Tuesday, July 31, 2007

Better the 2nd Time Around

Today, I had my second chemotherapy treatment. I feel really good so far. I did a few things differently this time. I'm not sure if that helped, or what, but I feel better than I have most of this past week.

Things I did differently:

Yesterday, I gave myself permission to rest when I was tired.
Yesterday, I drank Gatoraide mixed with a splash of real juice to make the taste bearable in order to replenish what I had lost with the diarrea from yesterday and the two days before.
Yesterday, I enjoyed dinner and drumming with Deb and three of our close friends.
This morning, before I went to chemo, I didn't have to go to the hospital to get a PICC line put in, so I wasn't as nervous.
This morning, before the cisplatin was hooked up to my IV, I energized it with intentions of healing instead of viewing it with fear.
This morning, I meditated for a few minutes during the beginning of the infusion.
During the chemo, I didn't even try to read, I just talked with the other people that were there and focused on hearing their stories and sending them love and light and healing intentions, instead of focusing on my own crap.
After the chemo, I ate a lunch balanced with protein, carbs and veggies (Deb and I went out for Chinese food.).
After my radiation, I went home and slept for about 2 1/2 hours.
When I woke up, I felt wide awake and energized. No nausea, no fatigue, diarrea, constipation or headache.

I'm not sure if anything I did helped, but I certainly feel better than last time.

Sunday, July 29, 2007

Balancing Life and Exhaustion

I'm even more tired now than I was before, especially since the chemo started on Tuesday. So far today, I haven't been nauseated, but just going to church made me exhausted, and I didn't even do anything but sit in the pew and talk to a few people afterwards. I was kind of worried about my PICC line around the dogs, but Indigo is the only one who has bothered it at all, and she has learned to paw me on my other arm instead of the one with the tubes sticking out of it. Because of the steroids to combat brain swelling from the chemo (yes, I know I've had a swollen brain for a while, but generally steroids don't take the ego down a knotch, just the brain matter itself), my blood sugar has gone way up, so I'm on a new med for that, at least until the chemo is done.

It's kind of weird being able to sleep at night. Of course, still the only way I'm sleeping more than 4 or so hours at a time is by taking a sleeping pill. I hate having to pump more extra crap into my body just to sleep. I was up several times last night using the bathroom, and several times the night before waiting to see if I was going to throw up or not. Ahhh restful times. Mornings actually seem to be my best time right now, not as exhausted or sick feeling. Early afternoon is when I start getting tired. By late afternoon, I sometimes lay down, but can't sleep without the sleeping pill which I don't want to take except at night with at least 8 hours stretch in which to sleep, so I'm not really napping even though I feel like I need to.

Even though I'm going to radiation every day and spending all day Tuesdays in the chemo center, and the several days after that fighting side effects,I am trying to do some good things for myself so that I'm not totally focused on the cancer and treatments. That way I don't feel so much like I'm losing my identity to the illness. Yesterday, I watered my garden, Friday, I finally started seeing a shrink, and I've been having meals with friends now and then so I don't feel so isolated. That way, Deb and I can both see people without being in crowds with her compromised immune system and my unpredictable energy and stomach. A couple of people at a time is more manageable.

Deb has been great about flushing my PICC line for me, supporting me without suffocating me, being a nurse, friend and partner. She has not been feeling well the past few weeks, bronchitis, but seems to be doing somewhat better the past couple of days.

Wednesday, July 25, 2007

Pain, drugs, gratitude and perspective (as well as the possibility of vampire rat conventions between my armpit and my elbow.)

I just took a little blue pill to help me sleep.

I just took a little seafoam green pill to help reduce any swelling in my brain caused by the cisplatin (chemo drug).

I just took two oval yellowish nasty tasting pills to get rid of the bronchitis/pnemonia that I've been walking around with since probably November or December.

I just took three medium white round pills to help boost the big yucky yellow antibiotics.

I just took two oval white pills to help to break up the conjestion in my chest due to the bronchitis/pnemonia.

