Shrimp and Scallops and Clams, Oh My!

I am truly learning to let others take control. In all the best ways!

Deb McSmith, newly in the Triangle since September, planned a little road trip to Wilmington (about three hours from Durham) last weekend. She did all the planning, including finding a terrific condo on Carolina Beach (another 20 or so miles up the coast) where I was blessed to have the master bedroom, overlooking the ocean.

I had been and continued to be nauseous and in pain, but there are pills for that (don't leave home without my pills these days!!!). Deb did all the driving. We kept a leisurely pace.

We picked up a few groceries in a small market after kind of just driving around, looking at the various houses (all colorful on Carolina Beach, like "Smarties" candies), and just roaming. We were referred to a great seafood place. I have finally learned a lesson I was trying to learn my whole life..... portion control! We shared a shrimp cocktail and then a wonderful plate of scallops. I could eat three shrimp and five scallops but every bit was delicious and I was totally in seafood heaven!

The next day, Sunday, we headed for Wilmington, which has all sorts of "historic" buildings downtown. Truly lovely. We did some looking normally better done on foot via the car, since I am not as lively these days, then we parked. We asked someone for a good local restaurant and again, we were not disappointed. I had sweet potato pancakes and savored each bite. Then, we walked, fueled by a good brunch/breakfast.

And the fun began. We found a charming little gift shop, one of those that has all sorts of things you don't see everywhere and we shopped. Right after I believe I had declared I did not need to buy a thing. But in a way, I didn't, these were presents for the holidays coming up.

Then we were browsing around and lo and behold, a tattoo place. I don't know what came over me, but one of the things on my long (in my head) "to do" list was to get my old (circa 1985) tattoo recolored. It is a scallop shell (you see the theme here, now, don't you?) and in those days, the colored inks were just not that great. I had the original tat done in Maui, but I asked the burly guy in the doorway if they could recolor it and he said "sure". I told him I would think about it (being low in the white count department, I wanted to at least take a moment to pause and consider risk factors). But I was back in there in five minutes.

Yes, it hurt a bit, what pleasures in life don't include a bit of pain? But it is all lovely now, just like it was in the fall of 1985, when I got this first (and to date, only) little tat. I am really happy about it, it seems to be healing well and they use totally disposable needles now, so no worries in the infection department. My nurse and doctor probably thought I was nuts (what 55 year old cancer patient gets tattooed?) but what the heck. Something else to cross off the list.

The last shopping adventure was in a vintage clothing store. I found two adorable little black dresses, size 1-3. Ha! You wonder if I am that size? Never will be. But my friend Laurie's daughter Maya, who went on the cruise this past summer with us, is a 2 or 3 and is in her first year at Tufts in Boston. I called her, lamely describing these dresses and then just picked one and plan to send it to her. It really is classic, black with lacy, sparkly bodice. I hope she saves it for ten years, maybe by then, Sofie will want to wear a cute dress. Maybe. I think that is what this purchase was about, wanting to buy my teen aged daughter, the one I won't ever get to know, a little black dress. To which she would probably say "Oh, Mommmmmmmm". And never wear. But maybe Maya will! Maya is fun to dress up, she can wear anything if it is tiny enough. Never was my issue.

Supper we intended to try another restaurant, but it was smokey (yes, I know I live in a tobacco state). So we went back to Bowmans, the great seafood place and took our dinners to go. Eating in front of our TV, I had the best fried clams I can remember in twenty years! Good food, even in small amounts, can be so healing, I think.

The drive home was uneventful, but I am so grateful to Deb for this opportunity to be away from home, kid, cats. And to know that if well-paced, I can still do a road trip.

On to other adventures this week. I had the biopsy yesterday and today I start radiation. What a week this is.

Road Trip

I have been feeling lousy all week, as readers and callers know. Mostly sleeping a lot, all the time, in the past two rainy days. Well, I need something to try to get me up and out and into the world. So a little Road Trip is the plan. Deb and I are going to go slowly paced, with her doing all the driving, to Wilmington and the nearby beaches. So I will write when I return. I am armed with anti-nausea drugs (why am I more nauseous two plus weeks after stopping chemo???) and pain killers (Vicodin) and off we go.

More after I return.

Writers Block

I have been meaning to write for days, there is a lot happening, but the nausea and general state of queasy has prohibited sitting and being creative.

