Side effect resolution and a new obsession

I'm eight weeks post chemo(as of yesterday) and I'm still having a few side effects from the treatments. I assumed that once the drugs stopped, the side effects would too. Well, that was just dumb on my part!! Of course it takes awhile for the toxins to leave my system...not to mention the number it did on my bone marrow!! The worst side effect that's still lagging is nausea. It's a little bizarre to be nauseous for no reason, but I'm just riding the wave and hopefully I'll stop barfing at some point! My hair is coming in at a nice pace...although I was hoping for faster growth. Still not sure what color or texture it'll be. That's kind of the fun part, having folks guess what color it it...or will be!

In other news, I'm completely obsessed the "R Family Forum." It's a place where the folks going on the R Family Vacations can post questions, thoughts, ideas or just get to know one another. If you don't know, our little family is booked on the July cruise that will be leaving NYC on July 7th. Originally slated to go to Bermuda, the itinerary has recently changed due to the threats of some homophobic churches in Bermuda. The company made the wise decision to avoid a repeat of their Bahamas experience that frightened many children on their maiden voyage several years ago. We're all very excited about the cruise and know it'll be a fun time for everyone. We're planning on spending at least an extra day in NYC to explore a bit. I promised Sofie we'd go to the Central Park Zoo to see Roy, Silo and Tango. (The two male penguins who helped hatch an egg. In an interesting twist of events, Silo has left Roy for a GIRL penguin!! But it seems that Tango has followed in her parents footsteps and paired up with a girl!)

Weekend chocked full o' fun

This past weekend was the first weekend in awhile that Sofie stayed at the Condo with me. She's been complaining about that fact for too long, but with all that's going on with Debra's health it was easier many times to stay at Debra's with Sofie.

I picked D & S up at RDU late Friday evening, dropped D off at home and Sofie and I continued the 3 miles to my place. She was a little jacked up from napping on the plane, so we compromised by watching a Scooby Doo to settle her down. She had also decided that she wanted to sleep in her tent in her room. I had no objections, so I made a nice cozy bed for her and random animals in her tent. She snuggled in, I read books and went to bed myself. The next morning she woke up after 8a and came in and snuggled. She reported that she couldn't fall asleep in her tent, so she ended up in her bed. Bummer.

For Saturday, we had a play date and picnic planned with Taylin, Emma and Jacob and their moms. Sofie and I started the morning with our regular trip to Biscuitville, then over to Debra's to pick up the picnic lunch. (I had NO food in my house, so Debra made a picnic for the two of us!!) I realized that Sofie and I were dressed really inappropriately for the weather. Shorts, long sleeve tshirts and light jackets. I was *freezing* sitting their talking to the other moms. Sofie didn't seem to bothered. We had a couple of fun hours of play and picnic, then everyone went their separate ways. Sofie and I went grocery shopping, then home to relax and snug in for the rest of the day. Big thunderstorms were on their way!!

Sunday, Sofie would NOT wake up. I think she finally needed to catch-up on lost sleep during her previous days at Disney. She slept so late, we missed church. We took our time and decided we'd go the NC Museum of Life and Science to spend a few hours while it poured outside. We had fun, building with Kapla blocks, looking at snakes, trying every exhibit and just hanging out in general. After the museum, off to Locopops, then home to pack up to head back to Debra's. Taylin came over so her mom's could go to the Duke Women's Basketball Banquet. The girls had fun playing and watching a movie while the thunderstorms continued.

I was glad to have Sofie time and I know that Debra was glad to have alone time. A fun weekend for all!!

Holding it together

It's been awhile since I've written an entry of any substance. I'm finding it difficult to put finger to keyboard to type out my true feelings. I've become overcome with feelings of apathy, sadness, loneliness and exhaustion. Life should start getting back to normal after finishing treatment, right? Well, sort of. Ironically, life can be a little more complicated post treatment. During treatment, you chug along doing whatever it takes to get through each day. You don't think or feel too much because you too busy making sure life goes on as normal. After treatment ends, I should be re-evaluating life. Figuring out what I want to change and what needs to stay the same. I haven't had time for that. I'm too busy worrying about what's going on with Debra and how everything is affecting Sofie.

I've been back to work for almost 2 weeks and I have to say, I'm barely holding it together. Being at work is fine. The days pass pretty quickly because I'm busy with interesting projects. The unfortunate thing was my lack of sleep usually caught up with me by days end. Fortunately, there have been visitors helping Debra with Sofie because I'm trying to get my bearings back while keeping my energy up. I haven't been successful. Hopefully I'll be able to rest more while they're in Florida this coming week.

Sofie has made if very clear that she needs/wants more time with me...specifically at the Condo. We have plans for her to stay with me next weekend, after they return from Disney World. I'm looking forward to it. I miss the one on one time we have.

Two Girls and a Firetruck

Taylin as the firefighter, Sofie as the fire dog!

Re-entry

Monday was my first day at work after about a month absence. I'll be honest, I was NOT looking forward to going back. I was worried how "chemo brain" would effect my work and if I was physically(and probably mentally) ready to go back. All things considered, it wasn't that bad. I went in super early to have some quiet time before the ranks started arriving. Everyone was happy to see me and I was eager to get started on some projects. Everything went well and I'm actually glad to be back, using my brain and interacting with people again. It's nice to be able to talk about something other than Cancer and chemotherapy.

March Madness

Well it's that time of year that many folks gather 'round the TV and watch LOTS of college basketball. Basketball is THE state sport here in NC, but it seems like other parts of the country have the March Madness Factor, too. There have been surprises throughout both the men and women's tournaments. None as big as the surprise realizing my darling daughter loves to watch basketball!! I had no idea. I've taken her to a handful of Duke Women's games over the past two years but never watched a game on TV with her. I just assumed she'd be bored or something. Well much to my joy(and probably my dad's too) she really got into the basketball games on TV last night. Once I explained which team we were pulling for(Duke in white) she really paid attention. Asking questions and uttering, "Oh, man!!" if the other team(Temple) scored. She was *so* into the game. We even let her stay up past her bedtime to watch part of the State vs Baylor game. She told me after Duke won that she kept saying to herself, "Duke is going to win. Duke is going to win." So the fact that they did had a lot to do with that..in her mind. Okay, so she doesn't quite have cause and effect down yet, but I like that she was excited about the game and it's outcome.

Tonight was dinner out night, Sofie's choice. Her choice was Fuddrucker's...big surprise! As we were leaving, I noticed Allison Bales (the 6'7" post player for Duke) waiting for her food. I mentioned to Sofie who she was and that she played for Duke. She wanted to tell her that she saw her play ball last night so she and Debra walked over to talk to her. It was very sweet and Sofie was still talking about it as she and Debra drove off. Very cute. I'll definitely have to take her to more games next year.

Rain, rain, go away...

'Tis a rainy day here in Durham, NC. Well, I guess we're better off than the NE and all their snow. It's just one of those days that lends itself to making one blue...or in my case *very* blue. I've been weepy all day long. I met my dad for breakfast this morning and when he asked how things were, I burst into tears. Can't say I've done that in a long time...maybe ever. He was very sweet and supportive and handled my tears with grace and dignity. After I regained composure, I chatted with him about the trials and tribulations of life these days. It felt nice to have a real chat with him.

After breakfast, I drove back to Durham in the pouring rain and shed a few tears along the way. Not really sure what's going on. I think my emotions are playing catch-up with me. I think that when you're in treatment, there's that need to plow on through. No time for real emotions. Then, after treatments over, your mind catches up with the rest of you and the real emotions start rearing their ugly(or not so) heads. I've definitely noticed that I'm feeling down these days. I feel distant from my friends and really don't care. I'm just tired and feel like curling up under the covers and sleeping the day away. But I can't do that today.

I promised Sofie a night in the condo. She really needed time away from Debra and Debra needed a night alone, so here I am. Feeling blah and trying to be a good mom to a very spunky girl. Video games have been played, dinner has been made and now we're watching "Barnyard"...the most disturbing animated movie to date because ALL the cows(male and female) have udders!!! Very distressing. It makes Sofie laugh...a lot...so that's all that's important today. Her laughter makes me laugh and that's all good. Even on this rainy cold Friday night.

Taking a break...literally

Monday, I noticed my left wrist was aching. I thought, maybe I'd slept wrong so I ignored it...until I couldn't ignore it anymore. Yesterday, I woke up and my wrist was swollen, I couldn't rotate my hand and my arm hurt all the way up to my shoulder. I don't remember banging it or falling, but there was definitely something going on. So, after having my blood drawn for my weekly labs I walked over to the Orthopedics clinic at Duke for advice. I expected they'd tell me to go to the emergency room. Fortunately, lady luck was on my side and the nurse I spoke with got me right in to see the PA on duty. After a thorough exam and x-rays, it was determined that I either have a stress fracture or some serious soft tissue damage. The stress fracture doesn't show up on an x-ray, so the course of treatment is 2 weeks in a removable splint, anti-inflammatory drugs and pain meds as needed. If there's no change, I'll have an MRI that would show the stress fracture. So, what caused this? Possibly the steroids I took throughout my chemotherapy. Oy!