I just took two puffs on one inhaler.

I just took one puff on another inhaler.

I just took two yellow capsules as part of my complementary medicine approach to the cancer.

I just debated about taking my perscription fish oil capsuls but decided to wait until tomorrow due to their blood thinning properties.

This morning I took one squarish pill so I don't sneeze and snot all over myself every time I even look at my cats, one of whom likes me to pet her while I'm in the bathroom and one of whom likes to sleep on my pillow and purr and drewil (I know I spellllled it wron, I'll explain that one in a minute.)

I just took another pill to keep from throwing up (I believe my insurance company pays about $30 per pill or more for that one.)

I have felt fairly drunk/stoned for about the last 8 hours, I think due to the other anti-throw-up medicine that they shot into my PICC line this afternoon (thus, my glassey eyes, slurred speech and messed-up spelling and writing).

They also put in a steroid, another anti-nausea medicine, (I think something else can't remember),2 liters of saline, lasex, and poison that will help me kill the cancer, while all the other stuff is to help counteract the helpful poison.

They stopped the drip and unhooked me in the middle so that I could take the elevator down two floors to get radiation in four points around my lower abdomen and tell the radiation doc that I'm fine, started the chemo, no side effects yet from either treatment.

They gave me a subcue shot in the back of my arm so that my kidneys wouldn't soak up the cisplatin, but would let it slide through (like an "oil slick in my kidneys").

I've been peeing every 15-60 minutes due to the almost gallon of water I drank, the 2 liters of saline in my vein, the oil slick drug and the lasex during the last part of my treatment.

And before all that, after having the nighmare PICC line experience, I had to wait in the waiting goom for over two hours before going in back, getting the line flushed with saline and heprin, and waiting another 1/2 hour or so before getting hooked up to the anti-puke meds and saline.

I had my first panic attack today, just as they were finishing up putting in my PICC line. (That was a really interesting sensation. It came on just as I was letting go of my panic since it was done, not in the middle of it. I felt like an elephant was sitting on my chest, with some pain in my solar plexus and heart areas. Pulse normal, heart rythem normal, pulsox never went below 92, blood sugar 124. Go figure.)

One of my cat's is eating the $100 bill that I owe to U of M Flint for dropping classes a week into summer semester. (I was a little pre-occupied to drop out earlier and I thought the semester started later than it did.) Someone let my soc prof know that cats really do eat homework!!

When the IV nurse tried to insert my PICC line (an extra long IV that stays in long term and places the medicine in a vein just north of the heart), she used the ultrasound machine to find the vein she wanted to use. She gave me two shots of lidocane to numb up the area, which hurt like crazy. Then, she inserted another needle near that spot to try to get it into the vein, using the ultrasound as a guide to the vein. The lidocane hadn't totally numbed it, but the pain wasn't that bad. The first time. She got into the vein, got a bit of blood out of it, which is good, indicating it is in the vein for sure. Then she inserted a guide wire a couple of inches where it stuck and wouldn't go any further ('twas supposed to be 43 centimeters). So, she pulled out the wire and tried again. Found another vein, gave two very painful shots of lidocane and the vein suddenly disappeared from the ultrasound. Tried again, went very much like the first try with the wire, and the lidocane totally did not work. On this try, I did keep my arm still, but I was kicking my feet and yelling "Ow, F....." at least twice. Maybe more. And I was crying (which I very rarely do in front of other people, but seem to be doing a lot these past couple of months). She went to get the other, very busy, more experienced nurse. This second nurse was much handier with the lidocane, but again, my veins kept dissappearing. She tried another 3-4 times, I lost count. I'm going by the found veins and lidocane punctures. Deb says that doesn't count, only when they got into the vein with needle or guidewire. By my count, I see 9 areas that were at least punctured with two lidocane needles, and about half of those have additional needle punctures indicating that they tried for the vein there. (By the way, they could't find a vein in my left arm, this all happened on the right. My dominant hand.) Finally, when I was about to walk out in frustration, pain and anger, they called radiology to see if they could put in the line. They said that they could do it on Thursday. I cried again and yelled, "I was supposed to have started my chemo about ten minutes ago!!". Radiation agreed to squeeze me in today.