Which is odd, since I haven't had chemo for several weeks now. So why the nausea? I am taking meds for it constantly.

So I will bullet point the highlights. And write more creatively later on. Suffice to say, life kinda sucks at the moment. And I want to spend it in bed, or lying down, most of the time.

• Chemo is not working, the CA-125 was 702 last time. Not good. Chemo stopped as of last week, but I had already been off a week, so this is now week three of no chemo. But nausea continues. Why??????
• Avastin not known if working, so that is also cancelled.
• No energy. No motivation. I feel punk, most of the time.
• Went to see radiation ocologist for pain control. They will begin radiation in a few weeks, to hopefully "shrink" tumor site and allow better pain control, at least for a while.
• Will have a biopsy of the tumor site next week, on Wednesday (treat or treat!!) then test against other chemo agents not yet tried to see if one out there might work. I am keeping my fingers crossed, but optimism tempered by pragmatism. So not holding breath either.
• I feel crappy most of the time, hate complaining, but I do. Not good for parenting, homework, life.
  
  More later.

Managing the Pain

Pain is something I guess I have not up to now, had that much experience with. For dental work, I take the big injections. For surgery there has always been those delightful morphine drips. But for this, chronic and unrelenting pain in the gut, there is Vicodin and now, Percocet. After last night of absolute agony, where I was nearly in tears and bargaining with G_d for pain control, I filled the Percocet Rx. But the generic said Oxycodone, and that drug, I think, is the one that made me a bit nauseous when I had it post op last year. But I was a desperate woman.

I decided that after not sleeping last night, not much, I would cancel the appointment today and took one of the new pills. I lay down at 10:15 and awoke at 2:45! I guess it kind of worked. But I have been a bit nauseous all day and food, most food, makes me want to hurl.

This appetite thing is strange. My whole life, I have wanted not to care that much about eating, to not eat or eat less. Now, with my appetite all but gone, food has truly lost its appeal. But I still cook for Sofie and sometimes for Jamie, and I should eat. So they tell me (first time in my life that a doctor has encouraged me to keep eating when I can). I made myself a small baked potato tonight, that was about all I could muster. Even chocolate (the average kind, not high end) has lost its appeal and tastes waxy. The good stuff still is worth a bite now and again. I consume a lot of unsweet iced tea and water. Even the coffee is not doing it right now and dairy is something I have learned the hard way to avoid for the time being.

Managing these moments, the queasy and painful ones, is tough. Really tough. I just want to be in bed, under the covers with a hot pad. For some strange reason, a heating pad makes me feel better sometimes. Like it were just a bad case of cramps (as if).

I know I will get better at this. And the consult on Monday with the radiation oncologist for pain control is encouraging, I hope it will work for me. I cannot keep going with this pain level and I expect it is likely to be worse, not better in the months to come. So I need help!! I have to do that so I can still be a bit of a fun Mom.

Today, after an early pick up and a trip to Costco, we had an afternoon video, followed by dinner and games. Board games, and Ms. Sofie, I am sad to report, is not a very good sport. How do you teach sportsmanship to a kid? She gets all pissy when I win, and overly excited when I don't. Not very nice behavior! I will do some reading on this, I am sure there are articles or books on how to make your kid more reasonable when it comes to playing games.

I am off to bed a bit past 9 PM, as tomorrow is Saturday and I have to be up to make pancakes in the morning, part of our Saturday routine!

My Night Visitor

Sofie has been coming into my bed every night for the past couple of weeks, with a rare exception one night when she was really exhausted.

Sometimes I hear her and wake up (checking the clock to see what time it is, it varies between 1:30 AM and 4:45 AM). Sometimes I wake up and she is there, all legs and arms, cuddled next to me. I stroke her hair, and drop off back to sleep.

I know without words being spoken what this is about. And, as much as it is probably a "bad habit" I cannot bring myself to change this. I need it as much as she does. Sometimes like this morning, when I have no idea when she arrived, as I went to bed early, I just reach out and hold her little hand in mine, while she sleeps. Sometimes, when she is doing her burrowing and back flips, I gently pull her back "into position" in the bed, so she doesn't take up more than two thirds of the mattress. She rarely wakes up. She just snuggles down into the bed and continues her slumber.