Typing isn't that easy, so I'm taking a short break from blogging. I'll write more when I'm compelled or my wrist stops hurting.

*How* are you two related?

Yesterday, I went with Debra to her doctors appointment. I wanted to hear first hand what the next round of treatment was going to look like. As many of you know, we have the same surgeon. He was at a conference, so Debra was seen by one of the fellows. We've been very open about our past relationship and the fact we have a kid. Our nurse, Teri, is wonderful and supportive, as is Dr Valea. I assumed that we were the talk of the department. Those lesbians that both have cancer, we have to be an unusual situation!! So, I was a little surprised when Dr. Lee, the fellow, came in with a very confused look on her face. She actually said, "I'm very confused. Aren't you (pointing to me) a patient of ours?" She then asked, "Are you two related?" Debra quickly said, "Yes." She went on answering Debra's questions about the treatment change, then stopped again and asked, "How are you two related?" She seemed concerned that she was breaching patient/doctor confidentiality. Not sure what was bugging her, but something was. So, in sync, Debra and I said that we're ex-partners and we have a kid. And I added, "We're *that* couple." She didn't laugh, but Teri did. So, I guess, we're not talked about! You have to admit, we have to be a rarity in the Gyn/Onc world!!

If you read Debra's blog, you know they've changed her treatment. This treatment is more frequent, so I'm sure her body will get tired. I worry how this will be for Sofie. She's been such a trooper through all of this. Even when she's at her brattiest, she always comes back to that wonderful compassionate kid that she is. Sofie continues to let us know that she's looking forward to the time she gets to stay at the condo again. I struggle with this a bit. I struggle with wanting to take care of her and Debra, knowing Debra wants to spend as much time with Sofie as possible(but also knowing she needs a break!) So I will do a balancing act of having Sofie with me and helping with Sofie at Debra's. I just want Debra to have the best opportunity to fight this battle and give her all the support she needs.

Today has been "flu-like symptom" day. The Neulasta increase my white blood count, but while it's doing that, it messes with my bone marrow. I started feeling achy on Monday night coming home from picking B up at the airport. Yesterday was a little worse, but last night I felt as if my mid-section was an accordian stretched too much. I've slept most of the day and popping Tylenol like crazy. I expect I'll feel better by weeks end. Then I'll finally feel like I'm on the road to recovery.

Restless night

No matter how much I tried to meditate, be mindful or just sleep last night, my mind wouldn't stop. I thought my mind might slow down post treatment. It seems to have gotten more cluttered and less focused.

I started on my journey to sleep around 10p last night. I felt exhausted and I had taken some pain medicine for dealing with the body aches I have post chemo. I sat the timer on my TV(as I do often) and felt for sure I'd be asleep by the time Brother's and Sister's and the TV went off. Oh, how wrong I was. At some point, my very tired mind became engaged in the show, so I watched that. My mind raced as I was trying to settle down. *Every* time I turned off the TV and laid there quietly, my mind raced and I just thought/worried about the future.

I continue to work on being mindful and stopping all the head chatter and accepting whatever the future holds. Last night was an example of how difficult this can be for me. I didn't fall asleep until well after 4a. At 8a, I woke up feeling as if I slept all night. No naps today!! I have to stop the spinning mind and focus on life and how wonderful it is. I just finished treatment and need to focus on the greatness of that! I'll add no "buts" to this, just know they continue to creep into my thoughts.

Peace, love and long life for everyone is what I want my mind to be filled with.

Extraordinary Care? Try the ER...NOT!!

Duke University Medical Center (DUMC) has a new add campaign about "Extraordinary Care. Extraordinary People." As a current patient being treated for Cancer, I couldn't agree more. However, as a friend who went with another friend to the ER last night, I couldn't agree less. I let this other friend write about her experience, but know, I was appalled with the service given there. We were there from 6p until 4am!!!

To say I'm exhausted...big understatement!!

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On another note, Snake, our daughter formally known as Sofie, was the cutest snake for Book Character Day at her Elementary School today. She's recently started asking groups, like church and school to call her Snake. Debra jokes it'll be her gang name...oh please don't let that be so!! I'm still amazed that she's soooooooo into snakes, almost 3 years after she acquired Snakey, the snake that began it all!

For today's event she had originally wanted to be Pongo, who she was last year. We encouraged something different and suggested some different characters. Last year, I picked up some books in Minneapolis that were kids books with snake characters. Her favorite is a book entitled, Snake: His Story about a snake that could hear and he foiled some bank robbers by over hearing their conversation! She loves that book and below are pics of her being Snake.


Debra did a great job on the decorations and make-up. Below is a closeup of the shirt front and arms. The back had green scales. I'll try to find a picture of that, too.

Life as I know it ... at 3a March 1st, 2007

Currently, it's 3am. I've had a few hours sleep and now I'm wide awake...steroids will do that to you every time!! I also get contemplative post treatment. It may be the drugs or it may just be the down time I have that allows my head to spin and the thoughts to swirl about. Thinking about life and the future.

Life should be looking up for me. I've just completed a long and winding road of Cancer treatments. The surgery that started out as benign, then THE diagnosis, radiation and chemotherapy all in the midst of Debra wrapping up her own treatment and journey. Or so we thought. This is where life has thrown an unexpected curve ball our way.

So, while I should be feeling extremely happy about the end of my treatment, I'm really starting to feel sad about what's going on with Debra. There are so many unknowns. And all I really want her to do is get better and live a long life raising Sofie and Sofie having two moms. I want to stop crying every time I think about the other option. I want to stop thinking about the other option. I want to be supportive and not selfish. I just want all the fucking cancer to GO AWAY!!!!!

Ah, life as I know it. This is Jamie being bitter about something she has no control over. I'm not losing my mind, just letting the thoughts roll out through my fingertips.

The end of treatment (A 41 year olds perspective)

Today, I had my very last round of chemotherapy. It was touch and go whether I'd have the treatment today because a few of my blood counts were too low. However, Dr. Valea said it was okay since it was my last treatment and he wanted to keep me on schedule. Whew, that was close.

I have to say that the period of time between treatment 5 and 6 were indeed the worst mentally and physically. It was as if my body decided she was tired of all the crap going in my body. The latest reaction was from my Procrit. Edema(swelling) in my hands and feet. I walked in today day and said I was just feeling "puffy." Dr. Valea agreed and said it was water retention from the Procrit and from any other chemotherapy related drug I might be taking!! Teri, my nurse asked today if there were any drugs I *didn't* have a reaction to. I laughed and then asked if there was any correlation between patients who have odd side effects and effectiveness of treatment. She thought it was a good question, but said it can go either way. I was satisfied with that answer...it was coming from a small spot of paranoia since Debras' recurrence!

Debra came to the Treatment room and hung out with me today. Actually, she watched a movie on my laptop, while I slept! (If you haven't rented it, please see Jesus Camp and be prepared to be pissed off at these people who are brainwashing kids.)

My nurses are so wonderful. The picture that will be below when I find the USB cord for my camera,is of my nurse today, Marcella(on the left) and then me in the middle, then my most favorite nurse, Kathy(on the right.) Sofie thinks she looks like Delma. I wonder if all Cancer nurses look alike!! They were very sweet. Kathy gave me a card...she calls me her Lamikins, so on the card she drew a lamb and wrote, "Bah Bah Bye Bye" and other lovely words! And the group gave me(and I suspect many others going through their final treatment and framed photo and quote..."In the depth of winter I finally learned that there was in me an invincible summer. Albert Camus"


So, all in all my final treatment went well. I'm glad their over. Now I can feel better and really help out with Sofie AND Debra. And remember faithful readers, please keep Debra in your prayers.

Love you all for being wherever you are.

The end of treatment (a 6 year olds perspective)

Tomorrow, February 27th, 2007 marks what I expect to become the anniversary date for my last treatment for Cancer. I have to believe that is true. I especially have to believe because of the look on Sofie's face this morning when I told her that I have my last "treatment" tomorrow. She beamed...brighter than I've seen in a long time. Her posture changed, her eyes lit up and then, in typical 6 year old fashion, it became all about her! She gave me a high-five, then said "Yay, I get to stay at your house again!"

Since Debra's recurrence and my chemotherapy overlapped beginning in January, Sofie hasn't gotten as much time at my house as she'd like. For many reason's, it's been easier and more practical for me to help out Debra at her house. For Sofie, my house has become a weekend retreat of sorts. We do fun things because when she's with me, it's Friday night through Sunday afternoon after all! I'm certain she's differentiated the two homes in her mind. For example, she corrects Debra every time she mentions "Jamie's house"..."It's a CONDO mom!" she often exclaims. She even calls it a tree house because I live on the top floor and surrounded by trees where the squirrels frolic and raid the bird feeders. Frequent readers also know Santa brought Sofie her very own video game, so that's a draw. In her mind, the places are very different. However, Debra and I really strive to maintain consistency for her, so many of the basics of life are the same in both homes.