I went to radiology where a very well organized team worked together to insert the line. The Physicians' Assistant found a vein in the left arm. She hit me with one shot of lidocane, but spread it out enough to cover the area well. They waited a minute or so to let it take effect. Then she put in the needle. Saw it in place on the ultrasound. Then, put the guidewire in while watching an x-ray to make sure the placement was perfect. She even let me see when she was done. It was pretty cool. After all of that was when I had my "panic attack" after the panic subsided. It was interesting and scary, but mostly interesting.

Before the bruising showed up on my right arm, when just the needle pokes showed, it looked like I had been attacked by a pack of vampire rats in the tenderest part of my upper arm. Now the bruises are there along with the pokes and instead, I look like a junkie who couldn't decide were to shoot up.

I went to a friend's house for her religious birthday celebration. One potato chip made me nauseated, but carrot cake, greek salad and spaghetti went down fine. Didn't want a beer because I already felt like I'd had a pint. I got hot in the house, just as she turned off the air conditioner and opened the windows. I thought I was going to cool off more. I got warmer. We went outside for our final goodbyes and finally, I couldn't stand to keep my big mouth shut. I asked, "is it warm out here?" They all laughed and said no. I realized that I was probably having my first hot flash. My period stopped with the second radiation treatment last Friday. Today is Tuesday (actually, Wednesday). Yet another reminder that I will never have children. (My brain can't figure out why that's a problem, since Deb and I years ago decided not to have children for several reasons. But, if we ever did, I would be the biological mama. But now there is no going back on that choice. Ever. No kids. Nope. Never.)

Today, I had a lesson in humility and gratitude as I talked with the other chemo patients sharing space with me. One, like me, was on her first ever cancer journey. Hers is in her lungs. The others have had long hard battles before and are at the beginning of another one. My measily once a week experience is nothing compared to their daily chemo, in addition to pumps to take home and continue the process between treatments in the clinic. A messed up port and a woman whos bones and joints hurt because of the treatments and she was so skinny that it hurt to lay her hand in her lap. She used a pillow. Doctors not communicating with one another seems to be the norm rather than just my own personal reason to be pissed off and losing sleep. Several of us there are on sleeping meds because of insomnia due to all of the terror running loose in our brains. Even for those who have had cancer before. They know the procedures and protocols, but each time, they experience the terror all over again like I did today and yesterday when looking toward getting a PICC line.

I pray that I can keep my experience inperspective.
In 100 years, this journey of mine won't matter to anyone.
In 1000 years, this journey of mine won't need to be taken by anyone because prevention will be the norm.
I pray that each of the women who were in the room with me today experience true healing for whatever the divine sees fit.
It may be physical healing.
It may be a solid night's sleep.
It may be a pair of comfortable pants.
I pray that my illness does not define my wellness.
I refuse to become my diagnosis.
I embrace my body's remarkable healing potential and use these treatments as tools along that journey of healing.
I am learning to ask others for help.

Saturday, July 21, 2007

Another Freaking Step on the Journey

I got my second radiation treatment and saw the chemotherapy doctor yesterday. My skin felt a little hot for a few hours after the treatment, like a mild sunburn, but not for long.

I will get my first chemo treatment probably Tuesday. That morning, I will have to go to the hospital to get a pic line put in. That kind of freaks me out because I won't be able to swim, or even shower for 6 weeks or so. I'll have to take spit baths. I won't lose my hair because cisplatin, the drug I'll be getting, doesn't cause hair loss. I think that is the only drug they will be giving me. The doctor didn't want to put a port in because it will only be for 6 weeks. He said that a pic line is less invasive. (Deb explained both procedures to me and both sound invasive to me, and scary.)