She snores, and I have come to really love to hear her little snores, her soft breathing, her little sighs and noises. I don't know if we will keep this up as my body gets more painful, but hopefully we can "co-sleep", something we did not get to do when she was an infant. Perhaps it will make her memories of me more vivid. In any case, I cannot think of a good enough reason to stop this, not quite yet.

Another Change in the Path

The phone calls have already started and I am just home an hour or so from Duke, where I got two units of blood transfused to help counter the fatigue. But no chemo. After the visit today, the frank discussion of the recent CT (in a nutshell, more, bigger and more places), it seems that unless we know what might work in my body, chemo is like taking sugar water. It does nothing for the cancer. My body is simply drug resistant. There are some tests out there, similar but not the same as what they do for HIV, that *might* tell us if there is a medication that could work. That would require a day surgery, taking a chunk of the tumor off the liver area. Dr. Valea is worried that I might have trouble healing, but I am going to think about it. I don't simply want to stop chemo all together if there is something out there that might work. We also discussed Stage I clinical trials...those are the ones where a possible drug is tested on humans, right after the lab rat stage. They don't know much about how the drug will work on the humans, or how much drug or what side effects. Most studies won't allow me in due to the emoboli of earlier this year. And frankly, I don't feel much like a lab rat.

Quality of life. Quality of life. That is my mantra now. I kind of threw Dr. Valea off guard, I think, when I said (as we were trying to deal with that "how long" question) "so, I might not be here this time next year". Declarative sentence. He looked pained, actually and agreed that was possible. I would rather have had an argument that I could live for two or more years, but that did not come.

Most important is to be Mom, even if I am not a fun Mom, for Sofie.

So it is all about acceleration now. It is one thing to think you have a few years, another to think in terms of months. But that thinking, harsh as it probably sounds, is better for me, because I do have a tendency to procrastinate. And this time, I don't get a do-over. There are no extensions. If I don't do the things I think I want to do now, I will die with them undone.

They are not spectacular things, but they are a step or two beyond getting my affairs in order (which of course, being the pragmatic person I am, I am doing). But they are hard, because as I make the list and then begin to cross things off the list, I know I am only getting closer to when the inevitable is going to happen. Letting go for real. And saying goodbye. I am so not ready.

PS: I am not really in a place where I want to talk about all this quite yet, I am trying to let it sink/soak into my brain and talking about it makes it too intellectual, not an emotional process. So I hope y'all understand for now.

Sleepless Night

Yesterday, after work, I literally jumped into bed for a one hour nap before Sofie came home. I was that tired. Which is kind of the chronic state of my current life. I have become a pro napper, me who hardly ever napped in my previous life, because it wasted time. Now, give me a flat surface, a cozy blanket and I am out cold.

So when I went to sleep last night, at a reasonable hour (after watching Weeds), I thought falling back to sleep would be easy. But instead, I was awake for hours. Sort of, in that twilight state where you doze off and then find yourself awake again. Thinking.

Today, in a few hours, I will see Dr. Valea in clinic. And we will be discussing the most recent CT, the rapid growth of this thing, and what can I expect. I am really scared this time. I cannot slow it down and it is apparently growing way faster than I thought. Which explains a lot (pressure on my bladder, for example, which is downright annoying) and which might mean that I have to accelerate my "life plan" a lot. Not fair. I had just gotten it to a point where it felt like it was real, not a National Geographic travel plan, but a short list of a few things I would love to do plus time with friends and family, which is the real deal.

I have, as those of you who read Jamie's blog know, started to give things away. This is a creepy yet wonderful thing, because I can see people appreciating something I pass along to them, which is different than simply distributing my possessions after I die. But it is a bit creepy too. For both myself and probably the recipient. So doing it carefully. So far, I have given away some purses and jewelry, a briefcase (to a colleague who is rising in her career, and was the first person I met at the Library three years ago), and my guest room bed and linens to a woman who lost hers in a recent fire.

This "shedding" is a positive thing to do, but it doesn't really help me deal with the mounting fear. That time is zipping by and that I don't have much left. I hope that I am wrong, but I am afraid that I am not.

Sofie came into my bed (as she has been doing most early mornings) about 4 AM today. Woke me for a few minutes, but then, with her snuggled next to me, I drifted back to sleep until the alarm went off at 6 AM. There is nothing quite like being next to her to warm my heart...even if she is kicking her legs in five directions.