Before my diagnosis, Sofie stayed a bit longer and on a more consistent basis. She was here on school nights. That will all begin again after I get through the next few weeks. She'll start staying with me more, especially during the weeks that Debra has chemotherapy. During all of this, I remind her that the "fun" stuff we do and they way we do things now will be like it has been when she's stayed on school nights. I'm sure we'll have a little struggle but for me, consistency is more important than any struggle she and I will go through. I'm absolutely positive any battle we have now will pale in comparison to when she's 13 and I'm an annoyance just existing.

Hitting a Wall

Well, I've finally succumbed to chemo related fatigue. I've been fighting it for the past two or three treatments. Weekly, since mid January, my nurse calls and tells me my blood levels. A few weeks ago, I started getting shots for low white blood levels which has definitely helped with those levels. She also told me my hemoglobin and hematocrit were down too. However, she left the decision up to me whether I need a shot for that, too. I declined for a few weeks since I was feeling fine. Well, that suddenly changed this week. It was a simple task that pushed me over the edge...taking out my garbage!! I literally walked down 3 flights of stairs, across a parking lot and back again and realized I needed a nap and could barely catch my breath!! I immediately called my nurse, who scheduled my Procrit injection for today. It'll take a week or so before I experience the joys of more oxygen in my red blood cells, but that's fine. I anxiously await feeling better...soon!

I also made the decision to stay out of work until after my last treatment...which is Tuesday...can hear the cheering now?!?!?! Debra's accompanying me to my final appointment to hang out. I'll bring my laptop so she can watch a movie if I'm out of it. I've had such wonderful treatment at Duke, I'm going to miss the nurses but not the drugs coursing through my veins!!

As I've said before...thanks to EVERYone for their support and love and prayers and whatever else you've provided through this time. Please continue whatever you can while we continue with Debra on her journey. Love and hugs to everyone!

One in Three

When you're diagnosed with Cancer your life changes forever. And anyone who challenges that who hasn't been diagnosed or touched by cancer, I beg to differ. Last night, I spent time researching support offerings for kids who have a parent with Cancer. I saw a segment on The View yesterday about a young woman who, as an adult, started a club for kids who have lost a parent to Cancer. Her story was inspiring and made me wonder about other types of support for kids with ill parents. We've already got the ball rolling for Sofie to attend Camp Kesem this summer. Fingers crossed that she gets selected. Camp Kesem is a sleep away camp for kids who have a parent with Cancer. Kesem, by the way, is the Hebrew word for "magic"...and it sounds like this camp is a magical experience for all the kids that attend. I just wonder if we're doing enough for her right now.

This morning, I read a book review in the New York Times Health Section about a book called One in Three. The author was inspired to write it after his father died from Cancer. The title refers to the fact that one in three of us will develop Cancer within our lifetime. I don't know where that fact comes, but it sounds correct to me. The book sounds like it has interesting historical and personal stories around this illness. However, I doubt I'll read it right now. Living it is enough for me at this point.

Oh school, do you forgive me?

When I picked Sofie up from school yesterday, I knew I had the task of undoing something Debra had told her earlier that day. Debra told her that Monday was a holiday(which before the snow day it was) and that there would be fun activities that day. We found out Friday afternoon that Monday was indeed a make-up day.

Sofie and I are driving along and it goes something like this:

Me: "Honey, did they tell you today that you have school on Monday?"

Sofie: Disgusted..."Yes!" "I thought it was a holiday."

Me: "Well, it is, but because of the snow last week, you guys have a make-up day. That's the downside of having snow days!"

Sofie: After pondering a bit..."So the school has to forgive the snow?"

In my chemo state of mind it took me a minute to even get what she had just said and how funny it was. Ah the American English language...I'll guess I'll spend the next several years explaining the nuances of certain words.

A light at the end of the tunnel of goo

As I'm ending week two post treatment, I'm starting to come out from the thick cloud of goo in my head. One of the joys of chemotherapy would be the compromised immune system that comes along with low blood counts. I've had more colds this winter than I've had in the past 5 years combined. I am SO over not being able to breathe through my nose!!

Debra was right, the recovery time from the final treatments takes longer than the initial treatments. Instead of going back to work in week two, I've been home sick with side effects and a head cold. I'm really looking forward to my body returning to it's normal self...well as normal as it will be post surgery/radiation/chemotherapy.

I'm looking forward to being able to really help Debra as well as being there for Sofie. Sofie is missing coming to my house...her video game is here. I think she sees my house as being the non-sick house, even though I'm going through treatments, too. She doesn't get to see me at my worst so I seem relatively healthy in her eyes. All of this is starting to wear thin for all of us. I'm just worried about things getting worse and how we'll all handle that.

No Sharp Knives Allowed

Today, I woke up feeling quite achy. Similar to last time when I felt as if a truck had run over me. This must be the "fluish" side effects from the Neulasta. It sucks. I really wanted to go to ERUUF this morning, but there's not way I'm venturing out of the house feeling this loopy from the drugs. Safety first!!

I don't like how the drugs make me feel. I don't even seem together enough to cook dinner without wobbling all over the place. Don't worry, I try to avoid sharp knives!

I wish this headcold would leave my body. It's horrible. I can't sleep or breathe and I wake up every morning with what Sofie calls "drooly nose." I thought she was exaggerating but she's spot on with that description!

Still trying to work through things and get past the side effects. As Debra said, the bounceback time is longer each treatment. Oy. I just want to be normal again.

Rest, thanks and managing others

Thanks to Laurie being at Debra's taking care of Debra and making sure Sofie is doing well, I've gotten some great rest this week. (Also a big thanks to Maya, Laurie's daughter, for being around over the weekend and beginning of the week, giving Sofie some attention and fun she may not have gotten otherwise.)

I've had a realization this week. I'm in major control mode. Not sure what that's about, but I seem to need to control how other's are around me. I won't go into details, just know that I'm aware of it and trying to work on it.

Today is Debra's birthday. Going to a movie and back to her house for some mysterious cake. I hope it's a fun day for her...she deserves it.

Pain and nausea set in earlier this round. Trying to keep it under wraps. The rest is helping...as are the drugs.

One more to go!!!

Today, I reached a milestone of sorts. I scheduled my last round of chemotherapy today. It was odd an feeling, knowing that I'd just scheduled my last routine visit to Morris Cancer Clinic at Duke...not that I won't be going there at least every three months for the next 3 years for checkups, CT scans, blood work and etc!! Don't get me wrong, I'm looking very forward to ending the poison coursing through my veins and getting back to a semi-normal life.

I arrived at my appointment in a kind of an internal state of panic. They gave me a questionnaire to fill out that I hadn't filled out before. It's given to patients going through chemo or radiation to track symptoms and side effects that are going on. As I perused the list, and checked the boxes, I realized I was kind of freaking out that my cancer might return. So, I spoke with Dr. Valea and Teri, the nurse about what's going on in the area of side effects. Every thing that I described was explained in a different way by Dr. V. The pain I was experiencing is the type of pain I'd have if Cancer recurred, it's normal healing pangs/twinges. He explained what he'd expect, where the pain or difficulties would occur. My blood pressure was high...again related to chemotherapy or actually the steroids I'm taking. We talked about a few other things and I left the appointment feeling much better.

Up to the chemotherapy lab I go. I get a great nurse this time, Bill. Still not as funny as my favorite nurse, Kathy, but he did great. I was in and out without a hitch. I slept soundly during the majority of my 3 hour Taxol treatment and according to Debra and Laurie who were just across the way while Debra got her treatment and another transfusion, I was snoring quite contently! :-)

Tracey arrived as I was finishing the Taxol and starting the Carboplatin (a much shorter drug delivery time!) We chatted and had a good time. We started heading home and I decided I didn't want to be home alone, rather I'd prefer to rest on their couch. Sharon was going to take me home after she got home from work. When she walked in the door, I knew this was going to be a problem and after she was sleeping soundly on the couch I knew it nearing impossible. I quietly crept into another room and called Val. She lives close to Sharon and Tracey. I explained was was going on. The more important issue was I was feeling nauseous and needed to eat. She agreed without hesitation to pick me up, take me to dinner and drop me at home. We had an odd outing at Elmo's...odd because we had weird, not very friendly waitress. It was fun catching up, so that was the good part of the evening.

I continue to be thankful for everyone's love and support for me and Debra and Sofie. We're basking in love, support, prayers and all that stuff. Just know it's greatly appreciated!

The awareness of a 6 year old

Life continues to be crazy, but it seems to be settling down a bit. This past Friday, I brought all my things back to my condo that had accumulated from my 2 plus week stay at Debra's. It's amazing how much you stuff builds up when you just pick up items here and there! Debra is feeling better, slowly.

Sofie continues to become more aware of what's happening. Just this past Saturday evening I went over to Debra's to help out before I drove to the airport to pick up Laurie and Maya (Debra's helpers for the week.) I walked in during the middle of a little tiff between Debra and Sofie. It's hard to walk in and be supportive of both of them, but I really try. I took Sofie into her room and we chatted about things. She gets very defensive about things so I try to be sensitive. I listened to her with open ears. As gently, yet firmly as possible, I start talking to her about trying to be a little less argumentative and more cooperative with Mama Debra. I continued to explain that Mama Debra gets tired and a little crabby because of the treatments and she's taking the treatments so she'll get better. Sofie's response, "Mama Debra's not going to get better." Gulp. I actually burst into tears trying to explain that's not necessarily true. Unfortunately, I don't remember what I told her. I'll just have to trust that whatever I said was the right thing. Trusting myself...I'm having to do that so much more these days.