Evidently, the chemo and radiation were supposed to start at the same time but the report from U of M never got to the chemo guy and the radiation doctor never bothered calling him even though he knew I was supposed to get chemo as well. So much for coordination of care. One more reason to freak out.

I'm still having trouble sleeping. I'm freaking out more about the cancer treatments than about the cancer itself.

Thursday, July 19, 2007

It Begins

Today was my first radiation treatment. It's kind of weird, I have to lie in the exact same position that I did during my tatooing and cat scan. I didn't really feel anything as the machine rotated around me to make a loud noise while pointing at each of my three tatoos in turn (each hip and a bit below my belly button). There was about 10 seconds of noise on each site and then it was done.

The side affects shouldn't kick in for another week or two.

I meet with the chemo doctor tomorrow.

Wednesday, July 18, 2007

This is no glass menagerie

For those of you who have not been to our house, Deb and I share our space (actually, they share with us because we feed them) with 5 animals. 2 cats and 3 dogs.

Indigo is a mostly black border collie mix whose passions in life include: loving pretty much every human being that she meets, hunting squirrels, getting petted, hunting rabbits, snuggling up to humans as close as she can, hunting possums, sleeping with children who visit, hunting mice, loving pretty much every human being that she meets, laying in mud puddles, jumping up on everyone she meets to say "hi", hunting humans with free hands to pet her, bringing dead animls in through the doggy door so that she can share them with her mamas, and being the referee when the other two dogs are playing.

Pippin is an extremely shy border collie/lab mix. Her hair is silky soft and her interests include: Sleeping with mom Aimee, hunting squirrels, sleeping with mama Deb, pretending to hunt for rabbits, licking moms' feet, spying on strangers so that they can't see her, but she can see them, licking moms' faces, hiding from visiters (including the troll in the basement), herding moms and sisters whenever the opportunity presents itself, barking at people outside as long as they are on the other side of the fence and playing with her sisters when they will let her.

When Pippin was very small just off the farm, she walked right up to the giant schnauzer we had at the time and decided that Ashee was a sheep that needed to be herded to somewhere other than where she was. Ashee wanted none of that.

Little Bit is the matriarch of the pack. She has been the undisputed Alpha since Ashee died. Little Bit's interests are: lying under the massage table to eat up stray strands of energy during Reiki treatments, chewing on her blanky (or moms'), hunting, eating, lying under the dinner table to make sure she gets first pick of any dropped crumbs, helping mom cook by staying right under her feet while she works just in case a food spill needs immediate attention, chasing the cats, wrestling with Pippin, snuggling with moms when no one else is around to steal the attention. Little Bit is a blond scruffy terrior mix with.....Purple Polkadots?!....must be mulberry season in Michigan.

Sunday, July 15, 2007

7 Minutes of Fame

I just got done having coffee with my dad as he passed through town on his way to my sister's house. I didn't make it up to Blissfest this weekend to see him because there were thunderstorms and I didn't feel like sitting in the rain and being a lightning rod.

Pop told me that he had his 7 minutes of fame on the main stage this morning. Not even during the thunderstorms and I missed it. Maybe next year. He mentioned that he would like to camp there sometime instead of staying at the cabin and walking to the site. I think it would be fun for he and Deb and I to take our camper up there for the weekend of the festival some year soon.

Pop's voice is in the same range and of the same type as Johnny Cash. Pop's politics parallel Cash's liberal, inclusive views, so I gave Pop a Johnny Cash songbook for a belated Fathers' Day gift. I hope that the next time I hear him play, that he has some of this radical cowboy flair to his show.

If you are interested in knowing more about Blissfest, a home-grown Michigan Music festival, check out the link to the right, where my list of links is.

Late June-The first gyn oncologist (adaptations from e-mails)

As far as they have done any staging at all, I am still in stage 1 cervical cancer, which is early and highly treatable. The one and only gyn oncologist here in this city said that I am too heavy for a hysterectamy and will only consider radiation as treatment for me. Radiation would probably make sex painful for the rest of my life, but a hysterectamy poses risks for bowel or bladder perforation or worse. It's a tough decision. I am getting a second opinion at U of M on July 9 to see what they have to say.

