to start my senior year of school, the one that I had to quit in leiu of chemo. I am excited. Let's hope I make it past the first class this time!

Burning Hunk of Boob

I just woke up--guess what? I still have cancer. I *hate* that! When's that gonna stop happening?--when I wake up in the morning and suddenly, I remember it's for real...??? It's weird--it's like when I eventually sleep at night, my mind just tries to repress the hell out of the reality so that when I wake up, it's a shock all over again, like in the movie Groundhog Day. Weird!

Last night, my tumor burned. I'm not sure if that's supposed to happen. No matter if I lay on my side or on my back or even when I got out of bed and stood up, the big tumor, the one that's obvious to the touch, was burning and had shooting pains. I should call and ask the nurse about that. Maybe it's just that freakin' big.

I apparently qualify for a trial for a more aggressive type of chemo, so I have to call them today to agree to be on the trial. You know what I really got a kick out of yesterday? The prescription they gave me for a wig. Cancer does have its perks!