I'm facing my next to last chemotherapy tomorrow. I'm SO looking forwarding to this ending. Returning to a normal life looks very appealing to me...although my life will never be the normal that existed prior to Cancer. Life will be whatever it is...I just want chemo to be done!

Tired and a little on edge

It seems like I haven't gotten the rest I've needed over the past few weeks and it's starting to show. I feel myself getting rundown and fighting off a cold again. Over the weekend I felt energetic like I normally do going into my 3rd week post chemo. However, it's starting to change. Is it the cumulative chemo or is it just over doing it?

I've been lectured by several friends...okay, not lectured, but it's been highly suggested that I need to take care of myself, even if that means not taking care of Debra and/or Sofie. That's a pretty hard thing for me to do, even when I know it's true. It's just that I wasn't the one who almost died last week due to pulmonary emoboli! I was the one who took care of Sofie and made sure Debra had what she needed in the hospital. I spent time with her each day so she wouldn't be lonely in the hospital and enjoyed doing that.

I'm just really tired and starting to get cranky. I have an earache and it feels like my head is going to pop off. I'm staying at Debra's to help out until the weekend. Unfortunately, I'm feeling more in the way than anything else. I also had things scheduled 3 out of the 5 nights this week, so how helpful am I really? Just mulling it all over.

The question I've most dreaded

This morning Sofie woke up wanting to cuddle. I could see the pensive look on her face as she lay there sucking her thumb and stroking her face with her blankie. "Mommy, are all your bumps gone?" (Bumps is how we've been describing the Cancer to her) "Yes, honey. The surgery I had this past summer removed all of my bumps. The treatment I'm doing now is just extra to make sure all the bumps are gone." Silence that seemed like years, then the bombshell. "Mommy, will the bumps make Mama Debra die?" My mind was racing. Debra and I hadn't really discussed this yet. Well, we've discussed it, but we talked mostly about how Jane, Sofie's therapist, could help us explain this to her. So here it was and I had to make a split second decision. I mustered all the courage I could and said, "Well, if the bumps keep getting bigger, then yes, Mommy Debra might die. But that's why she's taking more medicine, to make sure the bumps don't get bigger." More thoughtful gazing from Sofie. I asked if anyone had said something like that to her? She said, no, she thought it up herself. I have no idea if I handled this correctly. What I do know is I didn't want to lie to her. This will be only the first of many discussions to come.

Emotional Wreck

Well, I can say I'm a total wreck right now. Mostly it's emotional, with a little physical thrown in for good measure. Debra was admitted to the hospital late last night. She's been having trouble breathing, so our primary care physician made the call yesterday of having Debra go to the Emergency Room. Debra was going to try to do this by herself, but Dr. Marum suggested otherwise. Our dear friend Tracey stepped in and took Debra to Duke's ER, while I was in my motherly role of taking care of Ms. Sofie. Another friend, Betty, stepped in when Tracey had to work and stayed the course until Debra was checked into the hospital.

Dr. Marum has become our hero of sorts. She's the one who initially found the mass on Debra's ovary. I applaud her tenacity, even when Debra tried to convince her it was just a urinary tract infection!! Once again she made the right call. Debra's shortness of breath was being caused by pulmonary emboli. They're currently giving her blood thinner's to allow the clots to reabsorb.

Personally, I'm having a hard time holding it together. It's all very scary for me. Last night, I was trying not to cry in front of Sofie. While she was cuddling with me, she noticed "sweat" on my face. I told her it wasn't sweat, but tears. I told her I had been crying because I was a little worried about Mama Debra. And in that very sweet, matter of fact way that only a 6 year old can be, she said, "Mama Debra will be okay and it's okay if you cry."

Against the advice of a few friends, I'm taking Sofie to see Debra in the hospital after school today. Debra and I feel in our guts that we need to de-stigmatize all that's going on for Sofie. It may be the wrong move, but my instinct tells me it's not. She has a lot of questions so we want to be as open as possible with her.

This is Chemo...

For those of you who've never seen it, this is chemo:


Looks pretty innocuous, eh?

Exhaustion...and pushing thru

It's been a long, hard week for me. As noted in my previous post, this round of chemo didn't go as smoothly as past treatments. Little did I know that chemo day would be the first of 3 visits to Clinic 2A this week.

All my blood counts were down last week, so visit 2 was so I could take a shot of Neulasta. This is a drug to make sure the WBC doesn't tank before my next treatment. Apparently, this will allow my body to create more white blood cells. Unfortunately, the side effects are bone pain and flu-like symptoms. Great. On top of the joint pain that goes along with chemo, now I get to experience bone pain and flu-like symptoms!! I don't have time for that this week.

Visit number 3 was with Debra. She had her port-o-cath put in on Friday, then immediately after that, she had a transfusion. The nurses in the clinic were surprised to see me again. It was interesting being in the other chair. I was glad Debra got to meet my favorite nurse and we got to smirk about the nurse that makes her skin crawl! We watched Oprah, listened to a 90 year old patient tell funny stories and socialized with the nurses in clinic 2A, all the while iron rich blood dripped through the newly placed port. I hope the effects of the transfusion work and Debra gets her energy back.

I'm feeling the effects this time. Still fighting off some sort of cold, my body aches more than usual. I may have overdone it this past week. I don't regret doing anything I did, I just know I probably should have taken things a bit slower. Normally, I'm back at work today. It will be a few days before I'm up for that. I woke up this morning feeling as if I'd been hit by a truck. (Must be that "bone pain" they mentioned!!)

My mind is a bit disjointed and writing this entry has been the most taxing thing I've done today. Just wanted to update this blog. I'll try to be back to my witty self soon. In the meanwhile, thanks to everyone for helping the family unit out.

Round 4, down...with a hitch or two!

Yesterday was round 4 of 6 for my chemotherapy. The day usually goes fairly uneventful. This treatment had *doom* written on it from the time I had results of my last blood draw!

First of all, a BIG "Shout Out" to Angela, for staying above and beyond any duty and to Sharon for coming in to relieve Angela from the most boring, longest day at Duke known to humans(well at least this human.)

Apparently Power Ports (the brand of port-o-cath I have) have some issues. One issue being that a clot of sorts can cause blood not to flow properly through the tube (or something like that.) Because of this situation with the Port, I was at Duke from 8a until 630p!! Loooooooooonnnnnnnnnggggggg day. Filled with frustrations. Fortunately there was one Nurse who was persistent and seemed to be a miracle worker with ports. After two injections of a clot buster, various body positions (one that included putting me on my head in my bed) and lots of coughing and head turning, Nurse Anita had one last trick up her sleeve. Sitting up, bending forward as far as I could seemed to be the thing that freed that damn clot! If that hadn't worked, chemo would have been delivered through an IV and I would have had to have radiology investigate the port. The IV would have made Jamie a very unhappy puppy.

Chemo finally went off without another hitch and I left with Sharon. We delivered some stuff to Debra's and hung out a bit checking up on her and Ms. Sofie. After that visit, Sharon and went to Satifactions for some good food. We amused ourselves by talking about Basketball! We joked that if the ACC women's teams weren't as good as they were this year, we'd be having meaningful conversation! It was nice to have a conversation that didn't involve Cancer, mortality or anything along that line.

Woke up today with a slight stomach ache. But all seems well. Thanks everyone for the love, support, prayers you're sending to me, Debra and Sofie. It's all very much appreciated...even if we forget to say so.

Love to everyone.

Taking Care

This week has been a challenge on so many levels. I've already written about what's going on with Debra, however, I haven't updated you all on my health. I'm exhausted. Mentally and physically.

Early this week I developed a cough that quickly moved to my chest. (Oh, the joys of a compromised immune system!!) I called my primary care physician and saw her on Thursday. I was a little concerned about this because I'm supposed to have chemo next week. If my white blood counts are too low, they will not do the chemo. My doc took no chances and she's treating me for bronchitis with an antibiotic. Glad she did because as I suspected, Friday I received a call from my nurse at Duke. She told me my white count, red count and ANC (absolute neutrophil count) are all low. Tuesday, they'll do another CBC and if my counts have rebounded(which I suspect will happen)I will receive chemotherapy #4. Otherwise, they'll push it back a week.

This weekend, I'm tasked with taking it easy and taking care of myself. That's hard to do sometimes. For instance today was the Women's Basketball rematch of the year. The Maryland Terrapins were playing the Duke Blue Devils. I've become quite fond of the Blue Devils while living here in Durham. I've been a season ticket holder for a couple of years. It's a joy to watch women athletes at their level. I had to go to the game!! So, I rested last night, slept in this morning and headed out to the game with friends. I coughed and sucked on Ricola's the entire game while enjoying the energy and excitement of Cameron Indoor Stadium. It was contagious. The game was excellent. I did overdo it a bit. Now, I'm home for the evening and plan to have a low key tomorrow, as well.