The one and only gyn oncologist in the city is a homophobic pig and I am not willing to let him touch me again. He was very unprofessional, but because I was desperate for answers and he is the only one here, I had to put up with his 30-40 minute tirade on how the liberals and the blacks are ruining this country. He (who works in a hospital committed to serve all, regardless of ability to pay) ranted on and on about how single women on disability "have no right to be pregnant again."
In his very first statement, after I introduced myself and Deb, my partner, he began going on and on about how Deb and I should not have the "special right" of getting married because there is alternate legal paperwork that we can do to safeguard our rights to see one another in the hospital and to safeguard our joint property. Even though he excercised his right to those things simply by signing one paper and saying "I do".

Hmmm, nope, don't think I'll let him touch me again. I don't trust him. And, because of his verbal aggression and prejudice against lesbians, I don't trust his medical judgment as far as my body goes. I long ago quit being political about gay rights, but when something like this happens, it makes me angry all over again. I want to be done with that fight. But obviously that fight is not done with me.

Friday, July 13, 2007

It's a Good Day

I couldn't fall asleep last night. Once I finally did, I slept in until 10am or so. My back was sore from contorting around the 3 dogs and one of the cats (Biddy-named after my mom who was named after a chicken). When I finally rolled out of bed, I decided to make this a day to take care of myself. I worked out for about 40 minutes, then I went and worked in the garden for a couple of hours.

I pulled lots of weeds, and planted yet more tomatoes. I know it's way too late to plant tomatoes, but the garden got started late this year and I have all these seedlings that have been waiting patiently to get into the ground. I planted an entire bed of Brandywines and another of Jubilees, both are heirloom tomatoes that taste delicious. The volunteer tomatoes of unknown variety that are popping up in the middle of my gravel walkway are doing great. A couple of them already have yellow blossoms on them, along with the tomatoes that did get into the ground mostly on time. One of my eggplants also has a huge purple blossom. It is so pretty with it's big leaves and purple blossom.

Even though we didn't have as many grubs this year, we certainly have our share of Japanese beetles. They are stripping the leaves from our grapevines, and I even saw them in the mulberry and apple trees this morning. I have never seen them there before. I knocked between 100 and 200 of them into a bucket of water to drown them. It will take a couple of days before they die. There were thousands that I didn't get. They are so beautiful, but so deadly to my plants.

Then, after coming back in to the air conditioning, a friend brought over some skin care products that have very few chemicals in them so that I can use them while going through the cancer treatments to try to minimize the radiation damag. Since the chemo will be poison enough, I don't need to add poison by using impure cleansers, shampoo and conditioner. I'll post more about those after I try them out.

Three friends in a reiki group came over today to do a reiki treatment on me, as they have been doing a few times a week since I got diagnosed with cancer. These treatments help to keep me centered and grounded and present in the moment. Between Terri bringing me natural products, Deb making sure to go to all my appointments with me and helping to explain the medical stuff to me, and the reiki treatments, I am learning to accept support from other people. Having people near me who I know care that much about me is helping me to regain some of the sanity that I lost after feeling violated by the doctor who was verbally aggressive, humiliating and openly homophobic. The reiki treatments are helping me to remember that my body is not a traitor. My body does miraculous things every day, like breathe, eat, move, see, create new cells (healthy ones), and feel the loving touch of my partner and pets.

My dad is in Michigan, visiting from Baltimore. He will be singing and playing guitar at Blissfest this weekend, up north. I may drive up there to spend some time bonding with him as father/daughter and as two new cancer patients. Don't know yet.

Today has been a good day so far. I'm trying to focus on the good things in my life again instead of constantly brooding over the cancer, although that does still color much of what I do, think and say, I'm trying not to become my diagnosis.