The cleaning folks are coming and I have to do the "pick up for the clean up" this AM, before Sofie wakes and the routine of the day starts. I did Sofie's room last night, but the pile on the coffee table is daunting. Typically I scoop it all up and pile it until the cleaning is done, then sort and toss things. Story of my life these days, the tossing of things. It is weird to throw out stuff I worked on, even if it was ten plus years ago, knowing I won't ever have to show it to a potential client or employer. It is just stuff, but it is still weird. But better for me to clear out all this stuff than leave it for Jamie and others to do after. Do most people prepare for their deaths this way or am I being perverse?

All these things are distractions, really, from the fear. But who says distractions are bad?

I will write more after the visit, if I can.

Numbness

Well, the news is in and it isn't pretty. I called Teri yesterday on the way to work to ask about a flu shot and see if the results of the CT were back. They were and she was direct with me on the news. What I am feeling, pain-wise, is not my imagination. The tumors are increasing in size, location and number. And this seems to be happening rapidly.

Ovarian cancer (Google it, if you haven't already) is a fast growing, hard to treat cancer if in stages III or IV. Mine started out in Stage Ic, but now, well, we might as well be dealing with a IV.

This was, to use the word Lindsey Lohan used about rehab, "sobering" news. Not unexpected, but you know, when you hear the hard stuff in black and white, so to speak, it can knock the wind out of you.

I called Jamie, then drove to work and actually had a great and productive day, all the while on the pain meds. I am taking Vicodin freely now, not in excess, since I drive, but enough to take away the pain more or less during the day. I basically consumed the meds and coffee yesterday until dinner. Never felt hungry until about 4 PM, and not much then.

And I didn't really react emotionally to this all day, other than to feel a sense of dread every so often. I talked about it with a board member, and also with one colleague, then went about my business.

Jamie and I spent time together last night, eating leftovers and trying to talk. I still felt the protective shields all around me, it was hard not to be either sarcastic (we discussed how to deal with giving away the contents of my bedroom, "after after" as we have started to call it). But it was impossible to cry. I am not in denial, far from it, but I just feel the pressure of my to do list, both at work (where there really is no pressure at all) and personally, to accomplish all the damn paperwork and such to move forward on the trust, the disability, and the other gazillion things.

I feel like I need to just get into a meditative space for a bit, then wait until the feelings come up. Which I am sure they will, right? This is surreal stuff, this accelerated dying thing.

I liked it better when I thought I had three to five years. That is out of the question now, and I am thinking I had better prioritize my "must do" travel list, because it looks like time is not on my side on this one.

I dread becoming less able to care for myself, I have never ever been a "good patient" in that way, and this doesn't bode well. I don't need a lot of physical assistance now, but I suspect this will change rapidly. All too rapidly.

Jamie Googled "end stage ovarian cancer" and the results were not pretty. I hope that my insurance will cover a home health nurse, because I want Jamie to be focused on Sofie and not on my care. We even talked a bit about hospice vs. home last night.

I would like to go back to a year ago, when I thought this battle had been won and the hard part was over. This totally sucks.

Waiting Game

I am getting ready this morning to go to work, I have not been since Friday. I haven't felt well since the weekend and only started to yesterday afternoon, more or less. It is all relative.

I had another CT scan (chest, abdomen and pelvis) on Monday afternoon. And I haven't heard about the results yet. I am waiting, but not really wondering. I feel like I already know. The question will be what to do next.

If the chemo is not working, and the tumors are growing anyway, do I stop the chemo and at least not have to deal with the side effects of that anymore? Not that they are so terrible: some nausea, hair thinning (OK, that is not so great) and fatigue. Same old same old. But does stopping mean giving in or giving up? It is so much more of a psychological question than merely one of treatment.

Sofie wants me to be "done" with treatment, but she thinks that this will mean I am getting better. It is going to be very hard to tell her (if treatment does stop) that this doesn't mean that the cancer is gone. I want to put that conversation off for a while.

I wish I were done with work since I feel kind of 50/50 crappy or not most days. I find just getting ready for work tires me out!!! Today, however, I have several meetings and I have to make this happen. But all I really want is to sleep more.