Taking care of myself is something I find hard to do. I'm kind of a "push on thru" kind of girl. Luckily, I have people watching my back and making sure I get enough rest and recharging.

Aloneness of Cancer

Below is part of something I want to expand on. Maybe submit for publication somewhere, maybe not. I wasn't going to put it on my blog, but I decided I would share some of what I write offline, away from this blog. I wrote this just after my last treatment, when the side effects were at their worst. It still needs much expansion and work.

In many ways, being treated for Cancer allows you to ask for help like you never have before, or create a community of friends you never thought you had. It can also feel like the absolute loneliest time in your life.

I've felt lonely before. I'm an only child, so I grew up understanding and accepting lonely. Loneliness is as comfortable as that blue worn sweatshirt with the greasy spots center chest. This feels different.

The world continues to whir about as the dripping of medical poison courses through your veins. Moods change, body parts hurt, nausea seeps in and vision is disturbed. Friends step in, loving and taking care of you. Intentions are pure and true. Aloneness still creeps past, creating a chasm the love and kindness leapt over.

Philosophically, I agree we all need time alone for growth, rejuvenation, regeneration and rest. However, past that analytical side of me, alone time can hurt. It's a pain, so numbing that the tingles aggravate the tapping on the keyboard as I write this piece.

Next Steps

Yesterday, I accompanied Debra to her appointment with our Oncologist and her first round of the next phase in treatment. We arrived at the appointment with fears beyond comparison to any other. While thinking about mortality and the next steps, we talked about family vacations to take within the next few years. We really want Sofie to see South Africa. A place that touched Debra and me in ways that is close to spiritual in nature. We'll tackle that trip next year, when Sofie's a little older and able to handle the long flights. We'll plan something for this summer. Just not sure what that is at this point.

Reality started washing over us once our Oncologist (Dr. Valea) and his wonderful nurse (Teri) stepped into the examination room. Debra asks the hard questions. Bottom-line? Quality of Life? There are no set answers for those questions. However, Dr. Valea is a huge proponent of "quality of life" issues. That fact comforted me in some strange way.

What happened? Why did she have a recurrence? Well, Debra is in the 20% of the population that are "primary non-responders" to chemotherapy. So, the next step is to try to find a drug she WILL respond to! Doxil is *the* drug of choice in recurrent Ovarian Cancer. It has weird side effects, but nothing like the previous round. Fingers crossed tightly that she responds to this treatment. Unfortunately, we have to wait a few months to know that answer. This is a slow acting drug. Patience is a virtue.

What's come up for me in all of this isn't my own mortality (which most people think would be the issue for me.) I can't even think of dying! Actually the fact that I have to get and stay healthy weighs heavy on my mind. More exercise, better food, less stress and generally a positive outlook on life...no matter what. If you're a presence in my life, please gently (or not so gently) remind me to Move more, eat less (and better.) I need all the encouragement you can muster.

For the time being, please remember our little "family" in your prayers (or whatever you do.) We accept all modes of healing thoughts.

Facing an Uncertain Future

This week has been challenging. For me, I'm still battling nausea. The drug that worked best, also caused very blurry vision. If this were the worst of life, that would be okay. Unfortunately, life has thrown another curve ball.

I'll cut straight to the point...Debra's Cancer is back. She has lesions on her liver. She'll post on her own blog, which I link to under the "Of Interest to the Complex One" heading over in the left column of this blog. I'll write about it from my perspective only.

To be honest, I'm freaking out a little. I've run a gamut of emotions. I've cried buckets this week. While visiting the darkest corners of my mind, I realize if anyone can beat this, it's Debra. Currently, I'm sitting in my numb place. Sofie's with me this weekend, so I need that numbness to keep pushing through.

I'm sure I'll write more about this in the coming weeks, months and hopefully years. In the meanwhile, if you pray, please include Debra in those prayers.

Happy? New Year

I don't even remember where I was last New Year's Day. (Well, actually I do, but I choose to completely block that chapter of my life.) Would I switch places today? Not on your life. It's been a long strange trip this year, but not one I'd ever trade in for something better or different.

I had a fun day with friends. Saw "Charlotte's Web" and had a healthy dinner with Susan, Joy and the kids. Quiet evening at home, writing and listening to NPR. Bizarre dreams last night. Woke up cranky and still with vision problems. Feeling better though.

Just glad the New Year has begun. Hope it's everything you want it to be.

Struggles

Today is a bad chemo day, probably the worst so far. The visual disturbance from the drug is freaking me out. My energy is low. I feel completely out of it, kind of loopy. I'm cold, then hot. Sweaty, then clammy. You name it, I've been there today. I'm being horrible company with friends and just need to sleep. I feel like screaming, unfortunately, I don't have the energy to do that!!

Must nap now.

Santa Fe Snow

My friend Carolyn has relocated (permanantly) to Santa Fe, NM. I checked in with her yesterday to see what it was like to live in snow again. Her response, "Effin Great!!"

Here are some cool photos of the process:

Chairs before



Chairs after



Cat before



Cat after...just kidding!

Blindness trumps sleep

Well, this royally sucks. The blindness causing drug was also the drug that allowed me to sleep through the steroids!! Here is is, 3:09AM and I'm wide awake. I've been cleaning my room and throwing away stuff. I'm just bored with that, so now I'll complain about it online! My ankles are hurting, so I can't really stand around doing cleaning. OY OY OY!!!

Whew, that felt better. Nah, not really, but at least I'm telling you all how it really is with me right now. Being honest!

Round 3 gone, 3 more to go!!!

Well, I have to say, this round has been the most interesting so far. My dear friend Cindy accompanied me on this trip. As I've said before, I worry about entertaining my friends while I'm having chemo. I think they'll get bored. Everyone tells me to hush and that they're here for ME, not the other way around!! Okay Okay, I get it. I am loved. :-)

I knew Cindy would be okay because they keep a HUGE jigsaw puzzle going out in the lobby of the chemo area. While I was asleep, I think she got a good fix of jigsawing.

This go round, lots of things changed. My premeds(what I take just before chemo) and some post meds changed. Nausea has been my side effect of choice, so they really brought in the big drugs for that. Well, I'm happy to report, the nausea is nonexistent. Unfortunately, one of the side effects of one of the anti-nausea drugs has been a blindness of sorts. Not complete blindness, but definitely bad enough vision that I shouldn't have been out driving last night!! It's as if I'm not wearing my glasses, except for close up things. Not good!!

I called Delma, my friend and resident Cancer nurse. She suggested I stop taking one of the drugs that I had been prescribed. It apparently causese some weird neurological side effects. I'm happy to report that vision is almost back to normal!!

Debra called to congratulate me on the half way mark and encourage me that it's all down hill from here. I certainly hope so.

It's wonderful to have such love and support all around. Friends driving me places, picking up drugs, scooping cat litter...you name it, I have support for it! I do continue to feel loved.

Holiday festivities and more

I spent the night of Christmas at a Jewish Lesbian potluck. At first, I thought I'd be the only non-Jew there. Wasn't the case at all. It was about a 50/50 ratio. Didn't really matter anyway. It was fun hanging out, meeting new people and getting to know my new friend Val even better. The food was good, conversations were lively. Once everyone left, we played Jenga with another friend and her daughter. By the end, we were doubling the height of the blocks before they came crashing down. Very fun.

I really enjoy meeting new people that I think have long term possibilities for friendship. That's definitely the way I feel about my more recent meetings. At my age, you don't often add friends to your circle, but this feels differently.

Tomorrow is round 3 of chemo...wonder what's in store for this go around?!?!

Christmas, Part 2

After leaving mom's, I headed NE(only slightly) to Stokesdale to help Daddy celebrate his 62nd birthday. I got there just in time for him to finish frying his turkey, grab some lunch and take a nap before the birthday festivities.

Daddy's birthday gathering/pre-Christmas festivities were celebrated at my step-mom's ex-husband's house. Yep, you read that right. Our family is a forgive and forget kind of family. When that first rolls off my tongue, it sounds odd, but it's kind of the way it should be. Debra and I are following along in those footsteps, therefore making Sofie's life easier. It works for everyone!

I won't go into a lot of the birthday festivities, because, let's just say, there are differing opinions about many topics that make me uncomfortable there. I just hang out and move from room to room to avoid any confrontational subject that occurs. The thing that amazed me most...they smoke...in their HOUSE!!! When we got back to my dad's, I quickly put everything I was wearing into a plastic trash bag and sealed that puppy up!

Next morning, Daddy, Shirley and I opened gifts and went to Huddle House for breakfast. This place is more redneck than Waffle House, something I didn't think possible. After waiting an hour for our food, we ate a mediocre meal and headed back to there place. I jumped in my car and started the hellish trip home in the pouring rain.

Got home in one piece and started my first meal in my newly acquired crock pot...Vegetarian Chili. Took it to a potluck that will be written about in my next posting!

Christmas, Part 1

Being that I am a only child from a divorced family, I often split time between families over the holidays. (That is unless I'm boycotting the holidaze and go see no one!)