Thursday, July 12, 2007

Scardy Hat

I got this really cool new hat today. It is black leather with a wide brim. As soon as it arrived, I, of course, put it on my head and proceeded to feed the dogs. Pippin is very skittish of anything new or different including people, and any new object that finds itself into our house, until she gets used to it and can see it as part of the proper order of things. Some of our visitors don't even believe us when we say that we have 3 dogs, not 2. Anyway, I put on this hat and filled their bowls and Pippin wouldn't give me my usual lick on the face as a thank you. Then, she backed away and wouldn't eat until me and my hat left her sight. Any ideas on how to deal with a dog like that besides love her? (She is very lovable and affectionate to Deb and I, but she still hasn't warmed up to Ryan who has lived as the troll in our basement for a month or more!) I am including a picture of her as a puppy. I have to retrieve a more recent one from my camera.

How to Talk Back

Someone e-mailed me at home who has never read a blog before and asked how to write back. I have not looked into blogs before, so this morning, I messed around with it a little as someone who was not the setter upper of the blog. If you want to respond to any of the postings, just click on the word "comment" at the end of the entry and a window will open up for you to blog in back. I know that this person is not the only one that I sent the info out to that isn't familiar with blogging, so I figured I'd post this instead of e-mail her back:).

June 22, 2007 Journal Excerpt- Question of Jugement

My appointment with Dr. B. was terrible and I question whether or not his jugement is sound due to his open hostility toward Deb and me because we are lesbians. He used the excuse of my weight as his reason for not doing a hysterectomy. Either he's just scared because of a bad experience in the past, he's a bad surgern, he has a lack of confidence or is homophobic so much that he would rather castrate me with radiation than to follow usual stage 1 protocol which is surgery.

[more on this subject in another post that I will write later]

I had my CAT scan done of the pelvis and abdomen done on Tuesday. Wednesday, I woke up with a rash on my arms and legs. Now, it is also on my feet and belly and , I think, on my scalp. I believe I'm allergic to the dye that they used.

June 14, 2007 Journal Excerpt- The Diagnosis

Friday I go to see a gyn oncologist. Yesterday, Dr. H. told me that I do have cervical cancer. That did not surprise her so much. What did surprise her was the type, adneocarcinoma, and the fact that she found it not on the surface of my cervix, but on the inside of it. So, if I had had a normal pap and had not been tested for HPV,t hey wouldn't have found the cancer because pap smears check the outside of the cervix, not the inside.

June 1, 2007 Journal Excerpt-WAITING IN FEAR

I'm finding that now, as I wait for the pathology report, I imagine that every small cramp, muscle spasm or unexplained discomfort may be due to cancer eating away my insides. It's kind of amazing, I never realized before, how much pain and discomfort I ignore, but now I'm noticing every unreleased fart and muscle tic.

I'm struggling to stay present in the here and now.

May 3, 2007 Excerpt from Journal-WAITING

I think, perhaps, facing the possibility of cancer (whether it is or isn't), is a chance for me to really live what I preach. I need to learn to live in this moment, now, and in doing so, this will be a perfect moment. I need to let go of my self-pity and fear and embrace the joy and love that I have available to me now. Today. I need to somehow allow myself to accept support from those around me and I need to live life as fully as I can today. I need to stop focusing on my past mistakes and start focusing on the possibilities of the present.

Wednesday, July 11, 2007

First Tatoo

For about 20 years, I have wanted to get a tattoo. Being a professional and amateur procrastinator, of course I have never gotten it done. I always wanted to place my tattoo where I could see it, but cover it as needed and show it the rest of the time.

I thought about the ankle--too painful.
The shoulder--I can't enjoy it except in a mirror.
The breast--what about sagging with age?

So, for 20 years I have debated the location and design of my tattoo.

Today, however, I got not just one, but 3 tattoos. The location was decided for me by a CAT scan machine, a doctor and two technicians. Three small black dots mark the alignment for my radiation treatments which will begin next week. The tats didn't really even hurt. Hmm, where shall I get the next one?