What a lame excuse for a life. Perhaps if I stopped the Topetecan, the fatigue would not be so pronounced, at least for a while. Things to ponder, while I wait, wait, wait for the CT results.

One good thing: The Coumadin seems to be getting regulated. I had an appointment at the coagulation clinic yesterday and the "levels" are just exactly where they should be. That was good news, if they still are in two weeks, then I guess they will have figured out the magic combination of dosages and I will be OK on that front for a while. You take the blessings where you find them.

OK, enough procrastination, I am off to get a quick shower and get dressed for a real day at work.

Another Lost Weekend

Sofie and Emma did a sleepover on Friday night. For anyone who hasn't experienced this with little girls, sleeping is the last thing that happens. I waited and gave "warnings" to them, but by 11 PM, they were still up, singing to each other. Very cute. But I know that this would mean crabby girls the next AM, so I took Sofie out of the room so Emma could drop off to sleep. And Sofie did too.

Jamie had Sofie with her this weekend, and will bring her back in about an hour from now. So I had a list of "light" projects around the house that I never get to, to accomplish while I had hours open. It was nearly a total bust. I did get Sofie's room picked up, mostly, and that is a good thing, because nobody could even see the floor in there, but cleaning the fridge is still not quite done (did the frozen food inventory yesterday, but more to clean out before the evening is up).

I have just felt punk all weekend. It is as if my body knows when down time is coming and all I want to do is sleep. I did go to Sharon and Tracey's for dinner last night and was late coming back, we had a good talk about the future. But today, I was feeling totally sluggish, nauseous (where does that come from all of a sudden?) and just crappy. I finally gave in to the puking (felt better but still feel queasy now) and then slept some more. Didn't even really read the NY Times. It was just a lost day.

I did have a couple of great conversations with a friend here and with Kile, so that was a blessing yesterday. Things are just coming up for me that need saying and Kile's timing was perfection, so we covered important ground.

So once again, I had better adjust my expectations for what I can "do" on a weekend. And perhaps it is time to ask for some help. For chores and such that go undone. People have offered, but it still feels weird to accept that help, but I guess I need to practice if nothing more. It is not going to get better, and thing still need doing.

ERUUF asked me to come up with a day project which will likely be a combo of yard work and window cleaning, something I would normally tackle in the fall. But not this year!!

I have to include in the mantra, it is a blessing to give and receive. It is a blessing to give and receive....

A Day of Consternation About....

The other night, Sofie got one of those looks on her face, a worried kind of furrowed brow look and I called it her "consternation" look. Then being the one who feels responsible for her expanding vocabulary, I defined that. And just for fun, also said it sounded a lot like constipation, but that was a different word all together!

Today, I had another day of consternation....about constipation. I will spare you all the details, but suffice to say that one side effect of this whole cancer/chemo thing is that I miss being a normal person in the bowel department. It is either too much or not enough. Since being back here from CA, I have felt bloated and uncomfortable too many days. And even strong Peets coffee isn't working.

And today, after getting all dressed up in work clothes, and going to two meetings before noon, I realized I really needed to go back home, get in comfy clothes and just relax, hoping nature would take its course. So far, not so good, but I remain hopeful.

This was just a short, hopefully not TMI post about what is truly going on for me this week. That plus trying to move through my to do list at work! I still have over 700 hours of share leave, amazingly, and I am planning to use that up before officially starting on the less financially robust short term disability. But I will likely stop being there on any type of schedule by the end of November. I am still amazed at the way colleagues, friends and anonymous strangers came forward to donate hours.....blows me away.

Time to go get the kidlet soon, it has been good to just nap and relax and stop feeling so miserable about my body today. Tonight, Sofie has her therapy and then we go to her choice of restaurant, which is likely to be the same old same old: Golden Corral. She loves being able to make all her choices there, independently. I play it safe and pretty much eat the same type of food each time. They are sure getting their money's worth from our visit, however, as my capacity is quite diminished!!

Long Term Napping

Today was chemo again, it seems to be just part of my weekly schedule these days. I had an unusual experience, checking in fifteen minutes early for my 9 AM appointment, the buzzer went off at five minutes before nine!! I was in there, with Marcella, one of my favorite nurses, in no time. So efficient.