Part 1, section A involved Christmas with Tracey and Sharon on a hectic, rainy Friday afternoon. Each respective unit was feverishly packing, running errands and planning our departure time for our Interstate drives. Initially we both were going to leave Friday afternoon, but as the day went on it became apparent a Saturday Morning departure was in our futures. We shared loving, thoughtful gifts. As some of you know already, I got a crock pot from Debra and Sofie for Christmas(per my request!) Sharon and Tracey must have known this, for present #1 was 101 Thing To Do With A Slow Cooker. The second part was the creme on the pot...they got all the dry ingredients for THREE of the recipes in the book! Sharon figured that if I had the ingredients, I'd have to use the crock pot. She was right, I used them Monday for a potluck I attended.(More on that in a later entry) Sharon, being the good friend that she is, also bought a cribbage board for me...unfortunately, being the absent-minded friend I am, I forgot to tell her I bought one already!

Part 1, section B involves spending time with my mom, a cousin, Maw Maw Lamkin(that's Grandma for the Southern challenged) and a slew of Aunt's(again, "ant", not "ahnt"!!) Also an impromptu stop by the daughter of a childhood friend of my mom's.

I awoke early on Saturday, began doing chores, packing up the car and heading South for Charlotte. I planned to stop at the Pilot Truck Stop/Gas Station on exit 152 on I85/I40. (This is where my dad's job has him bringing gas/fuel from Greensboro to this gas station ONLY about 4 times a day.) I knew Saturday morning was one of his days on, so I stopped, called him and found out he was 20 minutes away. I decided that even though it might put a crimp in my day with Mom, I'd stay and have breakfast with my Daddy. Boy, was he a big spender( we joked about this all weekend, so this not a dig at my dad by any means!!) I got free coffee, since he works for the company and we shared a 2 for $2 at the attached McDonald's. So he laid down a whopping &1.07 on his only child! And I love him for it. We chatted, caught up a bit. He rubbed my bald head and said the pictures didn't do it justice and that I look much better in person. His way of a compliment. I felt the time crunch approaching, hugged him and bid adieu.

I was on the road to my mom's house and my cell rings, "Where are you?!? It's 10:30!!" "Uh, on your road, turning into your driveway in moments" I guess my mom had reason since I told her I'd leave Durham at 6a...which I didn't do. Then I was waylaid at exit 152!! I arrived and within 20 minutes my cousin stopped by. We visited. She said she preferred the hat to my bald head. Uh, not your head, not your life and you try wearing a hat 24/7 and see how you like it!! But I digress. After her departure we headed over to Maw Maw Lamkin's house(yes, this the mother of my father who is no longer married to my mother. Trust me, this only gets better in my next installment!!)

We arrive at Maw Maw's house and I immediately smell a fresh pot of her famous Russian Tea! (I had called her the day before requesting it...and the recipe.) I gave her a huge Jamie hug, where she comes to just below my armpit. She sent us to the living room so she could call my aunts to let them know I was there. 2 of the 4 of them showed up. One was in the middle of something and the other didn't come because we were stopping by her house after leaving Maw Maw's.

I admit, I don't visit my grandma often enough. I love her to bits and she's the only grandparent remaining...although I've only been down to 1 grandparent for 5 years. I feel grateful that I had Maw Maw Bess live to 99 and Paw Paw Lamkin live to 83. (If you look at my bald photos, you can see what my Paw Paw looked like...there's a lot of him in me...at least being bald!) I'm going to try to visit her more often this year. I want Sofie to know and remember her, so it's important that she be around her more often.

After visiting with Maw Maw and my aunt's Kathy and Julia, Mom and I headed over to my most favorite aunt's house...Linda. Linda is a free spirit. She and I come from the same family and both created our own set of beliefs that were beyond the families. We listen to NPR, can chat about crystals and healing and other sorts of things I can't imagine talking about with most of my family. She recently moved back from CO, after being gone for at least 25-30 years. She bought a cute mill house in Cramerton(a little mill village in Gaston County) and has proceeded to gut it. When she finishes, it will be an incredibly cute house...and just what she needs!

While visiting her, we discussed planning a family reunion for the summer. Maw Maw's brother and sister-in-law live in Hayesville, NC and that's the area my dad was born and my grandparents were raised. My people are there in the beautiful mountains. Again, I'd like Sofie to meet them before they die and I'd love to see everyone in the same place, that's neutral and won't cause strife for any family drama! I'll do part of the planning, planting the seed and see how it blooms.

After leaving Linda's and heading back to Charlotte, we drove by the house of the daughter of one of my mom's best childhood friends. They lost the Husband/Dad a few days after Christmas last year to Prostate Cancer. They were out raking leaves, spending time together and really just taking it one day at a time until the Anniversary. Missy, the daughter, was very close to her dad...much like me. She's a lesbian, like me, too. Unlike me, her dad didn't speak to her for a while after she came out. That's always sad to me. I'm glad it all worked out and their relationship became what it was before the coming out. I'm glad we stopped by. It was great to see them and send them loving energy to have a better year.

Back to mom's we head for a wonderful home cooked meal and an afternoon/evening of watching cheesy Christmas movies on Lifetime. I went to bed on the early side, slept fairly well, until the heat came on and baked me out of the bed. Got up, had breakfast and headed to Christmas, Part 2 as my mom and her husband headed off to Christmas Eve service at her church.

On writing and "The Story"

Today, as I rushed out to grab lunch, I was fortunate enough to catch today's airing of "The Story", a locally produced but nationally syndicated show on NPR. The guest and subsequent discussion hit home with me. I wrote in saying so, which is something I never do.

Here's what I wrote:

What a pleasure it is to hear Dick Gordon so caringly draw the stories out of everyday people. All stories deserve to be heard, however, often folks don't quite know how or what to tell. Mr Gordon brings mastery and sincerity to his profession. The amount of tears, laughter and ontemplative sighs that the stories evoke are awe inspiring.

I want to *thank* him and especially the guests who are professional writers for evoking ideas and encouraging this particular writer who struggles daily with telling her story...or those stories surrounding her! The show today discussing Sarah Ruhl's obvious love for her craft literally rubbed off on me, inspiring me to write in and to continue my daily writing, however painful it is.

One idea came to mind for a potential story. Blogs. Weblogs are used in a multitude of ways. Often very personal stories are out there for the world to see and read. Some blogs develop a "following", but often those are political or socially aware minded folks who have an agenda. The blogs I love to read are those who are human interest in nature. Humans seem to have a need to tell stories, however mundane they may seem. The ironic part is...they're not mundane. Stories have a way of reinforcing our own existence, trials and tribulations.

Initially, I resisted writing my own blog, fearing boredom from the webworld. After being diagnosed and starting treatment for Cancer, I decided to make my "private" blog available to friends and family. Months ago, I started an anonymous blog that I used to vent, process and write about a personal relationship I had. That blog is still out there, but I don't write on it anymore. I've moved on, creating another blog that doesn't diss anyone (except ME occasionally!)

Blogs are the newish face of human stories. I have fanciful ideas that my 6yo daughter will one day be searching the Internet (or whatever it'll be called then) when she's a teen or older and stumble upon my blog or her other mom's blog. Seeing just how much she meant to us at that point in her life when she had two bald moms who were both going through treatment for Cancer.

Just a bit of my story. Wishing for continued success for "The Story" in the coming years.

Personally, I don't care if they respond or even read the letter. Just telling my friends about it is enough for me. If you've haven't had a chance to hear this show, go online, download it to your iPod, listen however you can. It's worth it.

Parenting and Chemo

The original title idea was "Bad Parenting and Chemo," but I decided I'm not being a bad parent intentionally...just a parent who's going through chemotherapy and does bad things occasionally.

The bad started when I picked Sofie up from school yesterday. All the kids in her group were lined up at the door, because we know how well schools love children in lines!! I noticed some of the kids had paper masks. Before I even got a chance to ask Sofie where her mask was, three different children yell out, "Sofie's mom...uh, all the good kids got masks and the bad kids didn't. Ask Sofie why she doesn't have a mask." (I swear I heard a kid think, nah, nah, NA nah nah!) Before it was out of my mouth, I asked about it...regretting it as the words came falling out. (I honestly didn't care about some way they chose to differentiate "good" vs "bad" kids!) I was pleasantly surprised when one of the boys actually said, "I think Sofie is not bad...she is wonderful." How cute. Sofie didn't like the confrontation and of course denied any wrong doing. I dropped it...until we got to Debra's. My nosiness got in the way. Only curious about what the "crime" was that prevented her from getting a mask, I pushed a little. Explaining we weren't mad, just curious. It didn't fly. I still have no idea, and really don't care.

We had stopped by Debra's to check on her, help her out with any heavy lifting and take her to get cat litter for the extended absence. Sofie was a little bummed because she had visions of video games nestled in her head. Luckily, the neighbor kids were jumping on Sofie's trampoline, causing temporary amnesia from any other things.

I went inside and quickly hit a wall. I was so incredibly tired and just wanted to sleep. (It seriously happens that quickly!!) We decided I'd get the litter later and Sofie and I head home for an evening of pizza making, video gaming and all the other activities associated with being six.

We had fun making our very own pepperoni pizzas, playing games and eating dinner. Then I crashed...in a serious way. I couldn't hold my eyes open anymore and it was only 7PM. Instead of bathing, reading and doing other parental duties, I pandered to my own needs. (Here's where the bad parenting begins...with creativity of course.) Sofie wanted to watch a movie, which usually doesn't happen on a school night. I saw an opportunity and ran like the wind. We played "movie theatre" using the TV in my bedroom as the screen. We got cozy in PJ's after brushing teeth(one parenting duty accomplished) and snugged down in my bed. We proceeded to watch the movie and I quickly fell asleep. When the movie ended, Sofie woke me up saying, "I want to watch the extras!!" ABsolutely NOT! Off went the TV, I rubbed her back and tummy and Ms Sofie was asleep(yes, in my bed) in 5 minutes.

To pry her out of bed this morning, I gave her a special treat. A little time with her video game since she wasn't going to be her for awhile. I'm glad I did. The Shrek game uses an actual clock face to teach telling time!! She did well, once I explained what it all meant. So we had a bit of learning this morning after a night of bad parenting.

Off to school we went for her last day before the break. I was feeling a little guilty about last night, especially that Debra now has to bathe her, but I know in my heart it could have gotten worse if I didn't play it out the way I did. The skills of parenting are still enriching me daily and giving in sometimes is skill most parents I know utilize.

Suspended Disbelief

I love that time in a child's life where the lines of fact and fiction blur. Santa is a prime example. The trust and awe that Sofie is experiencing right now is incredible to observe.

On Sunday, Sofie came to stay with me for a few days. It's a mixed bag of reasons, but one was so we could do Christmas before she and Debra head to California for the holidaze. After a very hectic weekend of parties and festivities, Sofie arrived at my house ready to open more presents. "Santa" had gotten her something that I knew she'd want to play with for longer than we had that evening, so I diverted her attention to the boring presents(clothes, books, art supplies) I had gotten her. I did, however, point to the pile of presents wrapped differently. I explained that because he knew she was going to be out of town for Christmas Eve, Santa sent a couple of his elves by with a few presents for her. I can't begin to describe how wide her eyes and mouth became. Ah, the joys of suspended disbelief!

We waited until last night when I thought we'd have a bit more time for her to play to open Santa's gifts. Being in the know, I directed the order of opening. First her stocking with a Scooby Doo cup and straw, her very own Chapstick and a bit of candy. She was pleased but quickly tore through the next box...the BIG ticket item! Her very own video game! That's what she kept saying over and over..."my very *own* video game!!" Her final two gifts from Santa were cartridges for her "video game"...Scooby Doo(math, reading, logic, spelling) and Shrek (more of the same.) Ah the sneakiness of Santa! A learning tool that's FUN?!?!

This morning, I explained that kids at school may not believe her when she tells them that Santa visited her already. I advised her to stick to her guns and assure them that he knows ALL and really wanted to make sure that she got her presents on time. When I dropped her off at school, she ran over to one of friends proudly exclaiming, "Santa came and I have my own video game now!!" I saw a bit of disbelief in the other child's eyes, but Sofie explained and the disbelief washed away. All was well with the world. I'm worried that a 3rd grader will burst her little Santa bubble today, but I feel confident that she will hold to the truth as she knows that Santa knows and sees everything.

Raw nerves

My skin seems to be thinner than normal these days. Emotions seem to be particularly raw this year, so I'm guessing the chemo is adding a layer that I wasn't anticipating. Several times over the past few weeks, I've wanted to flee situations where I've felt I was being, for lack of a better word, attacked. That's a very strong word and it's not really what I mean, but in that moment, it's how I've felt. I admit, it's hard for me to write this, but I'm trying to be true to what's happening and true to the the blog.

I'm not one to really enjoy this time of year. There are so many long standing reasons I tend to get in a mood around the holidays. Unfortunately, things seem particularly sensitive this year. Is it chemo related or just the Christmas blahs? That, I cannot tell you because it's unclear. Just know that I may get my feelings hurt without you even knowing it. 'Tis that time of year. Just know, I'm trying not to take everything personally.

Steroids ROCK!!!

As my last post, you know I was dealing with residual nausea from the last chemo. No more, thanks to a power pack, three day run of steroids. Another great side effect of steroids is major major major energy. I could move a mountain today, if I wanted to.

So, I'm spending the rest of my steroid induced power blast day cleaning and organizing and wrapping presents. Don't know how much longer this will last, so must utilize the power NOW!

Chemo sucks...well, currently it does

You asked how I was really doing. Ask and ye shall receive.

Well, I've been doing pretty well with treatments. The pain is being managed, but oh, the nausea! I've been slightly nauseous since treatment last week, with a short break over the weekend. I stopped taking the big anti-nausea drugs and it's come back with a vengeance. Yesterday, my nurse at Duke called in THREE prescriptions. Of course one of the meds is a steroid, so I'll want to eat like a horse. OY!! I feel like my body should be rattling with all the pills I'm taking.

At this point, I just have to say how fortunate I am that I have good health insurance. There are a few benefits to working in corporate America. It makes me take pause and wonder, how do people without insurance handle this financially? How about a national health plan, Georgie Boy?

Honestly... I'm doing OK!!

Several friends have emailed me recently to ask how I'm really doing. I made this blog public, just so people could keep up and know how I'm doing and to avoid typing the same stories over and over again.

Many seem to doubt that I'm really sharing the truth. I'm posting to assure you that I am sharing most of how I feel. I even posted the fainting episode. If that's not sharing, I don't know what is!!

I will share more about the post chemo week. Maybe that'll satisfy the need to know that I'm not *always* doing well.

This round of chemo has been, well, odd. I did great the first 48 hours post treatment. And that was without any medications. I did have a weird stomach thing happen. Those who know me well probably aren't surprised that my stomach acted up. My nurse changed my nausea medication and that helped tremendously. You know about the passing out incident, that was just stupidity on my part. Now I'm dealing with hives. So, in a nutshell, I'm not perfect, but I'm doing OK. I'm back at work, trying to concentrate enough to make it through a days work. Friends are checking in and that's nice. I get random IM's from friends allover and that makes me smile. So for those who are concerned, I hope this posting assures you that, all things considered, I'm doing A-OK.

Please take with food

What happens when you take ALL your medications, don't eat breakfast and rush off to church? Well, if you're me, you pass out. It clearly states on one of my pain meds, "TAKE WITH FOOD." I love to buck authority...not really...I just wasn't thinking.

I was really enjoying Don's sermon on "'Tis better to give than recieve"...unfortunately, I don't remember much about yesterday's service. I think I was pretty out of it before I even sat down. Definitely not feeling myself. All I know is just before the offeratory, I thought I was having a hot flash. I looked over at Debra and she said, "It'll pass." Well, it didn't but I certainly did! Not dramatically, mind you. Just simply laying down on the pew. I did have this quick thought of needing to get out of the church because I was too hot. Thankfully, I didn't!! After the escape thought, I just went out. I woke up with approximately 20 smiling/concerned faces looking down at me. My head was in as strangers hands and they were asking questions of me. "Where was I?" "Did I eat breakfast?" Apparently a couple of people called 911. The paramedics/fire people arrived, took vitals, talked to me. Recommended that I eat a FULL breakfast. Kimberly, Matt, Joy and Susan volunteered to take Sofie for the afternoon so Debra could take me to breakfast and then make sure I was okay. A big shout out to them. We have wonderful friends and everyone at ERUUF was so thoughtful and concerned!

After a hearty breakfast, I went home, napped and felt much better. I felt well enough to join in birthday festivities for my dear friend Kim. Low key, fun, good food and nice people. Just a great way to end the weekend. Happy Birthday, Kim!!

For the Christmas Impaired

I've never been one much to celebrate or decorate for Christmas, especially as an adult. Call me Ebeneezer or say "Bah Hum Bug"...go ahead, I've heard it all. I don't remember at what point in my life Christmas became so taxing. Maybe it was after my parents divorced and I had to "choose" between holidays. Maybe it was after that, when I came out as a lesbian and put a self imposed divide between me and my family. Guess it doesn't really matter how or when, just that it occurred naturally and over time.

Add a kid to mix and see how long the Christmas Blahs last! This is the first year that Sofie has taken a *real* interest in the holidays. She's very aware that she has a mixed family. One Jewish Mom and One not Jewish/not very Christian mom. Sofie knows she gets to celebrate Hanukkah AND Christmas and she's thrilled about it...what 6 year old wouldn't be?

A few weeks ago, she reminded me of the "Christmas" Tree that I had a few years ago that lights up by itself. (Fibre optic, table top, kitch!) She wanted to rush home and put it out. So we did...five minutes later, a tabletop tree adorned the livingroom in my condo. Now what? She was a bit distraught that I didn't have lights, but understood that I didn't really have trees or a yard to decorate.