I hadn't slept well at all the night before, so once huddled under my cozy lap blanket, warm from the warming bin, I tried to read the NY Times, but kept nodding off. The treatment (both the chemo and the Avastin) were done by 10:30 and I was out of there, early for the hematology clinic. Got in there about 11:15, not bad, since the place was once again packed. My levels for the Coumadin are bouncing up and down as they play with the adjusting of the drug and the vitamin K (critical in Coumadin dosing). This time, it was too low. Last time,way high. So they keep trying, adjusting the dosing for each night. Good thing I have one of those pill holder thingies for the night dosing too, it makes it easier to remember when I set it up a week in advance.

Got home, just so sleepy still and figured I would nap for an hour or so then begin the post chemo to do list. I usually plan to grocery shop on Tuesdays, since it is far easier without Sofie in tow. And faster. But it was not to be! I lay down, set the alarm for 1.5 hours from then and found myself still tired, so I reset it to be in time for kid pick up and just slept. And slept. A total of about 4.5 hours!!! Nothing at all got done. Which is not so ho hum as it sounds, I have limited energy in the night, so these daytime lists help keep me somewhat on top of errands, like the post office (nephew's birthday present) and the dry cleaner, etc.

But it wasn't to be. Picked up Sofie at school and she entertained herself for a while, I got some stuff out for dinner. Jamie arrived a bit after 6 and I was off to a workshop at Cornucopia House (support place for people with cancer) on creating a "family love letter", which is essentially about all your documents, and your wishes being written down where people can find them. I am actually doing a pretty good job in this area, (being the control queen I am) so it was helpful, but not earth shattering!

Got home and Sofie was already in bed, but as she has been doing lately, she arrived in my room about 2 or 3 AM and snuggled into bed with me. I don't even fight this any more, not just now. She obviously needs to be next to me, and I her. And as long as she stays more or less on half of the bed, I can sleep pretty well. Except for the frequent trips to the bathroom. This thing is now apparently pressing on my bladder as well as other parts of my internal organs and that makes it in charge of the peeing. I long for a full uninterrupted night of sleep. Something I seem to get in a hotel, but hardly ever at home. Cats, kid, bladder, all conspire to have me up two to three times in a six hour period. No wonder I am tired in the afternoons!

But I got a decent night's sleep, comparatively, last night. Taking the Vicodin pretty regularly these days and that helps. But I hate being dependent on a drug to kill the pain and help me sleep. I don't exactly worry about becoming addicted (would I get to go to Promises in Malibu if I did?) but I do worry that I need pain meds now, which seems waaaaay too early in the decline period. Or is it? To me, pain is a sign that things are not getting "better" and if it keeps increasing, I worry that the time I have is shorter than I think. How on earth will I get the whole "to do" list for my life into a shorter framework? There will not be any extensions or do-overs this time!!

Another Monday

And here I am at work, trying to make my time left here at the Library work. I have been busy sending emails mostly and plotting out a few things, but I am also aware of how uncomfortable I am.

My belly woke me up about 6 AM today, in quite a bit of distress. I took a Vicodin (amazingly, I take them without much fuss these days, a huge change from a few weeks back). Then I lay down for 20 minutes to see if the pain would cease. I put the hot pad on my belly, which makes me feel better, even if it really doesn't do anything.

So here I am, not feeling 100% by a long shot, but glad I am here. Tomorrow I go to chemo again, I already did the labs. All part of the goofy routine. It is already nearly 2 PM and I am beginning to feel sleepy, in need of that afternoon nap.

I don't know how people live with chronic pain, I really don't. It is the most distracting thing. and I am not very good at this. But I am trying to push through a bit more. And the Vicodin seems to go right to the pain and not too much to my brain, so I feel a little better taking it when I know I have to drive on it later on.

Jamie arrived home last night from her retreat and basically took over Sofie at the junction of supper on the table. So I was able to lay down, which I really needed to do, and just vegetate. I was one tired person.

The Reiki workshop from Saturday was great for me, I abandoned my inhibitions about touch on my belly and just plunged in. I was afraid I would be too needy (needing the Reiki but not so able to give it as well) but it seemed to work both ways. I left there feeling pretty energized, considering that I was there for nearly 8 hours.

I have a somewhat busy week planned, so I am actually glad that I have chemo tomorrow, to slow me down at least one day. What kind of person looks forward to chemo as a method of relaxation?