Later that week, after she was back at Debra's house, she argued with her that she's both and that she SHOULD be able to have lights. Debra succumbed, but tried to opt for white lights only. Sofie empathically stated, "No white lights, only COLORS!!" So the search began. The Jewish mom who had never decorated outdoors, was now tasked with finding lights that satisfied Ms Sofie's requests. Debra did a great job and Sofie has taken those lights as her personal responsibility. Just last week, I was dropping her off at Debra's when suddendly, her door opened and she hopped out of the car. Luckily I had stopped and was already parked!! She ran over to the plugs for the little trees she and Debra decorated. After plugging them in, she beamed(brighter than the lights on the tree.)

That my friends is Christmas for the celebratory challenged!!

Round 2 and all is well

Tuesday was Round 2 of chemo for me. My friend Angela volunteered to be my Chemo Buddy for the day. Lucky for you, she brought her camera, so you get to share in the experience, too. Unfortunately, I wasn't aware enough to take pictures of our cribbage game. Something I'm now addicted to and I'm teaching myself to play to be better next time!

The morning went incredibly smooth. All appointments were on time and the medicines dripped out of their bottle and bags at an appropriate pace and all was well. Angela journeyed down to the cafe and gathered sustinence for our long morning. We played cribbage until I just couldn't keep my eyes open due to a Benedryl give pre chemo. I was sitting under an incredibly bright light, so ingenuity took over in my out of it state of mind and here's how I slept for a while:



Unfortunately, I slept too long and we only got to play one game of cribbage and that left Angela to fend for herself for much of the time. I'm glad I brought Debra's book, Cancer Vixen along. It's a hoot and highly recommended and it kept Angela entertained.

After leaving Chemo Central, Angela dropped me off at Tracey and Sharon's house. Angela checked out and loved ALL the colors of the house...even the bedroom! She left after a quick house tour and Tracey treated me to a wonderful massage. As she was finishing up, Sharon came home and Tracey headed out to massage other folks. Sharon and I hung out, watched Al Gore on Oprah, ate Turkey soup, a sleeve of saltines and pound cake. After some quality friend time, she drove me to Harris Teeter to pick up the good drugs and off to home I went.

After a lovely soaking bath, I anticipated drifting off to sleep and waking up refreshed the next day. My body, however, had another plan. After a difficult time falling asleep by midnight, my burning stomach woke me up at 3a. After a few tums, tossing and turning and some time online, I feel asleep by 6a. I woke up just in time to get dressed for my acupuncture appointment.

Today has been back and forth with my nurse about controlling this stomach ache that's not nausea. Her suggestion was Ativan. So, here I sit in an Ativan induced state writing about life. Maybe it's time I give up this post and turn in for the night. More later.

Religious Hospitality, Aloneness, I'Hare and a Minister Installed

Sunday was a great day of enlightenment and thoughtfulness. Our new minister, Don Southworth, was installed in a beautiful, enlightening and electrifying service late Sunday afternoon. I'd never been to anything like it. I left knowing the congregation made a great choice and that there are things that which we have no idea that are on the horizon. Don is a self professed UU evangelist, two concepts you might think wouldn't mesh. He's opened my eyes to the idea that evangelism can be a positive word. I'm sure I'll be writing more on this later.

For the regular Sunday service Peter Morales, a former classmate of Don's at Starr King, the theological school that many Unitarian ministers attend, delivered a wonderful sermon on Religious Hospitality. I wasn't sure what message I would take home from this sermon. He spoke of things that I did expect, like reaching out to visitors. However, he tapped into something that has really been hitting home for me lately. He quoted some statistics(that I'm totally blanking on right now due to chemo brain!!) from a study that was published in American Sociological Review One fact did stick out though. The study reported that in 1985 the modal(most commonly reported) response was that Americans had 3 people(kin and non-kin) that they confided in. The shocking part was that in 2004, the modal response was ZERO confidants! How incredibly sad it was to hear that statistic.

During that sermon, I started thinking about how this applies to my life. How many people to I truly confide in...other than my therapist(and that's even debatable)? I guess, honestly, two and 1/2...again debatable and up for discussion. Since the whole Cancer thing, I've opened up more and I'm learning to ask for more, but it's still incredibly hard to be real with people. Something I need to explore more.

The installation service for Don included an awe inspiring performance by the Eno River Singers that was actually the world premiere of the piece. The music was entitled, "I'hare" (ee har ay). In the composer's note, she states, "I'hare is a Pawnee word that is invoked when calling people to be fully present, to enter a state of thoughtfulness and reverence." In my opinion, it was the perfect choice to be performed at this ceremony. I noticed many gaping mouths and teary eyes as the music swelled and exclaimed the word, I'hare!

The remainder of the ceremony was as thought provoking and invigorating as the morning ceremony and the performance of I'Hare. The Charge to the Congregation garnered a standing ovation for Gini Courter, moderator of the UUA. I wish my chemo addled brain remembered the 3 points she laid out for us. (Here's hoping there's a transcript of the service available at some point. Peter's Charge to Don was full of love and compassion and both men were in tears. Peter's final charge to Don was "To continue being Don." From what I've witnessed as a member over the past few months as Don has settled in, Peter was absolutely right. Don, just keep being Don and things will grow in ways we can't even predict. Personally, I'm looking forward to growing right along with the fellowship with Don and Mary's guidance, partnership and love for Unitarianism.

A Day in the Park and Snow

Sofie and I spent an hour or so at her favorite park today. This park has the tallest slides and the coolest play structure. Initially, it was her and 3 toddlers; however, 15 minutes later she was happily playing with kids her own age. It was a beautiful, crisp late fall day. Unlike the days we've had with temperatures in the 70s. I'm glad it's cold again.

This evening we joined friends at the mall to enjoy the "snow" the mall provides daily at 715p. The kids were excited with the "snow" which was nothing more than soap bubbles being blown from the tops of a few stores. Whatever it takes to make kids in the south enjoy the hopes of snow!!

New Camera

Nothing like an impulse buy for myself 3 weeks before Christmas! I was in Costco this morning picking up a Costco size of Purell Hand Sanitizer. (I oppose the use of those hand sanitizers on the general principle that germs are actually good for you and help build your immune system. Don't even get me started on the fact that kids aren't exposed to enough germs!! Anyhoo, a side effect of chemo is a low white blood count which leaves me susceptible to infections, et al. My nurse called and recommended this stuff along with constant hand washing and staying away from sick people. So, I had to buy those silly bottles of Purell.) Side note ends.

While walking through Costco, I noticed a table full of a variety of Digital Cameras. My camera stopped working recently, and although I hadn't intended to replace it at this exact moment, there had such a great price on a Sony Cybershot. You can see the camera here:
Cyber-Shot W70 The price at Costco was considerably less than the Sony website! So far, I'm very happy with it. I've taken a few pics of Sofie and will take more over the weekend. It's pocket-sized and has some great features. I've rationalized this purchase to death, but the fact of the matter is, I wanted it and I haven't bought anything for me recently, so I did. I enjoy taking pictures and with this smaller camera, I'll be able to bring it with me everywhere and capture more moments of my life. I don't want to miss anything and I want to share some of those moments with my blog readers.

Cold Running Creek and Baldness

Last night I enjoyed the company of Angela and Annette for a quick bite at the Mongolian restaurant on Ninth St. We met there to quickly eat, then we headed up to the independent bookstore for a reading. My friend and writing goddess teacher woman Zelda, just self published her second novel. This was her first reading since publication. I had read her first novel and enjoyed it, although the subject matter was a little difficult to read. I wasn't sure what to expect from the second novel, but I wanted to be supportive and attend her reading. I'm really glad I did. She's a great reader. I admit, I haven't been to that many readings, but I have gone to some. I loved the way she read each character in a unique voice. Her enthusiasm and general presence made the reading fun. Afterwards the question and answer period was quite informative, too. Zelda is someone who I see really sticking to her convictions. It may have not always come easy for her, but she practices what she preaches and I admire that in her.

It's always interesting to hear what goes into creating a story...the blood, sweat and tears that were poured into this story became quite evident as she talked about the process. Her answers were genuine and real and the subject matter is fascinating. To read more about it, go here:
Zelda's books You can read about Fifth Born, her first novel, too.

Something interesting happened at the reading. I wasn't the only bald woman there! I was the only bald woman due to chemotherapy, however not the only bald head. I wonder if it's cultural thing, since I've seen several African-American woman with hair shorn as closely as mine and they don't seem to surprised by my baldness. There baldness seems to be by choice and so much more natural than me walking around with no hair. As a side note, every woman I've seen with little or no hair has looked beautiful! I personally think I look like my grandfather! However, I have gotten many compliments from all types of women. It's a nice stroke to the ego during a time I may not be feeling my best. I've been told that I'm "brave", "cute", "hot", "sexy" and other such things. I find it hard to grasp that I'm hot under any circumstances, but it is nice to hear while I'm sans hair. The worst thing that happened to me since the shaving was a woman followed me into the bathroom at a basketball game and looked up, went back out the door to see the sign. I heard her husband ask if she went in the bathroom because they thought I was a man. I just smirked at her when she walked back in. Have they never seen a person who's had Cancer before?!?! I'm sure that'll happen more than once, but it's something I'm unfortunately used to having happen.

Well, I guess I can't deny it now!

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